slider top

Footnotes: Far From the Tree


A few notes on the notes. First, I allowed everyone I interviewed the choice of being quoted by name or pseudonymously. I have indicated all pseudonyms in the notes. Though I attempted to stay as true as possible to the identities of those who are quoted pseudonymously, I have changed some personal information to protect the privacy of people who wished me to do so.

I have put into these notes citations for all quotations from printed sources; everything else is from personal interviews conducted between 1994 and 2012.

To avoid making this book even longer than it is or festooning it with ellipsis marks, I have condensed some quotations from written material. Where I have done so, the full text appears in the online notes.

Links embedded in the online notes lead to full text of articles, either freely available, by subscription or for individual purchase; PubMed, ERIC and National Criminal Justice Reference Service abstracts; and Google Books entries for books consulted. Additional information on sources—including WorldCat entries showing library holdings worldwide—can be found in the bibliography.

Epigraph

See The Collected Poems of Wallace Stevens (1990), pages 193–94.

I: Son

1 Donald Woods Winnicott first promulgated the idea that “there is no such thing as a baby” in his 1952 paper, “Anxiety associated with insecurity,” later anthologized in Through Paediatrics to Psycho-analysis (1958) where it appears on page 98; see also The Child, the Family, and the Outside World (1987). He repeated this ide often in his lectures and writing.

2 My investigation of Deaf culture resulted in an article, “Defiantly deaf,” New York Times Magazine, August 29, 1994.

3 The Cochlear corporation website (http://www.cochlear.com) contains numerous instances of the word miracle; see also, for example, Aaron and Nechama Parnes’s report from the 2007 Cochlear Celebration, “Celebrating the miracle of the cochlear implant,” at http://www.hearingpocket.com/celebration1.shtml. For the other side of the story, see Paddy Ladd, Understanding Deaf Culture: In Search of Deafhood (2003), page 415: “In the 1990s, genetic engineering has initiated the process of trying to identify ‘the deaf gene,’ thus bringing within theoretical reach what might be termed the ‘final solution’—that of eradicating Deaf people altogether.” Harlan Lane likened attempts to eliminate deafness to attempts to eliminate ethnic groups in Paul Davies, “Deaf culture clash,” Wall Street Journal, April 25, 2005.

3 For more on the ideal age of implantation for cochlear implants, see Chapter II: Deaf in this book.

4 Studies establishing a heightened risk of abuse for children who do not resemble their fathers include Rebecca Burch and George Gallup, “Perceptions of paternal resemblance predict family violence,” Evolution & Human Behavior 21, no. 6 (November 2000); and Hongli Li and Lei Chang, “Paternal harsh parenting in relation to paternal versus child characteristics: The moderating effect of paternal resemblance belief,” Acta Psychologica Sinica 39, no. 3 (2007).

5 For more on the Copenhagen interpretation, see the entry “Copenhagen Interpretation of quantum mechanics” in Stanford Encyclopedia of Philosophy.

5 The theologian John Polkinghorne reported this interpretation in keeping with what he had learned from Dirac. From page 31 of Polkinghorne, Science and Theology: An Introduction (1998): “Ask a quantum entity a particle-like question and you will get a particle-like answer; ask a wave-like question and you will get a wave-like answer.”

5 “All I know is what I have words for” comes from part 5.6 of Ludwig Wittgenstein, Tractatus Logico-Philosophicus (1922): “Die Grenzen meiner Sprache bedeuten die Grenzen meiner Welt.” C. K. Ogden translates the sentence as “The limits of my language mean the limits of my world”; that version occurs on page 149 of Ludwig Wittgenstein, , translated by C. K. Ogden (1922).

5 From the entry “apple” in The Oxford Dictionary of Proverbs, edited by Jennifer Speake (2009): “The apple never falls far from the tree: Apparently of Eastern origin, it is frequently used to assert the continuity of family characteristics. Cf. 16th cent. Ger. der Apfel fellt nicht gerne weit vom Baume.”

6 From the opening of Leo Tolstoy, Anna Karenina: “Happy families are all alike; each unhappy family is unhappy in its own way” (??? ?????????? ????? ?????? ???? ?? ?????, ?????? ???????????? ????? ??????????? ??-??????). The line is the first in the book and occurs on page 5 of this edition: Leo Tolstoy, Anna Karenina, translated by Constance Garnett (2004).

7 Early development of gay children is discussed on pages 16-21 of Richard C. Friedman, Male Homosexuality: A Contemporary Psychoanalytic Perspective (1990).

7 Balkan Armenian Restaurant at 129 E.Twenty-Seventh Street became famous for both its delicious, reasonably priced food, and for its advertising postcards, which the management would stamp and mail for customers who wished to share their culinary good fortune with friends. I have never been able to reproduce the ekmek; someday, I hope to rediscover it.

7 For more information on gender-atypical color preference as a predictor of homosexuality, see Vanessa LoBue and Judy S. DeLoache, “Pretty in pink: The early development of gender-stereotyped colour preferences,” British Journal of Developmental Psychology 29, no. 3 (September 2011).

10 The unforgettable last line, “Wherever they go, and whatever happens to them on the way, in that enchanted place on the top of the Forest a little boy and his Bear will always be playing,” occurs on pages 179–80 of A. A. Milne, The House at Pooh Corner (1961).

11 See Amos Kamil, “Prep-school predators: The Horace Mann School’s secret history of sexual abuse,” New York Times Magazine, June 6, 2012.

13 The quotation about “wounded, confused people” is from a Facebook post by Peter Lappin.

14 For more information on surrogate partner therapy, see the website of the International Professional Surrogates Association, http://surrogatetherapy.org/.

15 The gay-damning quotation comes from “The homosexual in America,” Time, January 21, 1966.

16 Hendrik Hertzberg, “The Narcissus survey,” New Yorker, January 5, 1998.

16 On December 22, 2011, Michigan governor Rick Snyder signed House Bill 4770 (now Public Act 297 of 2011), the Public Employee Domestic Partner Benefit Restriction Act. The law took effect immediately and two weeks later became the subject of a lawsuit filed by four public employees thereby deprived of benefits for their same-sex partners. See “Gov. Rick Snyder signs domestic partner benefits ban,” Associated Press, December 22, 2011; and Chris Geidner, “ACLU sues to stop Michigan law that ends public employer same-sex partner benefits,” Metro Weekly, January 5, 2012. The text and legislative history of House Bill 4770 can be found on the website of the Michigan legislature, http://www.legislature.mi.gov/mileg.aspx?page=getobject&objectname=2011-HB-4770.

16 Anti-homosexuality legislation in Uganda was originally proposed in 2009, shelved after international protests, then resurrected in February 2012; see Josh Kron, “Resentment toward the West bolsters Uganda’s anti-gay bill,” New York Times, February 29, 2012; and Clar Ni Chonghaile, “Uganda anti-gay bill resurrected in parliament,” Guardian, February 8, 2012; see also, three notes down, reference to Scott Lively.

16 The description of torture and murder of gays in Iraq comes from Matt McAllester, “The hunted,” New York, October 4, 2009.

17 The This American Life episode “81 Words” (at http://www.thisamericanlife.org/radio-archives/episode/204/81-Words) is an absorbing account of the removal of homosexuality from the Diagnostic and Statistical Manual of Mental Disorders; see also Ronald Bayer, Homosexuality and American Psychiatry: The Politics of Diagnosis (1981).

17 This passage references Scott Lively, Redeeming the Rainbow: A Christian Response to the “Gay” Agenda (2009). Representative passages include this one from page 11: “As much as we care for individual ‘gays’ and lesbians we may know as family members, neighbors or co-workers, and as much as we want all homosexuals to be saved and delivered from their bondage to sin, we cannot ignore that our ‘gay’ activist adversaries are some of the ‘wolves’ we were warned about. They are cunning and relentless pursuers of their own selfish interests, which they cannot achieve without first defeating us.” See also page 17: “Discrimination based on race or skin color is morally wrong because there is no legitimate reason for it—the criteria are both morally neutral and immutable. Such discrimination springs from irrational prejudice. However, homosexuality involves voluntary sexual conduct that has negative personal and social consequences. It is perfectly reasonable and responsible to discriminate against homosexuality on religious, moral, sociological and public health grounds. As the Scripture states in Ephesians 5:11, ‘[H]ave no fellowship with the unfruitful works of darkness, but rather expose them.’”

Scott Lively has recently been sued by a Ugandan gay rights group, who have accused him of fomenting persecution of gays in their country; see Laurie Goodstein, “Ugandan gay rights group sues U.S. evangelist,” New York Times, March 14, 2012.

17 The response of the surrogate-shopper to Ray Blanchard appears in “Fraternal birth order and the maternal immune hypothesis of male homosexuality,” Hormones & Behavior 40, no. 2 (September 2001), and is described in Alice Domurat Dreger, “Womb gay,” Hastings Center Bioethics Forum, December 4, 2008.

17 The debate over Maria Iandolo New’s administration of dexamethasone to expectant mothers is chronicled in Shari Roan, “Medical treatment carries possible side effect of limiting homosexuality,” Los Angeles Times, August 15, 2010. Primary sources in the debate include (in chronological order) Peter E. Clayton, et al., “Consensus statement on 21-hydroxylase deficiency from the European Society for Paediatric Endocrinology and The Lawson Wilkins Pediatric Endocrine Society,” Journal of Clinical Endocrinology & Metabolism 87, no. 9 (September 1, 2002); Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis, “Preventing homosexuality (and uppity women) in the womb?Hastings Center Bioethics Forum, June 29, 2010; Ellen Feder, et al., “Letter of concern from bioethicists,” fetaldex.org, 2010 (http://fetaldex.org/letter_bioethics.html); Laurence B. McCullough, et al., “A case study in unethical transgressive bioethics: ‘Letter of concern from bioethicists’ about the prenatal administration of dexamethasone,” American Journal of Bioethics 10, no. 9 (September 2010); Maria Iandolo New, “Description and defense of prenatal diagnosis and treatment with low-dose dexamethasone for congenital adrenal hyperplasia,” American Journal of Bioethics 10, no. 9 (September 2010); Alice Dreger, Ellen K. Feder, and Hilde Lindemann, “Still concerned,” American Journal of Bioethics 10, no. 9 (September 2010); and Maria Iandolo New, “Vindication of prenatal diagnosis and treatment of congenital adrenal hyperplasia with low-dose dexamethasone.” American Journal of Bioethics 10, no. 12 (December 2010).

18 For an example of African-American objections to the language of civil rights being used by gay people, see this statement by North Carolina minister Rev. Patrick Wooden, quoted in David Kaufman, “Tensions between black and gay groups rise anew in advance of anti-gay marriage vote in N.C.,” Atlantic, May 4, 2012: “African-Americans are appalled that their Civil Rights movement has been co-opted by the so-called Civil Rights movement of the homosexuals. It is an insult, it is angering when LGBT groups say there is no difference between being black and being homosexual.”

19 My friend is not the only person to propose this; see David Benkof’s article “It’s time for gay humility to go along with gay pride,” Houston Chronicle, June 26, 2009.

19 “If you bring forth what is within you . . .” is Saying 70 in Elaine H. Pagels, Beyond Belief: The Secret Gospel of Thomas (2003), page 53.

19 Maternal infanticide statistics occur on page 42 of James Alan Fox and Marianne W. Zawitz, “Homicide trends in the United States” (2007), in the chart “Homicide Type by Gender, 1976–2005.” See also Steven Pinker, “Why they kill their newborns,” New York Times, November 2, 1997.

19 Parental rejection of visibly disabled children is discussed on pages 152-54 of Meira Weiss, Conditional Love: Parents’ Attitudes Toward Handicapped Children (1994). For a dated, albeit useful, review of literature on familial adjustment to severe burn scars in children, see Dale W. Wisely, Frank T. Masur, and Sam B. Morgan, “Psychological aspects of severe burn injuries in children,” Health Psychology 2, no. 1 (Winter 1983).

19 The US Administration for Children and Families estimates that “anywhere between 30–50% have a developmental disability”; see US Department of Health and Human Services, “Adopting Children with Developmental Disabilities” (1999). A more recent study from the CDC found that the majority of adopted children have significant health problems and disabilities; it also found that adopted children are more likely than biological children to be receiving adequate parental attention and health care; see Matthew D. Bramlett, Laura F. Radel, and Stephen J. Blumberg, “The health and well-being of adopted children,” Pediatrics 119, suppl. 1 (February 1, 2007)  (finding that about 20 percent have moderate to severe health problems, about 37 percent have special health care needs, about 17 percent have developmental disabilities, about 23 percent have learning disabilities, and about 27 percent have emotional/behavioral problems.

20 The first occurrence of the term commercial eugenics appears to occur in M. MacNaughton, “Ethics and reproduction,” American Journal of Obstetrics & Gynecology 162, no. 4 (April 1990). Watergate co-conspirator-turned-evangelist Chuck Colson helped move the meme in his article “Judged by our genes? Genetic screening,” Breakpoint Prison Fellowship, April 24, 1996: “We’re not talking here about racial or political eugenics—the kind practiced in Nazi Germany, where Jews were labeled genetically inferior. Instead, we might call it commercial eugenics—where parents act like consumers who treat their babies as merchandise that must fit certain specifications.”

The term commercial eugenics was later adopted and widely broadcast by the economist Jeremy Rifkin, first in his article “Patent pending: Consumer-driven science and the new eugenics,” Mother Jones, May–June 1998: “Prenatal testing has already prepared the way for the acceptance of genetic intervention and commercial eugenics. Amniocentesis, the oldest and most widely used method, dates back to the 1960s. Although prenatal tests can detect genetic disorders, as of now, less than 15 percent of those disorders can be treated. This means that for the vast number of seriously debilitating or fatal diseases that are testable in the womb, the only choices are abortion or bringing the baby to term.”

In 2002, Rifkin joined forces with conservative commentator William Kristol to sound the alarm about the dangers of commercial eugenics; see their letter to the editor, “Biotech battle,” Forbes, April 15, 2002: “The prospect of a Brave New World creates strange bedfellows, including us, a hawkish Reagan Republican and a dovish left intellectual and activist. But the issues of the biotech age invite us to think anew. Issue No. 1: human cloning. Humans have always thought of their children as a gift bestowed by God or a beneficent nature. In its place, the new cloned progeny would become the ultimate shopping experience, designed in advance, produced to specification and purchased in the biological marketplace. A child would no longer be a unique creation. Human cloning opens the door to a commercial eugenics civilization. Life science companies already have patented both human embryos and stem cells, giving them ownership and control of a new form of reproductive commerce with frightening implications for the future of society. We should not be fooled about the stakes. This is the first major test of the biotech age, a moment of decision for a civilization that may have gone too far already in the commercialization and destruction of the human and ecological worlds.”

20 See Francis Fukuyama, Our Posthuman Future: Consequences of the Biotechnology Revolution (2002).

21 Freud explores the polarities of emotion within love and hate in The Ego and the Id (1989).

21 See Matt Ridley, Nature via Nurture: Genes, Experience, and What Makes Us Human (2003).

22 The Clarence Darrow quotation comes from his closing argument for the defense in the Leopold-Loeb murder trial, republished in Famous American Jury Speeches (1925). From page 1050: “I know that one of two things happened to Richard Loeb; that this terrible crime was inherent in his organism, and came from some ancestor, or that it came through his education and his training after he was born.”

For modern discussions of biological propensity to criminality, see Sharon S. Ishikawa and Adrian Raine’s chapter, “Behavioral genetics and crime,” in The Neurobiology of Criminal Behavior 4, edited by J. Glicksohn (2002); and Adrian Raine, “Biosocial studies of antisocial and violent behavior in children and adults: A review,” Journal of Abnormal Child Psychology 30, no 4 (August 2002).

22 Statistics on the incidence of disability occur on page 25 of Paul T. Jaeger and Cynthia Ann Bowman, Understanding Disability: Inclusion, Access, Diversity, and Civil Rights (2005).

22 The quotation by Tobin Siebers occurs on page 176 of Disability Theory (2008).

23 The idea that the most effortful years of dealing with a child with special needs are the first decade of his life, when the situation is still novel and confusing; the second decade, because it is adolescence; and the last decade of the parents’ life, when they are old and weak and worry acutely about what will happen to their child after they are gone, is described as the U-shaped stress graph—high at the beginning and at the end. See the discussion by Marsha Mailick Seltzer and her colleagues in their chapter, “Midlife and later life parenting of adult children with mental retardation,” in The Parental Experience in Midlife, edited by Carol Ryff and Marsha Mailick Seltzer (1996), pages 459–532.

23 The quotation from Simon Olshansky (“Most parents who have a mentally defective child . . .”) occurs on page 190 of his paper “Chronic sorrow: A response to having a mentally defective child,” Social Casework 43, no. 4 (1962).

23 Aaron Antonovsky discusses the “sense of coherence” extensively in Health, Stress, and Coping (1980).

23 The quotation from Ann Masten (“. . . the ordinariness of the phenomenon”) occurs on page 227 of her paper “Ordinary magic: Resilience processes in development,” American Psychologist 56, no. 3 (March 2001).

24 Parents reported deterioration of their health due to caregiving demands in Bryony A. Beresford, “Resources and strategies: How parents cope with the care of a disabled child,” Journal of Child Psychology & Psychiatry 35, no. 1 (?January 1994).

24 The study finding cellular alteration in longtime caretakers is Elissa Epel et al., “Accelerated telomere shortening in response to life stress,” Proceedings of the National Academy of Sciences 101, no. 49 (December 2004).

24 The statistic that fathers who described a significant caregiving burden died younger than fathers with a lighter caregiving burden appears on page 204 of Cognitive Coping, Families and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), in Tamar Heller’s chapter “Self-efficacy coping, active involvement, and caregiver well-being throughout the life course among families of persons with mental retardation,” citing B. Farber, L. Rowitz, and I. DeOllos, “Thrivers and nonsurvivors: Elderly parents of retarded offspring” (1987), paper presented at the annual meeting of the American Association on Mental Deficiency, Detroit.

24 The study in which 94 percent of parent-participants reported that they were getting along as well as most other people is Douglas A. Abbott and William H. Meredith, “Strengths of parents with retarded children,” Family Relations 35, no. 3 (July 1986).

24 The quotation about increased marital closeness and empathy occurs in Glenn Affleck and Howard Tennen’s chapter, “Cognitive adaptation to adversity: Insights from parents of medically fragile infants,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), page 138.

24 The study in which participants overwhelmingly reported positive parenting experiences is Allen G. Sandler and Lisa A. Mistretta, “Positive adaptation in parents of adults with disabilities,” Education & Training in Mental Retardation & Developmental Disabilities 33, no. 2 (June 1998).

24 Glenn Affleck and Howard Tennen compare optimistic and pessimistic parents in the chapter “Cognitive adaptation to adversity: Insights from parents of medically fragile infants,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), page 139.

24 See Miguel de Unamono, The Tragic Sense of Life in Men and Nations (1977), page 5: “It is not usually our ideas that make us optimists or pessimists, but our optimism or pessimism—of perhaps physiological or pathological origin, the one as well as the other—that makes our ideas.”

24 The comparative happiness study is P. Brickman, D. Coates, and R. Janoff-Bulman, “Lottery winners and accident victims: Is happiness relative?,” Journal of Personal & Social Psychology 36, no. 8 (August 1978); the subject is the central theme of Daniel Gilbert, Stumbling on Happiness (2006).

24 See Martha Nibley Beck, Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic (1999).

24 The quotation from Clara Claiborne Park (“. . . it is still love”) occurs on page 267 of The Siege (1967).

25 The quotation from the unnamed mother (“This thought runs like a bright golden thread . . .”) comes from page 56 of Mrs. Max A. Murray’s 1959 article, “Needs of parents of mentally retarded children,” reprinted in Families and Mental Retardation, edited by Jan Blacher and Bruce L. Baker (2002).

25 Marty Wyngaarden Krauss and Marsha Mailick Seltzer catalog pitfalls and resources for parents of disabled children in “Coping strategies among older mothers of adults with retardation: A life-span developmental perspective,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), page 177.

25 See, for example, Kate Scorgie and Dick Sobsey, “Transformational outcomes associated with parenting children who have disabilities,” Mental Retardation 38, no. 3 (June 2000).

25 See, for example, Robert M. Hodapp and Diane V. Krasner, “Families of children with disabilities: Findings from a national sample of eighth-grade students,” Exceptionality 5, no. 2 (1995); Rosalyn Roesel and G. Frank Lawlis, “Divorce in families of genetically handicapped/mentally retarded individuals,” American Journal of Family Therapy 11, no. 1 (Spring 1983); Lawrence J. Shufeit and Stanley R. Wurster, “Frequency of divorce among parents of handicapped children,” ERIC Document Reproduction Service no. ED 113 909 (1975); and Don Risdal and George H. S. Singer, “Marital adjustment in parents of children with disabilities: A historical review and meta-analysis,” Research & Practice for Persons with Severe Disabilities 29, no. 2 (Summer 2004). Risdal and Singer’s meta-study found that “there is a detectable overall negative impact on marital adjustment, but this impact is small and much lower than would be expected given earlier assumptions about the supposed inevitability of damaging impacts of children with disabilities on family well-being. For this study a positive effect size indicates that the existence of a disability in the family is positively correlated with an increased level of marital strain. The effect size obtained in the current study is relatively small. This finding does not support an older view that children with disability cause severe family strain in almost all families. However, small effect sizes can still indicate the existence of important problems. When viewed in terms of the percentage of marriages that end in divorce in the two groups, there is an average increase of 5.97%o (range 2.9–6.7%) among families of children with disabilities. The studies that provide the best evidence based upon large sample sizes and the use of unselected population samples are the studies conducted by Hodapp and Krasner (1995), with a percentage increase in divorce of 5.35%, and by Witt et al. (2003), with an increase of 2.9%. The former study focused on families of children with developmental disabilities and the latter on families of children with a wider range of disabilities. including chronic illness. While these increases are much smaller than previously assumed, they do indicate the existence of marital difficulties and the need for better forms of family support for some families of children with disabilities.”

25 Dubious professionals abound in Jeanne Ann Summers, Shirley K. Behr, and Ann P. Turnbull, “Positive adaptation and coping strengths of families who have children with disabilities,” in Support for Caregiving Families: Enabling Positive Adaptation to Disability, edited by George H. S. Singer and Larry K. Irvin (1989), page 29.

25 The quotation from the mother exasperated by her encounters with dubious professionals occurs in Janet Vohs, “On belonging: A place to stand, a gift to give,” in Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993).

26 For an in-depth exploration of institutionalization in the United States and campaigns to marshal support for families’ efforts to care for their disabled children at home, see Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (1993).

26 Geraldo Rivera’s 1972 investigation of conditions at the Willowbrook State School in Staten Island is included in the DVD video documentary Unforgotten: Twenty-Five Years After Willowbrook (2008).

26 The quoted description of conditions at Willowbrook comes from John J. O’Connor, “TV: Willowbrook State School, ‘the Big Town’s leper colony,’New York Times, February 2, 1972.

26 The phrase “mental bed-sores” appears in Sinclair Lewis’s 1917 novel, The Job, describing a state of resigned malaise similar to that experienced by long-term institutionalized patients: “While Mr. Schwirtz stayed home and slept and got mental bed-sores and drank himself to death—rather too slowly—on another fifty dollars which he had borrowed after a Verdun campaign, Una was joyous to be out early, looking over advertisements, visiting typewriter companies’ employment agencies.”

Four decades later, in what was likely an instance of great minds thinking alike, Russell Barton used the same term. From page 7 of Institutional Neurosis (1959): “Institutional Neurosis is like a bed-sore. It results from factors other than the illness bringing the patient into hospital. It is, so to speak, a mental bed-sore.” Barton attributed the condition to “the Seven Deadly Sins of Institutions: loss of contact with the outside world, enforced idleness, bossiness of medical and nursing staff, loss of friends and personal possessions, excessive use of drugs, poor ward atmosphere, and loss of prospects outside the institution”; see his paper “The institutional mind and the subnormal mind,” Journal of Mental Subnormality 7 (1961). For a restatement of Barton’s thesis (sans the “mental bed-sores” expression), see Gary L. Wirt’s paper “Institutionalism revisited: Prevalence of the institutionalized person,” Psychiatric Rehabilitation Journal 22, no. 3 (Winter 1999).

26 The observation about the “highly restrictive manner” in which many families find themselves living is made by Jan Blacher in “Sequential stages of parental adjustment to the birth of a child with handicaps: Fact or artifact?,” Mental Retardation 22, no. 2 (April 1984).

27 The care of disabled people in preindustrial society is discussed on pages 2-3 of Lennard Davis, Enforcing Normalcy: Disability, Deafness, and the Body (1995).

27 Adolf Hitler is quoted on page 33 of Exploring Disability: A Sociological Introduction, edited by Colin Barnes, Geof Mercer, and Tom Shakespeare (1999), citing to M. Burleigh, Death and Deliverance: Euthanasia in Germany, 1900–1945 (1994).

27 For a discussion of compulsory sterilization in Europe and the United States, see pages 34-35 of Richard Lynn, Eugenics: A Reassessment (2001).

27 The “Ugly Law” was Section 36034 of the Chicago Municipal Code (repealed 1974). It is discussed at length in Adrienne Phelps Coco, “Diseased, maimed, mutilated: Categorizations of disability and an ugly law in late nineteenth-century Chicago,” Journal of Social History 44, no. 1 (Fall 2010). The full text of the law: “Any person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in this city shall not therein or thereon expose himself or herself to public view under penalty of one dollar for each offense. On the conviction of any person for a violation of this section, if it shall seem proper and just, the fine provided for may be suspended, and such person detained at the police station, where he shall be well cared for, until he can be committed to the county poor house.”

27 The Jim Crow comparison is expounded by Justice Thurgood Marshall in the 1985 Supreme Court decision City of Cleburne, Texas v. Cleburne Living Center, Inc., in which he states of the mentally ill, “A regime of state-mandated segregation and degradation soon emerged that, in its virulence and bigotry, rivaled, and indeed paralleled, the worst excesses of Jim Crow.” The decision can be found in its entirety at http://www.law.cornell.edu/supct/html/historics/USSC_CR_0473_0432_ZX.html. Marshall writes, “The mentally retarded have been subject to a ‘lengthy and tragic history,’ University of California Regents v. Bakke, 438 U.S. 265, 303 (1978) (opinion of POWELL, J.), of segregation and discrimination that can only be called grotesque. During much of the 19th century, mental retardation was viewed as neither curable nor dangerous, and the retarded were largely left to their own devices. By the latter part of the century and during the first decades of the new one, however, social views of the retarded underwent a radical transformation. Fueled by the rising tide of Social Darwinism, the ‘science’ of eugenics, and the extreme xenophobia of those years, leading medical authorities and others began to portray the ‘feeble-minded’ as a ‘menace to society and civilization . . . responsible in a large degree for many, if not all, of our social problems.’ A regime of state-mandated segregation and degradation soon emerged that, in its virulence and bigotry, rivaled, and indeed paralleled, the worst excesses of Jim Crow. Massive custodial institutions were built to warehouse the retarded for life; the aim was to halt reproduction of the retarded and ‘nearly extinguish their race.’ Retarded children were categorically excluded from public schools, based on the false stereotype that all were ineducable and on the purported need to protect nonretarded children from them. State laws deemed the retarded ‘unfit for citizenship.’”

27 The quotation from Sharon Snyder and David T. Mitchell occurs on page 72 of Cultural Locations of Disability (2006).

27 Figures on educational attainment of disabled children and economic status of disabled adults rely on the discussion on pages 45–49 of Colin Barnes and Geof Mercer, Disability (2003).

28 The Royal College of Obstetricians and Gynaecology’s proposal to establish guidelines for euthanasia of severely ill preemies is discussed in Peter Zimonjic, “Church supports baby euthanasia,” Times, November 12, 2006.

28 The full text of the US Rehabilitation Act of 1973 (29 USC § 701) can be found online at http://www.law.cornell.edu/uscode/text/29/701, and the Americans with Disabilities Act (42 USC § 12101) at http://www.law.cornell.edu/usc-cgi/get_external.cgi?type=pubL&target=101-336.

28 Vice President Biden’s speech is described in “Biden praises Special Olympic athletes,” Spokesman-Review, February 19, 2009.

28 For a scholarly discussion of disability law’s shrinking protections, see Samuel R. Bagenstos, “The future of disability law,” Yale Law Journal 114, no. 1 (October 2004). Note also, for example, the US Supreme Court decision in the case Toyota Motor Manufacturing v. Williams, 534 U.S. 184 (2002) (full text at http://www.law.cornell.edu/supct/html/00-1089.ZO.html), which mandated a narrow interpretation of what constitutes “substantial limitation” of “major life activities.”

28 Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (1963; repr. 1986).

28 The quotation from Susan Burch occurs on page 7 of Signs of Resistance: American Deaf Cultural History, 1900 to World War II (2004).

28 Michael Oliver’s statement “Disability has nothing to do with the body, it is a consequence of social oppression” occurs on page 35 of Understanding Disability: From Theory to Practice (1996).

29 Figures on changes in life expectancy over time can be found in Laura B. Shrestha, “Life Expectancy in the United States,” Congressional Research Service, 2006.

29 The quotation from Ruth Hubbard about abortion for Huntington’s disease occurs on page 93 of her essay “Abortion and disability,” in The Disability Studies Reader, 2nd ed., edited by Lennard Davis (2006).

29 Philip Kitcher is quoted on page 71 of James C. Wilson’s essay “(Re)writing the genetic body-text: Disability, textuality, and the Human Genome Project,” in The Disability Studies Reader, 2nd ed., edited by Lennard Davis (2006).

29 The quotation from Marsha Saxton occurs on pages 110–11 of her essay “Disability rights and selective abortion,” in The Disability Studies Reader, 2nd ed., edited by Lennard Davis (2006).

29 The quotation from Sharon Snyder and David T. Mitchell occurs on page 31 of their book, Cultural Locations of Disability (2006).

29 William Ruddick discusses the “hospitality view” of women in his article “Ways to limit prenatal testing,” in Prenatal Testing and Disability Rights, edited by Adrienne Asch and Erik Parens (2000).

29 The quotation from Laura Hershey comes from her article “Choosing disability,” Ms., July 1994.

30 The quotation from Ruth Hubbard occurs on page 232 of her article “Eugenics: New tools, old ideas,” in Embryos, Ethics, and Women’s Rights: Exploring the New Reproductive Technologies, edited by Elaine Hoffman Baruch, Amadeo F. D’Adamo, and Joni Seager (1988).

30 For criticism of the Human Genome Project, see Mary Jo Iozzio, “Genetic anomaly or genetic diversity: Thinking in the key of disability on the human genome,” Theological Studies 66, no. 4 (December 2005); and James C. Wilson, “(Re)writing the genetic body-text: Disability, textuality, and the Human Genome Project,” in The Disability Studies Reader, 2nd ed., edited by Lennard Davis (2006).

30 Donna Haraway refers to the “act of canonization” on page 215 of her Simians, Cyborgs, and Women: The Reinvention of Nature (1991).

30 Michel Foucault’s reference to “a technology of abnormal individuals” occurs on page 61 of Abnormal: Lectures at the Collège de France, 1974–1975 (2003); his reference to “physical vigor and the moral cleanliness of the social body” occurs on page 54 of The History of Sexuality, vol. 1 (1990); his discussion of error occurs on page 22 of his introduction to Georges Canguilhem, The Normal and the Pathological (1991).

30 All of the quotations in this passage come from Deborah Kent, “Somewhere a mockingbird,” in Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch (2000), pages 57–63.

32 John Hockenberry’s view of “Jerry’s kids” occurs on page 36 of Moving Violations: War Zones, Wheelchairs and Declarations of Independence (1996).

32 Rod Michalko likens helping to name-calling on page 20 of The Difference That Disability Makes (2002).

32 Arlene Mayerson discusses the danger of “benevolence” to the disabled in Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.

32 Results of the happiness study are reported in David Kahneman et al., “Would you be happier if you were richer? A focusing illusion,” Science 312, no. 5782 (June 30, 2006).

33 The quotation from Steven R. Smith occurs on page 26 of his paper “Social justice and disability: Competing interpretations of the medical and social models,” in Arguing About Disability: Philosophical Perspectives, edited by Kristjana Kristiansen, Simo Vehmas, and Tom Shakespeare (2009).

34 For more information on the “pro-ana” and “pro-mia” movement, see Virginia Heffernan, “Narrow-minded,” New York Times, May 25, 2008.

34 The quotation from Lucy Grealy occurs on of page 157 of her Autobiography of a Face (1994).

35 See Dylan M. Smith et al., “Happily hopeless: Adaptation to a permanent, but not to a temporary, disability,” Health Psychology 28, no. 6 (November 2009).

35 The failure-to-diagnose suit is described in Rebecca Allison, “Does a cleft palate justify an abortion?,” Guardian, December 2, 2003.

35 The quotation from the mother of the child with a cleft palate comes from Barry Nelson, “Born with just a little difference,” Northern Echo, December 2, 2003.

35 The quotation from Bruce Bauer occurs in Eric Zorn, “At 15, Lauren is coming forward for kids like her,” Chicago Tribune, April 24, 2003.

35 Chris Wallace is profiled in Chris Dufresne, “Amazing feat,” Los Angeles Times, October 8, 1997.

36 The word technoluxe was coined by journalist Elizabeth Lamont to describe a certain class of surgical procedures; see her article “The flawless foot,” Vogue, March 2003; and Arthur W. Frank’s commentary, “Emily’s scars: Surgical shapings, technoluxe, and bioethics,” Hastings Center Report 34, no. 2 (March/April 2004). For a recent discussion of cosmetic foot surgery, see Melinda Beck’s article “Toe the line: Doctors fight cosmetic foot surgery,” Wall Street Journal, July 27, 2010.

36 The quotation from Joanne Green comes from her article “The reality of the miracle: What to expect from the first surgery,” Wide Smiles, 1996.

36 The passage by Alice Domurat Dreger occurs on pages 55–57 of One of Us: Conjoined Twins and the Future of Normal (2004). It has been condensed. In full: “But parents may also seek surgical fixes because of the genuine (and typically unaddressed) anguish they are feeling about their own identities. For when a child is born with an unusual anatomy, not only is that child’s identity thrown into question, but so are the identities of his parents. Parents whose child displays an uncertain identity—whose child may not be clearly one or two, or may have an unfamiliar sort of face, or may have genitals that don’t look like the usual male or female—these parents suddenly find themselves unsure about their own social and familial role. How are they supposed to act? What are they supposed to think, feel, do, say? They know only how normal parents are supposed to behave, but they can’t be normal parents if they don’t have a normal child. They seek surgical reconstruction of a normal child in part because they feel like they will know how to be a parent to that child, whereas they often feel uncertain how to be a parent to this one.”

36 The French study finding an inverse relationship between tolerance for disability and socioeconomic status is Annick-Camille Dumaret et al., “Adoption and fostering of babies with Down syndrome: A cohort of 593 cases,” Prenatal Diagnosis 18, no. 5 (May 1998).

36 The American study finding attitudinal differences toward disability among different socioeconomic strata is Elizabeth Lehr Essex et al., “Residential transitions of adults with mental retardation: Predictors of waiting list use and placement,” American Journal of Mental Retardation 101, no. 6 (May 1997).

36 Studies on racial and socioeconomic disparities in rates of out-of-home placement of disabled children include the above-cited studies by Dumaret and Essex; Jan Blacher, “Placement and its consequences for families with children who have mental retardation,” in When There’s No Place Like Home: Options for Children Living Apart from Their Natural Families, edited by Jan Blacher (1994); Frances Kaplan Grossman, Brothers and Sisters of Retarded Children: An Exploratory Study (1972); Robert Hanneman and Jan Blacher, “Predicting placement in families who have children with severe handicaps: A longitudinal analysis,” American Journal on Mental Retardation 102, no. 4 (January 1998); and Tamar Heller and Alan Factor, “Permanency planning for adults with mental retardation living with family caregivers,” American Journal on Mental Retardation 96, no. 2 (September 1991).

37 The quotation from Jim Sinclair (“. . . this is what we hear when you pray for a cure . . .”) occurs in his 1993 essay, “Don’t mourn for us,” at http://www.jimsinclair.org/dontmourn.htm.

37 The quotation from Aimee Mullins occurs in Susannah Frankel, “Body beautiful,” Guardian, August 29, 1998.

37 Bill Shannon is profiled in Bill O’Driscoll, “Turning the tables,” Pittsburgh City Paper, March 29, 2007.

38 See “Oscar Pistorius hopes to have place at London Olympics,” British Broadcasting Corporation, March 17, 2012; “Oscar Pistorius: The ‘Blade Runner’ who is a race away from changing the Olympics,” Associated Press/Washington Post, May 16, 2012; and Tim Rohan, “Pistorius will be on South Africa’s Olympic team,” New York Times, July 4, 2012.

39 See Adam Doerr, “The wrongful life debate,” Genomics Law Report, September 22, 2009.

39 The quotation from the French court decision comes from Wim Weber, “France’s highest court recognises ‘the right not to be born,’Lancet 358, no. 9297 (December 8, 2001); the aftermath is described in Lynn Eaton, “France outlaws the right to sue for being born,” British Medical Journal 324, no. 7330 (January 19, 2002).

39 See Adam Doerr, “The wrongful life debate,” Genomics Law Report, September 22, 2009; Ronen Perry, “It’s a wonderful life,” Cornell Law Review 93 (2008); and the decision in Turpin v. Sortini, 31 Cal. 3d 220, 643 P.2d 954 (May 3, 1982); that California Supreme Court case pertained to a suit with the deaf child named as plaintiff. The full text of the decision can be found on the Stanford Law School website, http://scocal.stanford.edu/opinion/turpin-v-sortini-30626.

39 Curlender v. BioScience Laboratories, 106 Cal. App. 3d 811, 165 Cal. Rptr. 477 (1980). The decision can be found in its entirety at http://law.justia.com/cases/california/calapp3d/106/811.html.

39 The quotation from the wrongful-life lawsuit brought by the parents of a child with Tay-Sachs occurs in the court decision in Miller v. HCA, Inc., 118 S.W. 3d 758 (Tex. 2003). The decision can be read in its entirety on the website of the Supreme Court of Texas, http://www.supreme.courts.state.tx.us/historical/2003/sep/010079.pdf.

42 The quotation from Nigel Andrews comes from his review “Glowing wonder of an Anatolian epiphany,” Financial Times, March 15, 2012.

42 The quotation about increased growth and maturity in parents of disabled children comes from Richard P. Hastings et al., “Factors related to positive perceptions in mothers of children with intellectual disabilities,” Journal of Applied Research in Intellectual Disabilities 15, no. 3 (September 2002).

42 See Kate Scorgie and Dick Sobsey, “Transformational outcomes associated with parenting children who have disabilities,” Mental Retardation 38, no. 3 (?June 2000).

42 The study of mothers who saw advantages in their parenting experience is described on page 138 of Cognitive Coping, Families, and Disability, edited by Ann P. Turnbull, Joan M. Patterson, and Shirley K. Behr (1993), in Glenn Affleck and Howard Tennen’s chapter, “Cognitive adaptation to adversity: Insights from parents of medically fragile infants.”

42 The study comparing developmental outcomes in children of mothers who tried to find meaning in their experience is described on page 135 of Infants in Crisis: How Parents Cope with Newborn Intensive Care and Its Aftermath, edited by Glenn Affleck, Howard Tennen, and Jonelle Rowe (1991).

44 The quotation from Tobin Siebers about inclusion occurs on page 183 of Disability Theory (2008).

45 The quotation from Roy McDonald comes from Danny Hakim, Thomas Kaplan, and Michael Barbaro, “After backing gay marriage, 4 in G.O.P. face voters’ verdict,” New York Times, July 4, 2011; the quotation from Jared Spurbeck comes from his article “NY senator’s grandkids made him realize ‘gay is OK,’” Yahoo! News, June 26, 2011.

45 Personal communication with Doug Wright.

46 See Ann Whitcher-Gentzke, “Dalai Lama brings message of compassion to UB,” UB Reporter, September 21, 2006.

47 This Western naïveté about nirvana was explained to me by Robert Thurman in 2006.

47 Jal?l al-D?n R?m? (Maulana), The Essential Rumi (1995), page 142: “Don’t turn away. Keep your gaze on the bandaged place. That’s where the light enters you.”

II: Deaf

49 “I was planning to write on the Deaf??”: My article “Defiantly deaf??” was published in the New York Times Magazine, August 29, 1994.

49 Interactions between protesters and Lexington Center for the Deaf administrators were described in David Firestone, “Deaf students protest new school head,” New York Times, April 27, 1994.

49 An index of state schools for the deaf in the United States can be found on the Laurent Clerc National Deaf Education Center’s website, http://clerccenter .gallaudet.edu/Clerc_Center/Information_and_Resources/Info_to_Go/Resources/Superintendents_of_Schools_for_the_Deaf_Contact_Information.html.

49 Many have written eloquently and passionately on Deaf history and culture, and the dilemmas facing the Deaf in society. Seminal anthologies and analyses include Humphrey-Dirksen Bauman’s Open Your Eyes: Deaf Studies Talking (2008); Beryl Lieff Benderly’s Dancing Without Music: Deafness in America (1990); Lois Bragg’s Deaf World: A Historical Reader and Primary Sourcebook; Paddy Ladd’s Understanding Deaf Culture: In Search of Deafhood; Kristin Lindgren et al.’s Signs and Voices: Deaf Culture, Identity, Language, and Arts; Carol Padden and Tom Humphries’s Deaf in America: Voices from a Culture and Inside Deaf Culture; and Susan D. Rutherford’s “The culture of American deaf people,” Sign Language Studies 59 (Summer 1998). Journalistic coverage of the subject includes Anita Manning’s “The changing deaf culture,” USA Today, May 2, 2000; and Cathy Young’s “Radicalism in the deaf culture,” Boston Globe, November 6, 2006.

50 Figures on the percentage of deaf children with hearing parents come from Ross E. Mitchell and Michael A. Karchmer, “Chasing the mythical ten percent: Parental hearing status of deaf and hard of hearing students in the United States,” Sign Language Studies 4, no. 2 (Winter 2004).

51 See St. Augustine, Contra Julianum: “We acknowledge, indeed, how much pertains to our own transgressions: from what source of culpability does it come that innocent ones deserve to be born sometimes blind, sometimes deaf, which defect, indeed, hinders faith itself, by the witness of the Apostle, who says, ‘Faith comes by hearing (Rom. X, 17).’” This passage is from Augustini, Sancti Aurelii, Hipponensis Episcopi Traditio Catholica, Saecula IV–V, Opera Omnia, Tomus Decimus, Contra Julianum, Horesis Pelagianea Defensorum, Liber Tertius, Caput IV–10. Excudebatur et venit apud J. P. Migne editorem, 1865, cited in Ruth E. Bender, The Conquest of Deafness: A History of the Long Struggle to Make Possible Normal Living to Those Handicapped by Lack of Normal Hearing (1970), page 27.

It is worth noting, however, that others have interpreted the passage from Romans differently. In Deaf Liberation Theology, Hannah Lewis wrote, “This inability to conceive of a full and legally competent language except in terms of speech and hearing is reflected in the language used in much of the New Testament about the word of God. Romans 10:17 for example says: ‘So faith comes from what is heard and what is heard comes from the word of Christ.’ This verse read literally suggests that the writer did not include d/Deaf people who communicate visually as being able to develop a personal faith in Christ in response to the grace mediated through his word. Augustine is one early theologian who appears to interpret this passage to argue that d/Deaf people cannot become believers. This belief of Augustine, referred to in every major work on Deaf people, has always been seen as either justifying the prioritizing of teaching of speech and lip-reading to Deaf children above all else, or as an insurmountable obstacle for Deaf people in their relationship to Christianity. However, Per Erikson, citing the work of Christer Degsell, an Augustinian scholar, concludes that what Augustine really meant was that d/Deaf people could not acquire faith by listening to spoken sermons the way hearing people did (and which was the major form of knowledge transmission in a world where almost no one could read); they had to find alternative means for accessing and transmitting the Gospel. In another place, he goes on to say, Augustine refers to gestures and signs as verba visibilia or visible words, so presumably he thought deaf people could be saved if the Gospel was transmitted to them through signs.”

Ron Friedrich, in “St. Augustine on deafness,” Mustard Seed, March 2011. at http://www.christdeaf.org/newsletter/2011/march/pastor.htm, writes, “What St. Augustine actually said was that congenital deafness ‘hinders faith.’ Society in his day lacked systematic programs for deaf education and language training, so in that sense, he was right. He has often been misquoted to say that deaf people could not have saving faith, since Romans 10:17 says “Faith comes by hearing . . .” disregarding the rest of that verse which describes “hearing” as a spiritual picture for receiving God’s Word. Receiving God’s Word can come just as well by seeing. St. Augustine did not assign Deaf people automatically to hell.

“St. Augustine’s comment about deafness was a side comment in a refutation against Pelagius who said that people are born morally neutral with the capability of self perfection, so that neither God’s grace nor Christ’s sacrifice are necessary for salvation. St. Augustine asserted that all people are born sinful and are in need of Christ’s sacrifice and God’s grace. He said that Adam’s Fall infects all mankind, and among the effects of sin are death and disease. Death and disease don’t happen only because we make wrong moral choices. Augustine reminds us that a person cannot make a wrong moral choice to cause himself to have a birth defect. Rather, we inherit a sinful nature from our parents, and that sin works its effects (disease and death) in us from the moment of conception, which can lead to birth defects, like blindness and deafness, ‘which defect, indeed, hinders faith itself.’”

Samar Sinha, in “God, His agents and Deafness,” Lingua Parasitica, October 11, 2009, http://samarsinha.blogspot.com/2009/10/god-his-agents-and-deafness.html, writes, “If the Old Testament reflects the attitudes prevalent at the time of Moses, then societally, deafness was perceived as a sin, a social menace, and hence, the deaf were cursed, damned and shunted aside. In fact, Isaiah’s prophesies clearly reflect a vision of society where sound and hearing was central and it was free from deafness and deaf people. This is a view shared by the New Testament, which, although it no longer conceives of deafness as a grand design, emphasizes the social inclination towards orality and aurality viz., the healing powers of Jesus. Such ‘miracles’ seek to ‘cure’ deafness and install speech and hearing among the deaf. The extreme view of all, however, is to be found in Paul’s epistle to the Romans (10:17), where in a single sentence, the deaf are denied the possibility of faith: ‘So then faith cometh by hearing, and hearing by the word of God.’

“These attitudes established the centrality of speech and hearing in the Christian world-view in the centuries that followed. Catholic theologists accepted the official doctrine; in the words of Saint Augustine (354–430 A.D.), deafness ‘is a hindrance to faith’ because the deaf cannot hear the word of God. At the same time, a dialogue in Chapter Eighteen of De quantitate animae liber unus reflects Augustine’s optimism about deaf community and sign language, as can be seen in his question: ‘What does it matter, as he grows up, whether he speaks or makes gestures, since both these pertain to the soul?’ Augustine enlisted the deaf to spread his mission and membership, but his view that deaf people could learn through sign (Augustine refers to ‘bodily movements,’ ‘signs,’ and ‘gestures’) and were thus able to receive faith and salvation was ignored, and was not part of the official doctrine and practice of the Catholic Church.”

Kirk Alan VanGilder, in “Making sadza with deaf Zimbabwean women: A missiological reorientation of practical theological method toward self-theologizing agency among subaltern communities,” (doctoral dissertation, Boston University, 2011), writes, “Perhaps the most damaging aspect of hearing theological mis-readings of Deaf lives has been the way in which Romans 10:17 has been interpreted. The New Revised Standard Version translates this verse as, ‘So faith comes from what is heard, and what is heard comes through the word of Christ.’ 248 Traditionally, this verse has been interpreted to mean that Deaf people were incapable of faith due to a lack of the ability to hear what is told in the word of Christ. Many Deaf studies writers have attributed this interpretation to the early Christian theologian Augustine. (9 See John Vickrey van Cleve and Barry A. Crouch, A Place of Their Own: Creating the Deaf Community in America [Washington DC: Gallaudet University Press, 1989], p. 4.) However, the attribution of this interpretation to Augustine is a misperception based on a misquotation that has been carried through the centuries. As early as 1912, the American Annals of the Deaf published an article explaining how this misquotation occurred in the writings of a Spanish proponent for oral methods of educating deaf children. Augustine’s actual views on deaf people and signed language are actually very positive and commending of its capability as a language of the soul. However incorrect it is to attribute this oralist interpretation of Romans 10:17 to Augustine, it remains a commonly held interpretation in church history and is often bolstered with Augustine’s authoritative. Such readings of scripture have created numerous responses from Christian authorities in the history of deaf education preventing the use of signed languages causing a breach of trust between the church and Deaf people that still exists.”

51 Education of deaf children by noble families is the subject of Susan Plann, A Silent Minority: Deaf Education in Spain, 1550–1835 (1997). A new historical anthology on the subject contains “documents and literature from the fifteenth century to the present”: Benjamin Fraser, editor, Deaf History and Culture in Spain: A Reader of Primary Documents (2009). Additionally, the following article describes the sign language developed in the Ottoman empire: M. Miles, “Signing in the Seraglio: Mutes, dwarves, and gestures at the Ottoman Court 1500–1700,” Disability Handicap and Society 15, no. 1 (2000). General sources on deafness in history include James Roots’s chapter, “Historical overview of the deaf,” in The Politics of Visual Language: Deafness, Language Choice, and Political Socialization (1999); John Vickrey Van Cleve’s anthologies, Deaf History Unveiled: Interpretations from the New Scholarship (1999) and The Deaf History Reader (2007); and The Oxford Handbook of Deaf Studies, Language and Education, edited by Marc Marschark and Patricia Elizabeth Spencer (2007).

51 The history of the deaf in France and the work of the Abbé de l’Épée is the subject of James R. Knowlson, “The idea of gesture as a universal language in the XVIIth and XVIIIth centuries,” Journal of the History of Ideas 26, no. 4 (OctoberDecember 1965); and Anne T. Quartararo, “The perils of assimilation in modern France: The Deaf community, social status, and educational opportunity, 1815–1870,” Journal of Social History 29, no. 1 (Autumn 1995).

51 See Phyllis Valentine’s chapter “Thomas Hopkins Gallaudet: Benevolent paternalism and the origins of the American Asylum,” in Deaf History Unveiled: Interpretations from the New Scholarship, edited by John Vickrey Van Cleve (1999), pages 53–73.

51 For a detailed history of the Deaf community on Martha’s Vineyard, see Nora Ellen Groce, Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard (1985).

51 The story of Gallaudet University is told in Brian H. Greenwald and John Vickrey Van Cleve, A Fair Chance in the Race of Life: The Role of Gallaudet University in Deaf History (2010).

51 Alexander Graham Bell set forth his proposals in “Memoir upon the formation of a deaf variety of the human race,” a paper presented to the National Academy of Sciences on November 13, 1883, and published in the 1884 Memoirs of the National Academy of Sciences; and in “Historical notes concerning the teaching of speech to the deaf,” Association Review 2 (February 1900).

51 Thomas Edison’s interest in the oralist movement sprang in part from his experience as a hearing-impaired person. Edison served for a time as a member of the Advisory Board of the Volta Bureau, the organization founded by Alexander Graham Bell to promote education in “speech reading, speech and hearing” to the deaf; see John A. Ferrall’s article “Floating on the wings of silence with Beethoven, Kitto, and Edison,” Volta Review 23 (1921), pages 295–96.

51 Bell and the ascendancy of oralism are discussed in Douglas C. Baynton, Forbidden Signs: American Culture and the Campaign against Sign Language (1996); Carol Padden and Tom Humphries, Inside Deaf Culture (2005); and John Vickrey Van Cleve, Deaf History Unveiled: Interpretations from the New Scholarship (1999).

52 The quotation from George Veditz appears in Carol Padden and Tom Humphries, Deaf in America: Voices from a Culture (1988), page 36.

52 Patrick Boudreault is an assistant professor at California State University, Northridge. All quotations from Boudreault come from my interview with him in 2008 and subsequent communications.

52 Aristotle’s conclusions about the comparative intelligence of the deaf and the blind were set forth in The History of Animals and On Sense and the Sensible. Aristotle contended that “of persons destitute from birth of either sense, the blind are more intelligent than the deaf and dumb” because “rational discourse is a cause of instruction in virtue of its being audible.” These quotations occur at Sense and Sensibilia 437a, 3–17, on page 694 of The Complete Works of Aristotle: The Revised Oxford Translation, edited by J. Barnes (1984).

From The History of Animals, book 4, chapter 9: “Viviparous quadrupeds utter vocal sounds of different kinds, but they have no power of converse. In fact, this power, or language, is peculiar to man. For while the capability of talking implies the capability of uttering vocal sounds, the converse does not hold good. Men that are born deaf are in all cases also dumb; that is, they can make vocal sounds, but they cannot speak. Children, just as they have no control over other parts, so have no control, at first, over the tongue; but it is so far imperfect, and only frees and detaches itself by degrees, so that in the interval children for the most part lisp and stutter.”

From On Sense and the Sensible, section 1, part 1: “The senses which operate through external media, viz. smelling, hearing, seeing, are found in all animals which possess the faculty of locomotion. To all that possess them they are a means of preservation; their final cause being that such creatures may, guided by antecedent perception, both pursue their food, and shun things that are bad or destructive. But in animals which have also intelligence they serve for the attainment of a higher perfection. They bring in tidings of many distinctive qualities of things, from which the knowledge of truth, speculative and practical, is generated in the soul.”

“Of the two last mentioned, seeing, regarded as a supply for the primary wants of life, and in its direct effects, is the superior sense; but for developing intelligence, and in its indirect consequences, hearing takes the precedence. The faculty of seeing, thanks to the fact that all bodies are coloured, brings tidings of multitudes of distinctive qualities of all sorts; whence it is through this sense especially that we perceive the common sensibles, viz. figure, magnitude, motion, number: while hearing announces only the distinctive qualities of sound, and, to some few animals, those also of voice. Indirectly, however, it is hearing that contributes most to the growth of intelligence. For rational discourse is a cause of instruction in virtue of its being audible, which it is, not directly, but indirectly; since it is composed of words, and each word is a thought-symbol. Accordingly, of persons destitute from birth of either sense, the blind are more intelligent than the deaf and dumb.”

Additionally, in The Politics, Aristotle declared, “With regard to the choice between abandoning an infant or rearing it, let there be a law that no cripple child be reared” (page 443 of the 1984 Penguin Books edition).

52 William Stokoe’s Sign Language Structure: An Outline of the Visual Communication Systems of the American Deaf was originally published in 1960 by the University of Buffalo’s Department of Anthropology and Linguistics and was reprinted in the Journal of Deaf Studies & Deaf Education 10, no. 1 (Winter 2005).

52 Hemispheric lateralization and sign language are discussed by Oliver Sacks in Seeing Voices: A Journey into the World of the Deaf (1989), pages 93–111; and in Heather P. Knapp and David P. Corina’s chapter, “Cognitive and neural representations of language: Insights from sign languages of the deaf,” in Kristin A. Lindgren et al., Signs and Voices: Deaf Culture, Identity, Language, and Arts (2008), pages 77–89.

52 The effect of left-hemisphere damage on the ability to produce Sign is the subject of Ursula Bellugi et al., “Language, modality, and the brain,” in Brain Development and Cognition, edited by M. H. Johnson (1993); and Gregory Hickock, Tracy Love-Geffen, and Edward S. Klima, “Role of the left hemisphere in sign language comprehension,” Brain & Language 82, no. 2 (August 2002).

52 Studies demonstrating that people who learn Sign in adulthood tend to use the visual part of their brain more include Madeleine Keehner and Susan E. Gathercole, “Cognitive adaptations arising from nonnative experience of sign language in hearing adults,” Memory & Cognition 35, no. 4 (June 2007).

53 The Peter and the Wolf study—J. Feijoo, “Le foetus, Pierre et le Loup”—originally appeared in L’Aube des Sens, edited by E. Herbinet and M. C. Busnel (1981), and was subsequently cited by Marie-Claire Busnel, Carolyn Granier-Deferre, and Jean-Pierre Lecanuet, “Fetal audition,” Annals of the New York Academy of Sciences 662, Developmental Psychobiology (October 1992).

Japanese acoustics researchers Yoichi Ando and Hiroaki Hattori described babies’ prenatal acclimation to airport noise in “Effects of intense noise during fetal life upon postnatal adaptability,” Journal of the Acoustical Society of America 47, no. 4, pt. 2 (1970). A follow-up study by Ando and Hattori found a positive correlation of airport noise with low birth weight: “Statistical study on the effects of intense noise during human fetal life,” Journal of Sound & Vibration 27, no. 1 (March 1973); yet another established that airport noise negatively impacts children’s growth: Lawrence M. Schell and Yoichi Ando, “Postnatal growth of children in relation to noise from Osaka International Airport,” Journal of Sound & Vibration 151, no. 3 (December 1991).

53 Newborn language preferences are discussed in Jacques Mehler et al., “A precursor of language acquisition in young infants,” Cognition 29, no. 2 (July 1988); and Christine Moon, Robin Panneton Cooper, and William P. Fifer, “Two-day-olds prefer their native language,” Infant Behavior and Development 16, no. 4 (October–December 1993).

53 “Declining non-native phoneme perception” has been a major focus of study by infant psychologist Janet F. Werker of the University of Ottawa; her academic reports on the subject include “Cross-language speech perception: Evidence for perceptual reorganization during the first year of life,” Infant Behavior & Development 25, no. 1 (January–March 2002); and “Infant-directed speech supports phonetic category learning in English and Japanese,” Cognition 103, no. 1 (April 2007). A less technical description of her work can be found in her article “Becoming a native listener,” American Scientist 77, no. 1 (January–February 1989).

53 For information on early language development, see Robert J. Ruben, “A time frame of critical/sensitive periods of language development,” Acta Otolaryngologica 117, no. 2 (March 1997). Early rapidity in the acquisition of sign language is discussed in John D. Bonvillian et al., “Developmental milestones: Sign language acquisition and motor development,” Child Development 54, no. 6 (December 1983). Studies on the decline in the brain’s ability to acquire language over time include Helen Neville and Daphne Bavelier, “Human brain plasticity: Evidence from sensory deprivation and altered language experience,” Progress in Brain Research 138 (2002); Aaron J. Newman et al., “A critical period for right hemisphere recruitment in American Sign Language processing,” Nature Neuroscience 5, no. 1 (January 2002); Rachel I. Mayberry et al., “Age of acquisition effects on the functional organization of language in the adult brain,” Brain & Language 119, no. 1 (October 2011); and Nils Skotara et al., “The influence of language deprivation in early childhood on L2 processing: An ERP comparison of deaf native signers and deaf signers with a delayed language acquisition,” BMC Neuroscience 13, no. 44 (provisionally published May 3, 2012).

53 The deaf man who had no language at all until the age of twenty-seven is the subject of Susan Schaller, A Man without Words (1995).

53 The estimate of the incidence of hearing impairment in prisoners comes from Katrina Miller, “Population management strategies for deaf and hard-of-hearing offenders,” Corrections Today 64, no. 7 (December 2002). Miller and her colleague McKay Vernon have written extensively on the experience of deaf prisoners; see Katrina Miller and McKay Vernon, “Deaf sex offenders in a prison population,” Journal of Deaf Studies and Deaf Education 8, no. 3 (July 2003); McKay Vernon and Katrina Miller, “Obstacles faced by deaf people in the criminal justice system,” American Annals of the Deaf 150, no. 3 (Summer 2005); and McKay Vernon, “The horror of being Deaf and in prison,” American Annals of the Deaf 155, no. 3 (Summer 2010). For a journalistic report on the subject, see James Ridgway’s “The secret world of deaf prisoners,” Mother Jones, October 2009.

53 The rate of vocabulary acquisition of deaf children of hearing parents is reviewed in Raymond D. Kent, editor, The MIT Encyclopedia of Communication Disorders (2004), pages 336–37: “As measured by parental reports on the MacArthur Communicative Development Inventory (CDI)l, the average hearing child progresses rapidly from an expressive vocabulary of approximately 100 words at 18 months to 300 words at 2 years and 550 words at 3 years (Fenson et al., 1993). In contrast, the average deaf toddler with hearing parents produces about 30 words at 2 years and 200 words at 3 years, whether those words are spoken or signed (Mayne, Yoshinago-Itano, Sedey, and Carey, 2000). Deaf children whose hearing loss was identified by 6 months of age and who have above-average cognitive skills fare best, showing a vocabulary spurt in the third year of life similar to that found in hearing children, though about 6 months later (Mayne et al., 2000). However, even these successful deaf children fall below the 25th percentile for hearing children on norms for the CDI at 30–36 months of age (see also Mayne, Yoshinago-Itano, and Sedey, 2000). Thus, the average 5- to 6-year-old deaf child is some 2 years behind hearing peers in vocabulary size when the child begins the task of learning to read.”

For a current, authoritative review on vocabulary development in deaf children, see John L. Luckner and Christine Cooke’s “A summary of the vocabulary research with students who are deaf or hard of hearing,” American Annals of the Deaf 155, no. 1 (Spring 2010): “Word learning is an incremental process that begins at birth and continues throughout life. Research (e.g., Anglin, 1993; Biemiller, 2005, 2006; Biemiller & Slonim, 2001) suggests that average hearing children acquire the meaning of about 860 root words per year (e.g., desk, sleep, cousin), or about 2.4 root words per day, for a total of approximately 6,000 root words by the end of second grade. The literature consistently suggests that the vocabulary knowledge of students who are deaf or hard of hearing is quantitatively reduced as compared to that of typical hearing peers. More specifically, it has frequently been reported that students who are deaf or hard of hearing are delayed in their acquisition of vocabulary knowledge, have smaller lexicons, acquire new words at slower rates, and have a narrower range of contexts that result in word learning (Cole & Flexer, 2007; Easterbrooks & Estes, 2007; Lederberg, 2003; Lederberg & Spencer, 2001; Marschark & Wauters, 2008; Paul, 2009; Rose, McAnally, & Quigley, 2004; Schirmer, 2000; Trezek, Wang, & Paul, 2010).”

From The Oxford Handbook of Deaf Studies, Language and Education, pages 264–67, “Moeller (2000) assessed receptive vocabulary by administering the Peabody Picture Vocabulary Test (PPVT) to 112 DOH children at 5 years of age with hearing aids and no cognitive impairment. Children had received services from one early intervention program in Nebraska for 6 months and then were placed in an auditory/oral or total communication program (approximately equal proportions), depending on which was ‘determined to be most appropriate to meet the needs of the child and family’ (p. 3). Half of the children scored within one SD of the norms for hearing 5-year-olds. Family involvement and age at intervention were the only factors affecting lexical knowledge, accounting for more than 55% of the variance of language scores. Low involvement by families was devastating and was even more important than age at first intervention. Children whose parents were rated as having ‘ideal’ or ‘good’ involvement with their children’s education (45% of the sample) had language scores comparable to hearing peers; standard scores averaged from 85 to 100, varying inversely with age of identification. Children whose parents were less involved (average to limited) had small lexicons with standard scores ranging from 60 to 80 depending on age of identification. Language scores were not related to mode of communication. Others have also found the quality of family participation in early intervention programs predicts later preschool language achievement (Calderon, 2000; Sarant, Holt, Dowell, Rickards, & Blarney, 2009).

“A series of studies examined vocabulary in pre-school for four large samples (n = 65 to 153) of recent cohorts of children with CIs (age range = 4.5 to 6.0) who attended (almost exclusively private) oral communication schools that fostered high parent participation (Geers, Moog, Biedenstein, Brenner, & Hayes, 2009; Geers, Nicholas, & Moog, 2007; Nicholas & Geers, 2008). On average, scores of children with CIs were in the low average range for hearing children (85 to 90 standard scores) on standardized expressive and receptive spoken vocabulary tests, with standard deviations slightly larger than the norm (e.g., 18–19 rather than 15). Approximately 50% of the children scores were within the average range for hearing norms, while 50% scored more than one standard deviation below the mean. Pre-implant hearing level, age of implantation, nonverbal IQ, and parental education were identified as independent contributors to vocabulary scores.”

Mary Pat Moeller et al. write in “Current state of knowledge: Language and literacy of children with hearing impairment,” Ear & Hearing 28 (2007):“Across these studies, divergent conclusions were reached regarding the status of vocabulary in school-aged students with HI. Some suggest that even the mildest degree of HI will delay vocabulary development (Davis, Elfenbein, Schum, & Bentler, 1986; Davis, Shepard, Stelmachowicz, & Gorga, 1981; Wake, Hughes, Poulakis, Collins, & Rikards, 2004). Others conclude that many school-aged children with mild-moderate HI perform comparably to age-matched peers with NH (Gilbertson & Kamhi, 1995; Plapinger & Sikora, 1995; Wolgemuth, Kamhi, & Lee, 1998). A longitudinal study conducted in Germany (Kiese-Himmel & Reeh, 2006) suggested that preschool children with mild to severe HI make larger gains in vocabulary than children with greater degrees of HI; 2 of 5 children with mild HI and 2 of 11 with moderate HI developed age-appropriate vocabulary skills.

“Gilbertson and Kamhi (1995) reported a bimodal distribution in the vocabulary scores of 20 school-aged students with mild-moderate HI. Specifically, high performers (n 10) scored in the low average range on the PPVT (Mean Standard Scores 88.3), whereas low performers (n 10) scored significantly below average (Mean SS 58.1). Because the low performers had difficulty on a variety of language/learning tasks, it was postulated that these children had Specific Language Impairments (SLI) in addition to hearing loss. However, it is unclear whether children in this study varied on background variables (e.g., age of interventions/amplification). In a later study (Moeller, 2000), intervention history and family involvement were found to contribute.

“Two recent studies identified delays in the development of early receptive and expressive vocabulary in young children with HI, some of whom were studied longitudinally from infancy (Mayne, Yoshinaga-Itano, & Sedey, 2000; Mayne, Yoshinaga-Itano, Sedey, & Carey, 2000). These studies used a maternal report measure (MacArthur-Bates Communicative Development Inventory, MCDI; Fenson, Dale, Reznick et al., 1993) to examine vocabulary size at several ages in large groups (168 and 113, respectively) compared with norms for infants with NH. In both studies, slightly more than 50% of the participants had HIs in the mild to severe range, and early identification was common. The results suggested that the average performers (those at the 50th percentile for HI) were significantly delayed in both receptive and expressive vocabulary compared with age-matched children with NH. Acceleration of the rate of expressive vocabulary learning was observed in the young children with HI after 25 mo of age (approximately 7 mo later than observed in toddlers with NH).”

54 The Douglas Baynton quotation (“The difficulty of learning spoken English . . . a soundproof glass cubicle”) comes from Forbidden Signs: American Culture and the Campaign against Sign Language (1996), page 5.

54 The observation that a mother must “impose herself upon his natural play-learning patterns, often against his will” comes from Eugene D. Mindel and McKay Vernon, They Grow in Silence: The Deaf Child and His Family (1971), page 58, as cited in Beryl Lieff Benderly, Dancing Without Music: Deafness in America (1990), page 51.

54 All quotations from Jackie Roth occurring in this chapter come from multiple interviews and communications with her since 1994.

54 Although it is often thought that IDEA mandates that children with disabilities be educated with their nondisabled peers, the law actually calls for the education of disabled children in such a way as to “ensure their access to the general curriculum to the maximum extent possible,” in the “least restrictive environment” possible. See Sultana Qaisar, “IDEA 1997—‘Inclusion is the law,’” paper presented at the Annual Convention of the Council for Exceptional Children, Kansas City, Missouri, April 18–21, 2001; and Perry A. Zirkel, “Does Brown v. Board of Education play a prominent role in special education law?,” Journal of Law & Education 34, no. 2 (April 2005). Zirkel writes: “There are several important differences between Brown and the IDEA legislation/litigation. First, Brown was a constitutional case, more specifically an equal protection decision. The modern special education cases are almost entirely statutory interpretation decisions, and the IDEA legislation is premised on the due process clause as well as the equal protection clause without squaring with either one. Second, the holding in Brown ultimately relied on race as a suspect classification, triggering what has now crystallized as strict scrutiny, whereas the subsequent special education cases have rejected such status for disability. Conversely, dicta in Brown stressed the importance of education, but subsequent Supreme Court decisions narrowed that importance to less than the level of a fundamental right, i.e., constitutional, right. Third, Brown represents an equality version, whereas the IDEA is more an equity version, of equal opportunity. FAPE means more than equal, whether separate or not, whereas Brown offered no such mandate. Fourth, and perhaps the most important difference, contrary to the purported landmark role of Brown in terms of LRE under the IDEA, is that Brown rejected separate but equal, with the remedy being desegregation. In contrast, LRE provides a continuum of placements that, although leaning toward integration, include separate, special classes and schools. Finally, Brown provides a group solution against discrimination, whereas the IDEA provides an individualized approach for what arguably is akin to reverse discrimination.

“Thus, Brown is of undeniable significance in education law, but its position in special education law-both litigation and legislation-is notably more indirect and limited than commonly conceived in the prevailing texts. The problem with the text authors may be that, as Ladson-Billings contends more generally, ‘[Brown] is reified in U.S. legal, political, and popular culture.’ Further research and reflection are warranted and welcome before reaching a definitive characterization of the nature and extent of its position within the specific context of special education law.”

54 Statistics on the decline of residential schools come from Ross E. Mitchell and Michael Karchmer, “Demographics of deaf education: More students in more places,” American Annals of the Deaf 151, no. 2 (2006).

54 Judith Heumann declared that separate education for deaf students was “immoral” in her article “Oberti decision is core of the ED’s inclusion position,” Special Educator, November 2, 1993, page 8, as cited in Jean B. Crockett and James M. Kaufmann, The Least Restrictive Environment: Its Origins and Interpretations in Special Education (1999), page 21.

55 Justice Rehnquist’s words occur in Board of Education v. Rowley, 458 U.S. 176 (1982); the full text of the decision can be found at http://www.law.cornell.edu/supremecourt/text/458/176.

55 Statistics on high school completion, college attendance, and earnings potential of deaf children and young adults come from Bonnie Poitras Tucker, “Deaf culture, cochlear implants, and elective disability,” Hastings Center Report 28, no. 4 (July 1, 1998).

55 Studies finding superior performance of deaf children of deaf parents compared to deaf children of hearing parents include E. Ross Stuckless and Jack W. Birch, “The influence of early manual communication on the linguistic development of deaf children,” American Annals of the Deaf 142, no. 3 (July 1997); Kenneth E. Brasel and Stephen P. Quigley, “Influence of certain language and communication environments in early childhood on the development of language in Deaf individuals,” Journal of Speech & Hearing Research 20, no. 1 (March 1977); and Kathryn P. Meadow, “Early manual communication in relation to the deaf child’s intellectual, social, and communicative functioning,” Journal of Deaf Studies & Deaf Education 10, no. 4 (July 2005).

55 Helen Keller’s observation is famous, but it may also be apocryphal. According to the tireless research librarians at Gallaudet University, this sentence appears to represent a distillation of sentiments expressed in two published sources. See Tom Harrington, “FAQ: Helen Keller Quotes,” Gallaudet University Library, 2000, http://www.gallaudet.edu/library/research_help/research_help/frequently_asked_questions/people/helen_keller_quotes.html: “Helen Keller supposedly said (or wrote) the following, or words very close to it: ‘Blindness cuts us off from things, but deafness cuts us off from people.’ We have never been able to trace this quotation to its original source, if indeed it was ever expressed in that form. However, Keller did express this same idea, in different words, at least twice. One occurrence appears in her Helen Keller in Scotland: A Personal Record Written by Herself, edited by James Kerr Love (London: Methuen & Co., 1933). On page 68, in a 1910 letter written to Kerr Love and reprinted in this book, she wrote:

“‘The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus—the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.’

“This excerpt from Keller’s letter is also reprinted in Grant, Brian, ed., The Quiet Ear: Deafness in Literature, an Anthology (London: Andre Deutsch, 1987), p. 36–37.

“For another occurrence, the article by Jean Christie, ‘Keller, Helen,’ in the Gallaudet Encyclopedia of Deaf People and Deafness (New York: McGraw-Hill, 1987, vol. 2, p. 125), quotes Keller:

“‘To a commonly posed question, Keller in her advancing years replied that she had concluded “after a lifetime in silence and darkness that to be deaf is a greater affliction than to be blind. . . . Hearing is the soul of knowledge and information of a high order. To be cut off from hearing is to be isolated indeed.”’

“Christie does not cite when or where this was originally said, but newspaper clippings in the Gallaudet University Archives show that it was said on June 21, 1955, in a pre-75th birthday interview at her home in Arcan Ridge, Connecticut.”

55 The quotation from Lennard Davis appears in My Sense of Silence: Memoirs of a Childhood with Deafness (2000), pages 6–8. It has been condensed. “To this day if I sign ‘milk,’ I feel more milky than if I say the word” occurs on page 6; the rest of the passage occurs two pages later. In its entirety: “Signing is like speech set to dance. There is a constant pas de deux between the fingers and the face. Since the features must express tone and volume, the face is continually mirroring the meaning of the fingers. There are combinations of small-motor skills, quick finger darts, and large sweeps of the arms and the body. Those who do not know sign language can only see the movements as distant and unnuanced. But those who understand signing can see the finest shade of meaning in a gesture. Like the pleasure some hearing people take in the graded distinctions between words like ‘dry,’ ‘arid,’ ‘parched,’ ‘desiccated,’ or ‘dehydrated,’ so the deaf can enjoy equivalent distinctions in the gestures of sign language.”

56 Figures on the incidence of deafness come from “Quick statistics” on the website of the National Institute on Deafness and Other Communication Disorders, http://www.nidcd.nih.gov/health/statistics/quick.htm.

56 The quotation from Carol Padden and Tom Humphries (“Culture provides a way for Deaf people to reimagine themselves . . .”) appears in Inside Deaf Culture (2005), page 161.

56 The Gallaudet protests were extensively covered by the mass media; one representative article is Lena Williams, “College for deaf is shut by protest over president,” New York Times, March 8, 1988. The Deaf President Now! story has since been told in depth in Jack Gannon, The Week the World Heard Gallaudet (1989); Katherine A. Jankowski, Deaf Empowerment: Emergence, Struggle, and Rhetoric (1997); and John B. Christiansen and Sharon N. Barnartt, Deaf President Now!: The 1988 Revolution at Gallaudet University (2003).

57 Gould’s resignation was described in David Firestone, “Chief executive to step down at deaf center,” New York Times, June 22, 1994.

60 This passage is based on my interview with Lewis Merkin in 1994 and subsequent personal communications. In addition to acting, Merkin is a staff interpreter with the NYC Department of Education, a member of the Board of Directors of the Registry of Interpreters for the Deaf, and a playwright, author of Language of One. He was quoted in Patrick Healy’s “Hearing man in deaf role stirs protests in New York,” New York Times, October 14, 2009.

60 All quotations by MJ Bienvenu come from my interviews with her in 1994 and subsequent communications.

60 For more information on the genes and epigenetic influences that contribute to deafness, see Lilach M. Friedman and Karen B. Avraham, “MicroRNAs and epigenetic regulation in the mammalian inner ear: Implications for deafness,” Mammalian Genome 20, nos. 9–10 (September–October 2009); and A. Eliot Shearer et al., “Deafness in the genomics era,” Hearing Research 282, nos. 1–2 (December 2011).

60 Information on the genetics of deafness can be found in Kathleen S. Arnos and Pandya Arti’s chapter, “Advances in the genetics of deafness,” in The Oxford Handbook of Deaf Studies, Language, and Education, edited by Marc Marschark and Patricia Elizabeth Spencer (2003); Mustafa Tekin, Kathleen S. Arnos, and Arti Pandya, “Advances in hereditary deafness,” Lancet 358 (September 29, 2001); and W. Virginia Norris et al., “Does universal newborn hearing screening identify all children with GJB2 (Connexin 26) deafness?: Penetrance of GJB2 deafness,” Ear & Hearing 27, no. 6 (December 2006). Also useful are two recent review articles on the practical applications of genetic research: Marina Di Domenico et al., “Towards gene therapy for deafness,” Journal of Cellular Physiology 226, no. 10 (October 2011); and Guy P. Richardson, Jacques Boutet de Monvel, and Christine Petit, “How the genetics of deafness illuminates auditory physiology,” Annual Review of Physiology 73 (March 2011).

61 Connexin 26 mutations on GJB2 were first reported in David P. Kelsell et al., “Connexin 26 mutations in hereditary non-syndromic sensorineural deafness,” Nature 357, no. 6628 (1997).

61 Syndromal forms of deafness include Usher syndrome, Pendred syndrome, and Waardenburg syndrome; information on all three can be found on the website of the National Institute on Deafness and Other Communication Disorders, http://www.nidcd.nih.gov/health/hearing/Pages/Default.aspx. The scientifically minded may also be interested in the following literature reviews: Denise Yan and Xue Z. Liu, “Genetics and pathological mechanisms of Usher syndrome,” Journal of Human Genetics 55, no. 6 (June 2010); Véronique Pingault et al., “Review and update of mutations causing Waardenburg syndrome,Human Mutation 31, no. 4 (April 2010); and Aigerim Bizhanova and Peter Kopp, “Genetics and phenomics of Pendred syndrome,” Molecular & Cellular Endocrinology 322, nos. 1–2 (June 2010).

61 For authoritative background reading on gap junctions and their role in deafness, see Regina Nickel and Andrew Forge’s entry in the Encyclopedia of Life Sciences (ELS), “Gap junctions and connexins: The molecular genetics of deafness” (2010); and H.-B. Zhao et al., “Gap junctions and cochlear homeostasis,” Journal of Membrane Biology 209, nos. 2–3 (May 2006).

61 Increases in deafness due to assortative mating are discussed in Kathleen S. Arnos et al., “A comparative analysis of the genetic epidemiology of deafness in the United States in two sets of pedigrees collected more than a century apart,” American Journal of Human Genetics 83, no. 2 (August 2008); and Walter J. Nance and Michael J. Kearsey, “Relevance of connexin deafness (DFNB1) to human evolution,” American Journal of Human Genetics 74, no. 6 (June 2004).

61 The Hittites are mentioned in the article by Arnos cited above. An additional, more detailed source is M. Miles, “Hittite deaf men in the 13th century B.C.” (2008). Descendants of the Hittites in modern Anatolia continue to possess the 35delG mutation; see Mustafa Tekin, “Genomic architecture of deafness in Turkey reflects its rich past,” International Journal of Modern Anthropology 2 (2009).

61 The quotation from Nancy Bloch about the discovery of the GJB2 gene appears in Denise Grady, “Gene identified as major cause of deafness in Ashkenazi Jews,” New York Times, November 19, 1998.

61 The quotation from Humphrey-Dirksen Bauman (“The question of what lives are worth living . . .”) comes from Open Your Eyes: Deaf Studies Talking (2008), page 14.

61 All quotations from Christina Palmer come from my interview with her in 2008 and subsequent personal communications. Palmer is an associate professor of psychiatry and biobehavioral sciences and an assistant professor-in-residence of human genetics at the UCLA School of Medicine, specializing in genetic counseling for deafness. With Patrick Boudreault, she is principal coinvestigator of the Deaf Genetics Project and coauthor of its final report, “Deaf adults’ reasons for genetic testing depend on cultural affiliation: Results from a prospective, longitudinal genetic counseling and testing study,” Journal of Deaf Studies & Deaf Education 15, no. 3 (Summer 2010).

62 The Whorf-Sapir hypothesis was originally proposed by Benjamin Lee Whorf, whose writings have been anthologized in Language, Thought, and Reality: Selected Writings of Benjamin Lee Whorf (1956). Chris Swoyer, “The linguistic relativity hypothesis” in The Stanford Encyclopedia of Philosophy (2003) provides a convenient summary.

62 I met and interviewed William Stokoe in 1994.

62 The MJ Bienvenu quotation (“We do not want or need to become hearing . . .”) comes from her article “Can Deaf people survive ‘deafness’?” in Deaf World: A Historical Reader and Primary Sourcebook, edited by Lois Bragg (2001), page 318.

62 The Barbara Kannapell quotation (“I believe ‘my language is me . . .’”) comes from her article “Personal awareness and advocacy in the Deaf community,” in Sign Language and the Deaf Community: Essays in Honor of William C. Stokoe, edited by Charlotte Baker and Robbin Battison (1980), pages 106–16.

62 The quotation from Carol Padden and Tom Humphries (“Deaf people’s bodies have been labeled . . .”) comes from Inside Deaf Culture (2005), page 6.

62 Edgar L. Lowell’s “shepherd/wolf” statement is quoted in Beryl Lieff Benderly, Dancing without Music: Deafness in America (1990), page 4.

62 Tom Bertling’s “baby talk” reference appears in A Child Sacrificed to the Deaf Culture (1994), page 84.

63 Beryl Lieff Benderly’s “holy war” comment occurs in Dancing without Music: Deafness in America (1990), page xi.

63 The exhibit History Through Deaf Eyes is described in Jean Lindquist Bergey and Jack R. Gannon, “Creating a national exhibition on deaf life,” Curator 41, no. 2 (June 1998); Douglas Baynton, Jack R. Gannon, and Jean Lindquist Bergey, Through Deaf Eyes: A Photographic History of an American Community (2001); and “Groundbreaking exhibition charts ‘History Through Deaf Eyes,’USA Today, February 2006.

The quotation from Kristen Harmon (now a professor of English at Gallaudet University) comes from her paper “I thought there would be more Helen Keller: History through Deaf eyes and narratives of representation,” in Signs and Voices: Deaf Culture, Identity, Language, and Arts, edited by Kristin A. Lindgren et al. (2008). It has been slightly condensed. In its entirety, it reads, “A parent of a cochlear-implanted deaf child wrote, ‘Parents need to be given accurate information on all the available options and then be free to make their own decisions. . . . Technology is a miracle and a gift. However, this is a two-sided issue that has created factions as divided and as militant as those in the abortion issue.’ The analogy made between the exhibition and the abortion debate suggests that what is at stake is a potentially aborted child, so to speak, an undeveloped child that the hearing parents try their best to bring to term, with the attendant implications that in doing so, the child will become ‘born again’ into normalcy, into the narratives of completion and bodily integrity. This parent also references the ownership issue when she says that parents should be ‘free’ to make their own decisions, as if the Deaf community were waiting to snatch her deaf child.”

For a discussion of questions raised about the “Through Deaf Eyes” project, which also included a film and companion book, see pages 74–82 of Brenda Jo Brueggemann’s Deaf Subjects: Between Identities and Places (2009).

63 An example of advocacy for the adoption of deaf children by deaf adults can be found in Barbara J. Wheeler, “This child is mine: Deaf parents and their adopted deaf children,” in Deaf World: A Historical Reader and Primary Sourcebook, edited by Lois Bragg (2001). In it, White states that she wrote her dissertation on adopted deaf children in part to create “empirical research to support my position that Deaf adults should be matched with Deaf kids needing adoptive placements.”

63 The quotation about the Moonies is from Edward Dolnick, “Deafness as culture,” Atlantic Monthly, September 1993.

63 Heppner is quoted in Edward Dolnick, “Deafness as culture,” Atlantic Monthly, September 1993.

63 The “four stages of deaf identity” were originally enumerated in Neil S. Glickman, “The development of culturally deaf identities,” in Culturally Affirmative Psychotherapy with Deaf Persons, edited by Neil S. Glickman and M. A. Harvey (1996), as cited in Irene Leigh’s chapter, “Who am I?: Deaf identity issues,” in Signs and Voices: Deaf Culture, Identity, Language, and Arts, edited by Kristin A. Lindgren et al. (2008), pages 25–26.

63 This passage is based on my interviews with Caro Wilson in 2007 and subsequent personal communications.

64 Mary Courtman-Davies is the author of Your Deaf Child’s Speech and Language (1979).

65 Mary Hare School organizational website: http://www.maryhare.org.uk.

66 On June 9, 2011, the Royal National Institute for Deaf People (RNID) changed its name to Action on Hearing Loss. Organizational website: http://www.actiononhearingloss.org.uk.

66 The phrase really not interested in the deaf was coined by Doug Alker, former head of RNID, and serves as the title of a book he published in 2000 about his acrimonious departure from that organization. For more on the controversy, see David Brindle’s article “Blood on the pages: Britain’s leading deaf charity riven by warring factions,” Guardian, July 4, 2000. Alker went on to found the Federation of Deaf People and led the British Deaf Association, which advocates for the British sign language community, until 2007.

67 National Association for the Deaf organizational website: http://www.nad.org.

67 Aaron Rudner is now a linguist and expert in Brazilian sign languages; Joyce Brubaker is currently the Interpreter Preparation Program (IPP) lab coordinator at Front Range Community College in Westminster, Colorado.

67 Alan Barwiolek passed away two years later; see Robert McG. Thomas Jr., “Alan Barwiolek, 43, is dead; an actor, despite deafness,” New York Times, April 20, 1996.

68 Ken Glickman’s website is at http://www.deafology.com. His video, DEAFology 101, can be purchased from Adco Hearing Products of Englewood, Colorado.

68 Bernard Bragg is a cofounder of the National Theatre of the Deaf. His website: http://bernardbragg.com.

68 A list of all contestants in the Miss Deaf America competition can be found at http://www.nad.org/events/biennial-conference/miss-deaf-america-contestants.

68 In September 2008, after thirteen years on the faculty of California State University, Northridge, Genie Gertz was appointed dean of the Center for Deaf Studies at Ohlone College in Fremont, California.

68 Kristen L. Johnson’s dissertation, “Ideology and Practice of Deaf Goodbyes,” earned her a PhD from the UCLA Department of Anthropology in 1994. She is currently affiliated with the English Department at Ohio State University.

68 The accident was reported in the article “Three injured in plane crash at Katama Airfield,” Martha’s Vineyard Times, June 30, 2005.

69 For more information on Bi-Bi education, see Carol LaSasso and Jana Lollis, “Survey of residential and day schools for deaf students in the United States that identify themselves as bilingual-bicultural programs,” Journal of Deaf Studies & Deaf Education 8, no. 1 (January 2003); and The Oxford Handbook of Deaf Studies, Language and Education, edited by Marc Marschark and Patricia Elizabeth Spencer (2003), page 45. A useful resource page for the layperson, “Bilingual bicultural deaf education,” can be found on the Rochester Institute of Technology website, http://library.rit.edu/guides/deaf-studies/education/bilingual-bicultural-deaf-education.html.

70 The quotation from Harlan Lane (“The dilemma is that deaf people want access . . .”) comes from his article “Do deaf people have a disability?,” Sign Language Studies 2, no. 4 (Summer 2002), page 375.

70 This passage is based on my interview with Bridget O’Hara in 2010 and subsequent personal communications. Her name and all others in this passage are pseudonyms. Some other identifying details have been changed.

70 Mondini malformation was originally described in 1791 by the Italian anatomist Carlo Mondini; an English translation appears in “Minor works of Carlo Mondini: The anatomical section of a boy born deaf,” American Journal of Otology 18, no. 3 (March 1997); see also Peter M. Som et al., “Mondini defect: A variant,” American Journal of Roentgenology 129, no. 6 (December 1977).

74 The story of the abuse of Catholic boarding-school students in Wisconsin was originally reported by Laurie Goodstein in “Vatican declined to defrock U.S. priest who abused boys,” New York Times, March 25, 2010; the quotation comes from Goodstein’s follow-up article, “For years, deaf boys tried to tell of priest’s abuse,” New York Times, March 27, 2010.

74 The show about sexual abuse in the Deaf community is Terrylene Sacchetti, In the Now; it was performed at Deaf Women United and subsequently on a thirty-six-city tour.

74 This passage is based on my interviews with Megan Williams, Michael Shamberg, and Jacob Shamberg in 2008 and subsequent interviews and personal communications. I note in the interests of full disclosure that I employed Jacob to assist me with research for this chapter.

74 Williams is producer and director of the film Tell Me Cuba.

75 California State University, Northridge, is one of only two undergraduate colleges in the country that offers a Deaf studies program.

75 John Tracy Clinic organizational website: http://www.jtc.org.

76 Kirchner was the consultant on deafness for the film Mr. Holland’s Opus. See Heather Young’s 1995 interview with Kirchner at http://www.handsandvoices.org/articles/misc/opus.html.

76 R. Daniel Foster described the TRIPOD program in “Deaf, hearing youngsters teach each other,” Los Angeles Times, May 16, 1991; see also Megan Williams’s article “Once upon a time: A brief history of TRIPOD,” at http://ourcommunityburbank.org/history.html.

78 Klonopin (clonazepam) is a benzodiazepine derivative with anticonvulsant, muscle relaxant, and anxiolytic properties.

79 This passage is based on my interview with Barb and Chris Montan in 2008 and subsequent personal communications.

80 Jeffrey Katzenberg is former CEO ad Michael Eisner is former COO of the Walt Disney Company.

81 For more background on Tripod Captioned Films and film captioning in general, see David J. Fox, “Captions give films a new sound;” Los Angeles Times, July 28, 1993; Glenn Rifkin, “Courting a deaf movie audience with caption devices,” New York Times, November 21, 1993; Gary Moskowitz, “Listening to those who can’t,” Burbank Leader, April 25, 2001; Lynn Smith, “Words can describe it,” Los Angeles Times, May 26, 2002; and Laura Sturza, “Making movies accessible for the hard of hearing,” Burbank Leader, September 21, 2002.

81 The Silent Knights baseball league is described in Dennis McCarthy’s article “Deaf kids get their turn at bat with camp,” Los Angeles Daily News, June 23, 2007.

80 Although the original TRIPOD program ceased operations in 2003, the TRIPOD program concept continues to be implemented at several sites within the Burbank Unified School District.

82 My original source on the debate was Edward Dolnick’s article “Deafness as culture,” Atlantic Monthly, September 1993. Although almost twenty years old now, it still accurately represents the polarization that exists in the d/Deaf community regarding the extent to which education of deaf students should focus on development of oral skills and support of those who seek to cultivate them. More recent writings representing the anti-oralist pole include Humphrey-Dirksen Bauman, “Audism: Exploring the metaphysics of oppression,” Journal of Deaf Studies & Deaf Education 9, no. 2 (Spring 2004); and Paddy Ladd, Understanding Deaf Culture: In Search of Deafhood (2003).

Articles critical of their perspective include two by Jane K. Fernandes and Shirley Shultz Myers: “Inclusive Deaf studies: Barriers and pathways,” Journal of Deaf Studies & Deaf Education 15, no. 1 (Winter 2010); and “Deaf studies: A critique of the predominant U.S. theoretical direction,” Journal of Deaf Studies & Deaf Education 15, no. 1 (Winter 2010). Fernandes is the former provost of Gallaudet University, whose appointment to the presidency of the institution was terminated in response to the 2006 protests; she is now provost and vice chancellor for academic affairs at the University of North Carolina, Asheville. Shirley Shultz Myers is director of the Honors Program and a professor of English at Gallaudet.

82 Total Communication is described in Hearing, Mother Father Deaf, edited by Michele Bishop and Sherry L. Hicks, (2009); and Larry Hawkins and Judy Brawner, “Educating children who are deaf or hard of hearing: Total Communication,” ERIC Digest 559 (1997). Signed Exact English is the subject of Diane Corcoran Nielsen et al., “The importance of morphemic awareness to reading achievement and the potential of signing morphemes to supporting reading development,” Journal of Deaf Studies & Deaf Education 16, no. 3 (Summer 2011). On Simultaneous Communication, see Nicholas Schiavetti et al., “The effects of Simultaneous Communication on production and perception of speech,” Journal of Deaf Studies & Deaf Education 9, no. 3 (June 2004); and Stephanie Tevenal and Miako Villanueva, “Are you getting the message? The effects of SimCom on the message received by deaf, hard of hearing, and hearing students,” Sign Language Studies 9, no. 3 (Spring 2009). For a comparison of ASL grammar and that of spoken languages, see Ronnie B. Wilbur, “What does the study of signed languages tell us about ‘language’?,” Sign Language & Linguistics 9, nos. 1–2 (2006).

82 Interview with Gary Mowl in 1994. Mowl is currently a language arts instructor at the Indiana School for the Deaf, and former head of the North Carolina School for the Deaf.

83 Prof. Bahan is coauthor with Harlan Lane and Robert Hoffmeister of A Journey into the Deaf-World (1996), and a contributor to Carol Neidle et al.’s The Syntax of American Sign Language (1999).

83 The anecdote about Benjamin Bahan is told in the 2007 film Through Deaf Eyes (2007), at 59.19–1.00.24.

83 For a useful resource in this area, see Tom Harrington and Sarah Hamrick, “FAQ: Sign languages of the world by country,” on the Gallaudet University website, http://library.gallaudet.edu/Library/Deaf_Research_Help/Frequently_Asked_Questions_%28FAQs%29/Sign_Language/Sign_Languages_of_the_World_by_Country.html.

83 Interview with Clark Denmark in 1994.

83 These sign languages are discussed in Humphrey-Dirksen Bauman, Open Your Eyes: Deaf Studies Talking (2008), page 16. For more on sign languages generally, see Diane Brentari, editor, Sign Languages (2010).

83 Bengkala is the focus of I Gede Marsaja, Desa Kolok: A Deaf Village and Its Sign Language in Bali, Indonesia (2008). The first report in the medical literature of the strain of deafness prevalent there is S. Winata et al., “Congenital non-syndromal autosomal recessive deafness in Bengkala, an isolated Balinese village,” Journal of Medical Genetics 32 (1995). For a general, accessible discussion of syndromic deafness within endogamous communities, see John Travis, “Genes of silence: Scientists track down a slew of mutated genes that cause deafness,” Science News, January 17, 1998. Additionally, for an opinionated overview of the academic research on the subject, see Annelies Kusters, “Deaf utopias?: Reviewing the sociocultural literature on the world’s ‘Martha’s Vineyard situations,’Journal of Deaf Studies & Deaf Education 15, no. 1 (January 2010).

84 These complex webs of relations are the subject of Hildred and Clifford Geertz’s oft-cited Kinship in Bali (1975).

87 This passage is based on my interviews with Apryl and Raj Chauhan in 2008 and thereafter, and personal communications.

86 In fact, few hospitals conducted hearing screenings on newborns back in 2000. The US Preventive Services Task Force recommendations issued in October 2001, “Newborn hearing screening: Recommendations and rationale,” concluded that the evidence at the time was “insufficient to recommend for or against routine screening of newborns for hearing loss during the postpartum hospitalization.”

86 For further information on transpositional hearing aids, see Susan Scollie et al., “Multichannel nonlinear frequency compression: A new technology for children with hearing loss,” in A Sound Foundation Through Early Amplification: Proceedings of the Fourth International Conference, edited by R. C. Seewald and J. M. Bamford (2008); and Patricia G. Stelmachowicz et al., “The importance of high-frequency audibility in the speech and language development of children with hearing loss,” Archives of Otolaryngology & Neck Surgery 130, no. 5 (May 2004).

89 Volta originally disclosed the findings of his 1790 experiment to the greater scientific community in a presentation to the Royal Society, “On the electricity excited by the mere contact of conducting substances of different kinds,” Philosophical Transactions of the Royal Society 90 (1800). From the original French: “Je n’ai plus qu’a’ dire un mot sur l’ouie. Ce sens, que j’avois inutilement cherché à exciter avec deux seules lames metalliques, quoique les plus actives entre tous les moteurs d’électricité, savoir, une d’argent, ou d’or, et l’autre de zinc, je suis enfin parvenu à l’affecter avec mon nouvel appareil, compose de 30 ou 40 couples de ces métaux. J’ai introduit, bien avant dans les deux oreilles, deux especes de sondes ou verges métalliques, avec les bouts arrondis; et je les ai fait communiquer immédiatement aux deux extremités de l’appareil. Au moment que le cercle a été insi complété, j’ai requ une secousse dans la tête, quelques moments après, (les communications continuant sans aucune interruption,) j’ai commencé a sentir un son, ou plutôt un bruit, dans les oreilles, que je ne saurois bien définir; c’etoit une espece de craquement à secousse, ou petillement, comme si quelque pâte ou matière tenace bouillonnoit. Ce bruit continua sans relache, et sans augmentation, tout le tems que le cercle fut complet, &c. La sensation désagréable, et que je craignis dangereuse, de la secousse dans le cerveau, a fait que je n’ai pas repété plusieurs fois cette expérience.”

90 Useful general references on the history of cochlear implants include Huw Cooper and Louise Craddock, Cochlear Implants: A Practical Guide (2006); the Deafness Research Foundation’s “Cochlear implant timeline” at http://www.drf.org/cochlear+timeline; and National Institute on Deafness and Other Communication Disorders, “Cochlear implants” (last updated March 2011), http://www.nidcd.nih.gov/health/hearing/coch.asp. Fan-Gang Zeng et al., “Cochlear implants: System design, integration and evaluation,” IEEE Review of Biomedical Engineering 1, no. 1 (January 2008), is a recent scholarly review of the state of the science. For discussions of the ethical controversy surrounding implantation, see John B. Christiansen and Irene W. Leigh, Cochlear Implants in Children: Ethics and Choices (2002); and Linda R. Komesaroff, Surgical Consent: Bioethics and Cochlear Implantation (2007).

90 Figures on the numbers of individuals who have received cochlear implants come from the above-cited National Institute on Deafness and Other Communication Disorders fact sheet on cochlear implants, at http://www.nidcd.nih.gov/health/hearing/coch.asp; and from Irene W. Leigh et al., “Correlates of psychosocial adjustment in deaf adolescents with and without cochlear implants: A preliminary investigation,” Journal of Deaf Studies & Deaf Education 14, no. 2 (Spring 2009).

90 Statistics on the proportion of severely hearing-impaired children under the age of three who receive implants come from Kate A. Belzner and Brenda C. Seal, “Children with cochlear implants: A review of demographics and communication outcomes,” American Annals of the Deaf 154, no. 3 (Summer 2009). From this article: “Severe to profound hearing loss is represented to occur in 0.1% to 0.2% of children (National Institute on Deafness and Other Communication Disorders [NIDCD], 2007). This means that in the United States there are potentially 72,000 to 145,000 deaf children who were or are candidates for implants. The FDA reported that 15,000 children had received cochlear implants by 2005 (American Academy of Audiology, n.d.); 25,000 were expected to be implanted by the end of the present decade, with the most rapid growth of the population receiving implants occurring among 12-month-olds (Gates & Miyamoto, 2003).”

90 Figures on racial and socioeconomic disparity in the distribution of implants come from John B. Christiansen and Irene W. Leigh, Cochlear Implants in Children: Ethics and Choices (2002), page 328.

90 Cochlear’s CEO made the remark about the as yet untapped market for implants in an interview with Bruce Einhorn, “Listen: The sound of hope,” BusinessWeek, November 14, 2005.

91 For impassioned criticism of cochlear implants, see Harlan Lane’s The Mask of Benevolence: Disabling the Deaf Community (1992). Although Lane’s book was written twenty years ago, and although technology has significantly progressed over the interim, complications are still fairly common, and the occasional revision continues to be necessary. Papers describing a medical community working assiduously to address the problem include Lorry G. Rubin and Blake Papsin, “Cochlear implants in children: Surgical site infections and prevention and treatment of acute otitis media and meningitis,” Pediatrics 126, no. 2 (August 2010), which indicates that postoperative surgical site infections occur in up to 12 percent of patients receiving cochlear implants; other complications include acute otitis media and bacterial meningitis. See also Kevin D. Brown et al., “Incidence and indications for revision cochlear implant surgery in adults and children,” Laryngoscope 119, no. 1 (January 2009): “The revision rate was 7.3% for children and 3.8% for adults.” Also, Daniel M. Zeitler, Cameron L. Budenz, and John Thomas Roland Jr., “Revision cochlear implantation,” Current Opinion in Otolaryngology & Head & Neck Surgery 17, no. 5 (October 2009): “A small but significant percentage (3–8%) of all cochlear implant procedures requires RCI surgery. The most common indication for RCI is hard failure (40–80%), but other common indications include soft failures, wound complications, infection, improper initial placement, and electrode extrusions.”

91 The R2-D2 comment is from personal communication.

91 The source of the anecdote about the woman who received a cochlear implant in early adulthood is Abram Katz, “The bionic ear: Cochlear implants: Miracle or an attack on ‘deaf culture’?,” New Haven Register, March 18, 2007.

91 HHS’s position on hearing screening for newborns can be found in the National Institute on Deafness and Other Communication Disorders fact sheet “Newborn hearing screening” (last updated February 14, 2011), at http://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=104.

91 From the National Association of the Deaf’s organizational history timeline (http://www.nad.org/nad-history):

“1999 . . . The NAD successfully co-drafts and pushes for passage of the Walsh Bill (Newborn and Infant Hearing Screening and Intervention Act of 1999).”

“2003 . . . Newborn and infant hearing screening hits 90%, as an outcome of NAD advocacy efforts.”

NAD’s current position statement on early intervention urges families to offer their children early exposure to American Sign Language in concert with assistive technologies and other strategies; see “Early intervention for infants and toddlers” at http://www.nad.org/issues/early-intervention.

91 The Australian study demonstrating improvement for children implanted before their first birthday is Shani J. Dettman et al., “Communication development in children who receive the cochlear implant under 12 months,” Ear & Hearing 28, no. 2 (April 2007). For more information on anesthesia risk to infants, see Rachael F. Holt and Mario A. Svirsky, “An exploratory look at pediatric cochlear implantation: Is earliest always best?,Ear & Hearing 29, no. 4 (August 2008).

91 The study finding less progress in development of spoken language by children implanted at the age of four than in those implanted at two is Ann E. Geers, “Speech, language, and reading skills after early cochlear implantation,” Archives of Otolaryngology—Head & Neck Surgery 130, no. 5 (May 2004).

91 The impact of cochlear implants upon brain plasticity is discussed in James B. Fallon et al., “Cochlear implants and brain plasticity,” Hearing Research 238, nos. 1–2 (April 2008); and Kevin M. J. Green et al., “Cortical plasticity in the first year after cochlear implantation,” Cochlear Implants International 9, no. 2 (2008).

92 Recent studies on adolescents implanted as children include Alexandra White et al., “Cochlear implants: The young people’s perspective,” Journal of Deaf Studies & Deaf Education 12, no. 3 (Summer 2007) (described twenty-nine UK teenagers, most of whom feel positive about their implants); Lisa S. Davidson et al., “Cochlear implant characteristics and speech perception skills of adolescents with long-term device use,” Otology & Neurology 31, no. 8 (October 2010) (109 subjects, concluded that adolescents using updated processors performed the best at soft levels, and that greater access to soft speech does not compromise listening in noise); Elena Arisi et al., “Cochlear implantation in adolescents with prelinguistic deafness,” Otolaryngology—Head & Neck Surgery 142, no. 6 (June 2010) (forty-five adolescent subjects, one-third of whom turned out to be “poor performers,” implant-wise); and Mirette B. Habib et al., “Speech production intelligibility of early implanted pediatric cochlear implant users,” International Journal of Pediatric Otorhinolaryngology 74, no. 8 (August 2010) (forty subjects, concluded that implantation in the ?rst two years of life produces highly intelligible speech before the age of six; this holds true for most, but not all, children implanted in their third year).

92 The study of open speech discrimination in children receiving cochlear implants was conducted by Susan B. Waltzman et al., “Open-set speech perception in congenitally deaf children using cochlear implants,” American Journal of Otology 18, no. 3 (1997), as cited by Bonnie Poitras Tucker in “Deaf culture, cochlear implants, and elective disability,” Hastings Center Report 28, no. 4 (July 1, 1998). A 2004 study had similar findings: Marie-Noëlle Calmels et al., “Speech perception and speech intelligibility in children after cochlear implantation,” International Journal of Pediatric Otorhinolaryngology 68, no. 3 (March 2004).

92 The survey of parents’ perceptions of their implanted children’s hearing and verbal comprehension was conducted by Gallaudet Research Institute, Regional and National Summary Report of Data from the 1999–2000 Annual Survey of Deaf and Hard of Hearing Children and Youth (2001).

92 The review concluding that implants offer only coarse and degraded versions of sound, and that children with the implant perceive fewer fine distinctions of spoken language than their peers can be found in The Oxford Handbook of Deaf Studies, Language and Education (2003), page 435.

92 In its brochures “The Reason to Choose AB” and “Hear Your Best,” Advanced Bionics prominently quotes from Michael Chorost, author of Rebuilt: My Journey Back to the Hearing World (2006): “The Bionic Ear appeared to offer more potential for being upgraded in the future as new and better coding strategies and software became available so that I could conceivably have more and better hearing.”

92 Interview with Robert Ruben, 1994.

92 Degrees of deafness and ways of classifying hearing loss are delineated in Richard J. H. Smith et al., “Deafness and hereditary hearing loss overview,” GeneReviews™ (1999–2012), at http://www.ncbi.nlm.nih.gov/books/NBK1434/.

93 Although NAD’s 1993 position paper condemning “invasive surgery on defenseless children” does not appear to have been published on the NAD website, the full text is archived on an Israeli website at http://www.zak.co.il/d/deaf-info/old/ci-opinions.

93 The modification of NAD’s position regarding cochlear implants was voted at the NAD’s Board of Directors meeting held October 6–7, 2000; see National Association of the Deaf, “NAD position statement on cochlear implants,” October 6, 2000. Additional resources on the debate within the Deaf community about cochlear implants: Marie Arana-Ward, “As technology advances, a bitter debate divides the deaf,” Washington Post, May 11, 1997; Felicity Barringer, “Pride in a soundless world: Deaf oppose a hearing aid,” New York Times, May 16, 1993; and Brad Byrom, “Deaf culture under siege,” H-Net Reviews, March 2003.

93 Christina Palmer made this statement directly to me. The “deaf ethnicity hypothesis” is the subject of Richard Clark Eckert, “Toward a theory of deaf ethnos: Deafnicity ? D/deaf (Hómaemon • Homóglosson • Homóthreskon),” Journal of Deaf Studies & Deaf Education 15, no. 4 (Fall 2010).

93 This passage is based on my interview with Dan, Nancy, and Emma Hessey in 2007 and subsequent communications.

93 The Hesseys succeeded in obtaining permission for Emma to come to the United States thanks to a “waiver of excludability,” which permits a person otherwise deemed ineligible to immigrate to the United States an adjustment of status under the US Immigration and Naturality Act. Waivers may be granted “for humanitarian purposes, to assure family unity, or otherwise when it is in the public interest,” except to individuals suspected of drug trafficking, terrorist activities, Nazi persecution and genocide, or those whose exclusion proceeds from security or foreign policy concerns. See Michael Aytes, “Waivers under Section 209(c) of the Immigration and Nationality Act (AFM Update 05-33),” (Washington, DC: U.S. Immigration & Naturalization Service, October 31, 2005).

97 Figures for the cost of cochlear implantation come from the Alexander Graham Bell Association’s FAQ “The cost of cochlear implants,” at http://nc.agbell.org/page.aspx?pid=723. Others estimate the total cost at $50,000 to $100,000; see the University of Miami School of Medicine’s “Costs associated with cochlear implants,” at http://cochlearimplants.med.miami.edu/implants/08_Costs%20Associated%20with%20Cochlear%20Implants.asp.

97 Figures on cost savings attributable to cochlear implantation come from two studies: André K. Cheng et al., “Cost-utility analysis of the cochlear implant in children,” Journal of the American Medical Association 274, no. 7 (August 16, 2000); and Jeffrey P. Harris et al., “An outcomes study of cochlear implants in deaf patients: Audiologic, economic, and quality-of-life changes,” Archives of Otolaryngology—Head & Neck Surgery 121, no. 4 (April 1995).

97 The quotation from the first mother (“If your child needs glasses . . .”) comes from the article “Implants help child emerge from silent world,” Associated Press/Casper Star-Tribune, April 24, 2006; the second (“If at 20 . . .”) comes from Anita Manning, “The changing deaf culture,” USA Today, May 2, 2000.

97 This passage is based on my interview with Bob Osbrink in 2008 and subsequent communications. The story of Rory’s childhood has been told in Jim Walters’s “Help for parents of the hearing-impaired child,” Los Angeles Times, October 14, 1986. Rory discusses his cochlear implants and the choice to turn them off in Arthur Allen’s “Sound and fury,” Salon, May 24, 2000; and Anita Manning’s “The changing deaf culture,” USA Today, May 2, 2000.

97 For more information on hearing loss in meningitis, see the Deafness Research Foundation UK fact sheet “Meningitis and hearing loss” (2005); the National Institute of Neurological Disorders and Stroke, “Meningitis and encephalitis fact sheet” (2004); and M. P. Richardson et al., “Hearing loss during bacterial meningitis,” Archives of Disease in Childhood 76 (1997).

98 The House Ear Institute and Clinic was cofounded by Howard House and his brother, William House.

99 The quotation from Rory comes from Arthur Allen, “Sound and fury,” Salon, May 24, 2000.

100 Teresa Blankmeyer Burke’s statement occurs in her essay “Bioethics and the deaf community,” in Signs and Voices: Deaf Culture, Identity, Language, and Arts, edited by Kristin A. Lindgren et al. (2008), pages 69–70.

100 Paula Garfield and Tomato Lichy describe their feelings about having a deaf daughter in Rebecca Atkinson, “‘I hoped our baby would be deaf,’ Guardian, March 21, 2006.

101 This passage is based on my interview with Felix, Rachel, and Sharon Feldman in 2008 and subsequent personal communications. All names in this passage are pseudonyms.

101 Jewish Deaf Community Center organizational website: http://www.jdcc.org.

103 Harlan Lane likens cochlear implantation to genital surgery on infants with intersex conditions in his paper “Ethnicity, ethics and the deaf-world,” Journal of Deaf Studies & Deaf Education 10, no. 3 (Summer 2005).

103 See Paddy Ladd, Understanding Deaf Culture: In Search of Deafhood (2003), page 415: “In the 1990s, genetic engineering has initiated the process of trying to identify ‘the deaf gene,’ thus bringing within theoretical reach what might be termed the ‘final solution’—that of eradicating Deaf people altogether.”

103 Harlan Lane likened attempts to eliminate deafness to attempts to eliminate ethnic groups in Paul Davies, “Deaf culture clash,” Wall Street Journal, April 25, 2005.

103 John B. Christiansen and Irene W. Leigh report that only half of the parents they surveyed had communicated with deaf adults prior to a decision to implant their children, and that some of those who did were met with hostility for even considering the procedure; see their paper “Children with cochlear implants: Changing parent and deaf community perspectives,” Archives of Otolaryngology—Head & Neck Surgery 130, no. 5 (May 2004): “When the parents were asked about whether they had had contact with the deaf community before the decision regarding implantation was made, according to both the GRI parent survey and our interviews approximately 50% of the parents reported that they had not previously met any deaf adults. The GRI survey found that 29% of the other parents had met deaf adults who opposed implantation of deaf children, 24% had met deaf adults who were supportive, and 16% had met deaf adults who were neutral. Another 6% had met with adults (or parents of deaf children) who had discontinued implant use. (Survey respondents were asked to select all sources of information. Thus, the total exceeds 100%.) Some of the parents with whom we discussed this issue reported positive experiences, while others who met deaf opponents of the procedure felt that their experiences were distinctly unhelpful. As one parent said, ‘When we spoke to the deaf community about the CI [cochlear implant] . . . certain members of the deaf community . . . their feelings were so angry and so hurtful. I mean, we were called child abusers . . . and butchers.’ In contrast, another parent reported, ‘It’s important for the voice of the deaf community to keep people cautioned or aware of, wait a minute, slow down this speeding train.’”

103 Gunilla Preisler discusses the Swedish practice of requiring parents of deaf children to learn about deafness from Deaf people in “The psychosocial development of deaf children with cochlear implants,” in Surgical Consent: Bioethics and Cochlear Implantation, edited by Linda Komesaroff (2007), pages 120–36.

104 Studies describing both the social gains and difficulties faced by young people with cochlear implants include Yael Bat-Chava, Daniela Martin, and Joseph G. Kosciw, “Longitudinal improvements in communication and socialization of deaf children with cochlear implants and hearing aids: Evidence from parental reports,” Journal of Child Psychology & Psychiatry 46, no. 12 (December 2005); Daniela Martin et al., “Peer relationships of deaf children with cochlear implants: Predictors of peer entry and peer interaction success,” Journal of Deaf Studies & Deaf Education 16, no. 1 (January 2011); and Renée Punch and Merv Hyde, “Social participation of children and adolescents with cochlear implants: A qualitative analysis of parent, teacher, and child interviews,” Journal of Deaf Studies & Deaf Education 16, no. 4 (2011).

From Bat-Chava et al: “Variability in functioning of children with implants may take different forms. Children perform differently depending on the situation in which they find themselves. Although children who use the implant to its maximum benefit may function similarly to hard of hearing children (Tait & Lutman, 1994) and hear much better than they did before receiving the implant, many children continue to experience difficulty communicating in adverse listening situations situations (e.g., with noise in the background or in groups; Bat-Chava & Deignan, 2001). Their functioning in such environments is therefore compromised and differs from their functioning in less adverse communication situations. In addition, there is variability in functioning between children. Although some children may perform very well with the implant, others may perceive only environmental sounds, and receive no benefit from the implant in communicating orally with hearing peers. A sole focus on averages masks the fact that some deaf children progress faster than hearing children and are able to achieve communication and socialization skills that are age-appropriate or are even advanced for their age, whereas other deaf children continue to lag behind their hearing peers. Many children in our study still function below age level in all domains, even after years of hearing aid or implant use. Other authors have also noted the great variability in communication and socialization skills of children with implants (Christiansen & Leigh, 2002; Ouellet & Cohen, 1999).

“The variability in functioning with an implant depends in part on age at implant, mode of communication, and cognitive factors (Pisoni et al., 1999; Sarant et al., 2001; Waltzman & Shapiro, 1999). In our study we find that for children with cochlear implants, duration of implant use interacted with level of hearing loss in affecting improvement. For children with more severe hearing loss, duration of implant use did not have an effect; all children with greater hearing loss benefited equally from the implant regardless of how long they had used the implant. For children with less severe hearing loss, on the other hand, having an implant for a shorter period was less beneficial than having an implant for a longer period. This suggests that children with greater hearing loss hit a plateau of improvement early on, and do not continue to improve, whereas children with lower levels of hearing loss continue to improve with longer duration of implant use. Other researchers found that earlier implantation tends to produce better results in terms of speech and hearing (Svirsky et al., 2000; Waltzman & Shapiro, 1999), pointing to age at implantation as another source of variability in children’s functioning, although in our study duration of implant use, rather than age at implant, was the important factor. Improvement in socialization seems to follow improvement in communication skills. Although communication and socialization skills improve at different rates, they clearly improve together. Better communication is related to better socialization. The improvement in socialization skills may be related to the stigma associated with ‘imperfect’ speech to which children are very sensitive (Spencer, Koester, & Meadow-Orlans, 1994). Deaf children whose speech is not clear may be rejected or ignored by peers, which then affects their ability to socialize. In fact, several studies have demonstrated that deaf children in a mainstream environment tend to be either rejected or (more commonly) ignored by hearing classmates (Cappelli, Daniels, Durieux-Smith, McGrath, & Neuss, 1995; Nunes & Pretzlik, 2001). No study has yet assessed peer acceptance or rejection of children with implants, however. If implants adequately improve deaf children’s ability to communicate, future studies should find that these children are rejected or ignored less (or not at all) compared to those with hearing aids.”

From Martin et al.: “This study investigated factors that affect the development of positive peer relationships among deaf children with cochlear implants. Ten 5- to 6-year-old deaf children with implants were observed under conditions varying peer context difficulty in a Peer Entry task. Results revealed better outcomes for deaf children interacting in one-on-one situations compared to interactions including two other hearing children and better performance among girls than boys. In addition, longer duration of implant use and higher self-esteem were associated with better performance on the Peer Task, which was in turn related to parental reports of children’s social functioning outside the experimental situation. These findings contribute to the growing literature describing the benefits of cochlear implantation in the areas of communication and socialization, while pointing to interventions that may enhance deaf children’s social competence.”

From Punch and Hyde: “Psychosocial factors, including socioemotional well-being, peer relationships, and social inclusion with hearing and deaf peers, are increasingly becoming a focus of research investigating children with cochlear implants. The study reported here extends the largely quantitative findings of previous research through a qualitative analysis of interviews with parents, teachers, and pediatric cochlear implant users themselves in three eastern states of Australia. We interviewed 24 parents, 15 teachers, and 11 children and adolescents. The findings displayed commonalities across the three groups of participants, indicating positive experiences around the children’s psychosocial development with their cochlear implants, but also ongoing difficulties communicating in groups of people and problems related to social skills. Some children had little contact with other deaf children (with or without cochlear implants) despite parents and teachers perceiving such contact beneficial. Children attending schools where there were other deaf children valued friendships with both deaf and hearing peers. Adolescence was a particularly difficult time for some as they struggled with feelings of self-consciousness about their deafness and external cochlear implant equipment and worries around friendships, dating, and their future place in the world. Recommendations for practice and further research are made.”

104 J. William Evans used the phrase culturally homeless in “Thoughts on the psychosocial implications of cochlear implantation in children,” in Cochlear Implants in Young Deaf Children, edited by E. Owens and D. Kessler (1989), page 312, as cited in Harlan Lane, “Cultural and infirmity models of deaf Americans,” Journal of the American Academy of Rehabilitative Audiology 23 (1990), page 22.

104 References to physical enhancement as “cyborg” occur in Brenda Jo Brueggemann, “Think-between: A deaf studies commonplace book,” in Open Your Eyes: Deaf Studies Talking, edited by Humphrey-Dirksen Bauman (2008), page 182: “Even the technology in hearing aids, FM systems, real-time captioning, video conferencing, instant messaging, the Internet, and e-mail matters in the cyborg mix here” (“here” being Gallaudet). See also James L. Cherney, “Deaf culture and the cochlear implant debate: Cyborg politics and the identity of people with disabilities,” Argumentation & Advocacy 36, no. 1 (Summer 1999).

104 The study in which two-thirds of parent-participants reported no resistance by their children to using implants was conducted at the Gallaudet Research Institute and reported in John B. Christiansen and Irene W. Leigh, Cochlear Implants in Children: Ethics and Choices (2002), page 168. A generally positive attitude toward implants is also reported in John B. Christiansen and Irene W. Leigh, “Children with cochlear implants: Changing parent and deaf community perspectives,” Archives of Otolaryngology & Head and Neck Surgery 130, no. 5 (May 2004); and Alexandra Wheeler et al., “Cochlear implants: The young people’s perspective,” Journal of Deaf Studies & Deaf Education 12, no. 3 (Summer 2007).

104 This passage is based on my interview with Barbara Matusky in 2008 and subsequent communications. Barbara is coordinator of the Parent Links Program and family-support provider for deaf outreach at the Family Focus Resource & Empowerment Center at California State University, Northridge.

105 Maryland School for the Deaf organizational website: http://www.msd.edu.

107 Kathryn Woodcock expressed her dissatisfaction with the disapproval of many in the Deaf community of the use of speech and hearing by other Deaf people in “Cochlear implants vs. Deaf culture?” in Deaf World: A Historical Reader and Primary Sourcebook, edited by Lois Bragg (2001), page 327.

107 The quotation from Irene Leigh comes from A Lens on Deaf Identities (2009), page 21.

107 Quotations from Josh Swiller occur on pages 14–15 and 100–101 of The Unheard: A Memoir of Deafness and Africa (2007). His personal website is at http://joshswiller.com. See also Jane Brody’s interview with Swiller, “Cochlear implant supports an author’s active life,” New York Times, February 26, 2008.

108 The first paper documenting the finding that sharks regenerate receptive hair cells is Jeffrey T. Corwin, “Postembryonic production and aging in inner ear hair cells in sharks,” Journal of Comparative Neurology 201, no. 4 (October 1981). Further research is reported by Corwin in “Postembryonic growth of the macula neglecta auditory detector in the ray, Raja clavata: Continual increases in hair cell number, neural convergence, and physiological sensitivity,” Journal of Comparative Neurology 217, no. 3 (July 1983); and in “Perpetual production of hair cells and maturational changes in hair cell ultrastructure accompany postembryonic growth in an amphibian ear,” Proceedings of the National Academy of Science 82, no. 11 (?June 1985).

108 Regeneration of cochlear hair cells in birds was first reported in Douglas A. Cotanche, “Regeneration of hair cell stereociliary bundles in the chick cochlea following severe acoustic trauma,” Hearing Research 30, nos. 2–3 (1987).

108 Early experiments with the use of retinoic acid to stimulate hair cell regeneration are described in M. W. Kelley et al., “The developing organ of Corti contains retinoic acid and forms supernumerary hair cells in response to exogenous retinoic acid in culture,” Development 119, no. 4 (December 1993). Retinoic acid and calf serum were administered to rats by Philippe P. Lefebvre et al., “Retinoic acid stimulates regeneration of mammalian auditory hair cells,” Science 260, no. 108 (April 30, 1993).

108 For an example of work by Staecker’s group, see Mark Praetorius et al., “Adenovector-mediated hair cell regeneration is affected by promoter type,” Acta Otolaryngologica 130, no. 2 (February 2010).

109 Further research on the cultivation of auditory hair cells and their introduction into living organisms is reported in Huawei Li et al., “Generation of hair cells by stepwise differentiation of embryonic stem cells,” Proceedings of the National Academy of Sciences 100, no. 23 (November 11, 2003); and Wei Chen et al., “Human fetal auditory stem cells can be expanded in vitro and differentiate into functional auditory neurons and hair cell-like cells,” Stem Cells 2, no. 5 (May 2009). For a general review on the state of research into hair cell regeneration, see John V. Brigande and Stefan Heller, “Quo vadis, hair cell regeneration?,” Nature Neuroscience 12, no. 6 (June 2009).

109 Exploring potential gene therapies to promote the growth of auditory hair cells: Samuel P. Gubbels et al., “Functional auditory hair cells produced in the mammalian cochlea by in utero gene transfer,” Nature 455, no. 7212 (August 27, 2008); and Kohei Kawamoto et al., “Math1 gene transfer generates new cochlear hair cells in mature guinea pigs in vivo,” Journal of Neuroscience 23, no. 11 (June 2003).

109 The ATOH1 gene figures large in Shinichi Someya et al., “Age-related hearing loss in C57BL/6J mice is mediated by Bak-dependent mitochondrial apoptosis,” Proceedings of the National Academy of Sciences 106, no. 46 (November 17, 2009).

109 The transduction channel is the focus of Math P. Cuajungco, Christian Grimm, and Stefan Heller, “TRP channels as candidates for hearing and balance abnormalities in vertebrates,” Biochimica et Biophysica Acta (BBA)—Molecular Basis of Disease 1772, no. 8 (August 2007).

109 Vaccine researcher Stanley A. Plotkin describes the history of rubella in the United States and attempts to staunch it in “Rubella eradication?,” Vaccine 19, nos. 25–26 (May 2001).

110 Marvin T. Miller is quoted in Monica Davey, “As town for deaf takes shape, debate on isolation re-emerges,” New York Times, March 21, 2005.

110 The comment that isolationism is no longer fashionable comes from Tom Willard, “N.Y. Times reports on proposed signing town,” Deafweekly, March 23, 2005.

111 Statistics on the number of ASL users come from the Gallaudet University Library; see Tom Harrington, “American Sign Language: Ranking and number of users” (2004), http://libguides.gallaudet.edu/content.php?pid=114804&sid=991835.

111 The 432 percent increase in ASL courses in a decade is documented in Elizabeth B. Welles, “Foreign language enrollments in United States institutions of higher education, Fall 2002,” Profession (2004).

111 For a representative work promoting teaching sign language to babies, see Joseph Garcia, Sign with Your Baby: How to Communicate with Infants Before They Can Speak (2002).

111 The term Deafhood was coined by the British Deaf activist Paddy Ladd, author of Understanding Deaf Culture: In Search of Deafhood (2003).

111 The quotation from Edna Edith Sayers decrying the trivialization of sign language and its appropriation by hearing persons occurs in Deaf World: A Historical Reader and Primary Sourcebook, edited by Lois Bragg (2001), page 116.

111 The passage by Harlan Lane (“The relation of the hearing parent to the young deaf child . . .”) occurs in The Mask of Benevolence (1992).

112 Jack Wheeler’s remarks appear in a Deafness Research Foundation fund-raising brochure, “Let’s Talk About Conquering Deafness” (2000).

112 Lawrence Hott and Diane Garey commented that “deafness is almost always one generation thick” in their film, Through Deaf Eyes (2007), which is available on DVD from Gallaudet University. The phrase culture of converts was first used by Frank Bechter in his essay “The deaf convert culture and its lessons for deaf theory,” in Open Your Eyes (2008), pages 60–79.

112 Rob Roth is currently program coordinator of the Advancing Deaf & Hard of Hearing in Computing program at the University of Washington; he also manages UW’s National Support Service Provider Pilot Project, developing a curriculum to train support service providers and deaf-blind persons.

113 From the introduction by Aina Pavolini to Amadou Hampâté Bâ, The Fortunes of Wangrin (1999), page ix: “After the independence of Mali in 1960, he formed part of his country’s delegation to the UNESCO General Conference held that year in Paris; it was on this occasion that he made his passionate plea for the preservation of Africa’s heritage with the famous statement, ‘En Afrique, quand un vieillard meurt, c’est un bibliothèque qui brûle’ (‘In Africa, when an old person dies, it’s a library burning down’).”

113 Estimates on the disappearance of languages come from Nicholas Evans, Dying Words: Endangered Languages and What They Have to Tell Us (2009); Evans’s words come from Nicholas Evans and Stephen C. Levinson, “The myth of language universals: Language diversity and its importance for cognitive science,” Behavioral & Brain Sciences 32 (2009), page 429.

113 For more commentary on the demise of Sign, see Lou Ann Walker, “Losing the language of silence,” New York, January 13, 2008.

114 My first book was The Irony Tower: Soviet Artists in a Time of Glasnost (1991).

114 Carol Padden’s question (“How can two conflicting impulses exist . . .”) occurs in Inside Deaf Culture (2005), page 163.

III: Dwarfs

115 My primary sources for much of this chapter are Betty M. Adelson, Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature (2005) and The Lives of Dwarfs: Their Journey from Public Curiosity toward Social Liberation (2005).

115 Proposals for towns for little people are discussed in John Van, “Little people veto a miniaturized village,” Chicago Tribune, June 16, 1989; and Sharon LaFraniere, “A miniature world magnifies dwarf life,” New York Times, March 3, 2010.

115 Victor A. McKusick was the founder of the discipline of medical genetics, and the leading investigator in the field of dwarfism among the Amish. For an accessible introduction to both Ellis–van Creveld syndrome and cartilage hair hypoplasia, see his review “Ellis–van Creveld syndrome and the Amish,” Nature Genetics 24 (March 2000). Shortly before his death in 2008, he published a professional memoir, “A 60-year tale of spots, maps, and genes,” Annual Review of Genomics & Human Genetics 7 (2006).

115 Because dwarfism is often not apparent at birth and does not always require medical intervention, calculations of incidence based on hospital records are inadequate, and even experts on dwarfism tend to offer figures rather tentatively. The renowned geneticist Dr. Victor McKusick told Betty Adelson in 1983 that he estimated that there were several million people in the world with dwarfism; see Betty M. Adelson, The Lives of Dwarfs (2005), pages 128–29. Joan Ablon comments that numbers range from twenty thousand to a hundred thousand, and quotes Charles Scott, a geneticist with a specialty in dwarfism, who estimated numbers at twenty thousand to twenty-five thousand; see Joan Ablon, Little People in America: The Social Dimension of Dwarfism (1984). Achondroplasia is said to occur in one in twenty thousand births, so if there is an American population of 318 million people, there should be about sixteen thousand Americans with achondroplasia, and Adelson told me that if you include all forms of skeletal dysplasia, the number approximately doubles, which would indeed give a number around thirty thousand, though she pointed out that this does not include hypopituitary disorders, Turner syndrome, juvenile arthritis, kidney disease, and various iatrogenic conditions, for which there are no precise figures; see Betty M. Adelson, Dwarfism (2005), pages 21–23. LPA has a membership of more than six thousand, some of whom are average-statured family members of dwarfs. With all of this in mind, it’s impossible to say what proportion of dwarfs belong to LPA, but it seems likely that it is upward of 10 percent.

116 Betty Adelson’s statement “The only permissible prejudice in PC America is against dwarfs” and subsequent statements from her, unless otherwise noted, are from correspondence and personal interviews conducted between 2003 and 2012.

116 The quotation from Mary D’Alton (“. . . you can fix that, right? . . .”) comes from a personal interview in 2010.

116 This passage is based on my interview with Mary Boggs in 2003.

118 William Hay recalled his visit with a general in Deformity: An Essay (1754). On page 16, Hay described himself as a hunchback, “scarce five Feet high”—quite possibly a person with diastrophic dysplasia. He was also a member of the House of Commons. With the phrase “a worm and no man,” Hay was quoting from the Bible, Psalms 22:6: “But I am a worm, and no man; a reproach of men, and despised of the people.” For a recent article about Hay, see “William Hay, M.P. for Seaford (1695–1755),” Parliamentary History 29, suppl. s1 (October 2010).

118 Betty Adelson refers to Woody Allen’s theory of the essential funniness of the word dwarf on page 6 of Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature (2005). Allen’s fondness for dwarf is apparent in The Complete Prose of Woody Allen (1991), which contains numerous examples of the word used in a humorous context.

119 116 Two centuries ago, William Wordsworth described the freak show at Bartholomew Fair in his epic The Prelude, Book 7 (1805), lines 706–21;

 

All moveables of wonder, from all parts,

Are here—Albinos, painted Indians, Dwarfs,

The Horse of knowledge, and the learned Pig,

The Stone-eater, the man that swallows fire,

Giants, Ventriloquists, the Invisible Girl,

The Bust that speaks and moves its goggling eyes,

The Wax-work, Clock-work, all the marvellous craft

Of modern Merlins, Wild Beasts, Puppet-shows,

All out-o’-the-way, far-fetched, perverted things,

All freaks of nature, all Promethean thoughts

Of man, his dulness, madness, and their feats

All jumbled up together, to compose

A Parliament of Monsters. Tents and Booths

Meanwhile, as if the whole were one vast mill,

Are vomiting, receiving on all sides,

Men, Women, three-years’ Children, Babes in arms.

For scholarly discussion of modern freak shows, see Michael M. Chemers, “Le freak, c’est chic: The twenty-first century freak show as theatre of transgression,” Modern Drama 46, no. 2 (Summer 2003); and Brigham A. Fordham, “Dangerous bodies: Freak shows, expression, and exploitation,” UCLA Entertainment Law Review 14, no. 2 (2007).

119 A post–World Cup dwarf-tossing event in New Zealand eventually led to a pink slip for British rugby player Mike Tindall after paparazzi spied him cavorting there; see Richard White, “Mike Tindall gropes blonde,” Sun, September 15, 2011; Robert Kitson, “Mike Tindall defended by England after incident at ‘dwarf-throwing’ bash,” Guardian, September 15, 2011; and Rebecca English, “After World Cup shame, a £25,000 fine and humiliation for Tindall (and Zara’s face says it all),” Daily Mail, January 12, 2012. In January 2012, Leopard’s Lounge & Broil in Windsor, Ontario, hosted a dwarf-tossing event; see Sonya Bell, “Dwarf-tossing: Controversial event at Windsor strip club draws 1,000 fans,” Toronto Star, January 29, 2012. At least one adult entertainer bills herself as “the world’s smallest porn star”; see Allen Stein, “Stoughton cop resigns after he left beat to see dwarf porn star,” Enterprise News, July 20, 2010.

119 Barbara Spiegel’s recollections come from my interview with her in 2003 and subsequent communications.

119 Statistics on the percentage of skeletal dysplasias attributable to de novo mutations and recessive genes come from Clair A. Francomano, “The genetic basis of dwarfism,” New England Journal of Medicine 332, no. 1 (January 5, 1995); and William A. Horton et al., “Achondroplasia,” Lancet 370 (July 14, 2007).

119 For a scholarly review article on pituitary dwarfism, see Kyriaki S. Alatzoglou and Mehul T. Dattani, “Genetic causes and treatment of isolated growth hormone deficiency: An update,” Nature Reviews Endocrinology 6, no. 10 (October 2010). Psychosocial dwarfism is discussed in Wayne H. Green, Magda Campbell, and Raphael David, “Psychosocial dwarfism: A critical review of the evidence,” Journal of the American Academy of Child Psychiatry 23, no. 1 (January 1984); and the newspaper article “The little boy who was neglected so badly by his mother that he became a dwarf,” Daily Mail, August 28, 2010.

119 The quotation from Marie-Hélène Huet comes from pages 6–7 of her book Monstrous Imagination (1993).

119 John Mulliken is quoted in Allison K. Jones, “Born different: Surgery can help children with craniofacial anomalies, but it can’t heal all of the pain,” Telegram & Gazette, May 23, 1995.

119 Betty Adelson describes the thoughtless manner in which some doctors have broken the news of a child’s achondroplasia to parents on page 160 of Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature (2005).

119 The mother’s recollection of doctors’ attitudes toward her child comes from a Yahoo! discussion group post by Brenda, June 12, 2001.

120 Joan Ablon quotes the mother and father whose doctor told them, “I regret to tell you that your child is a dwarf,” on page 17 of Living with Difference: Families with Dwarf Children (1988).

120 The Magic Foundation’s organizational website is at http://www.magicfoundation.org; the Human Growth Foundation’s website is at http://www.hgfound.org.

120 The quotation from Ginny Sargent (“No matter what we [as dwarfs] feel . . .”) comes from a Yahoo! discussion group post, September 4, 2001.

120 Matt Roloff’s reminiscence of his parents’ lowered expectations of him comes from a personal interview in 2003; he makes a similar statement on page 28 of Against Tall Odds: Being a David in a Goliath World (1999).

120 Little People, Big World show website: http://tlc.howstuffworks.com/tv/little-people-big-world.

120 This passage is based on my interview with Amy and Matt Roloff in 2003 and subsequent communications.

120 Descriptions of the Roloff children come from Virginia Heffernan, “The challenges of an oversize world,” New York Times, March 4, 2006.

121 This passage is based on my interview with Lisa Hedley in 2008 and subsequent personal communications. Her documentary on dwarfism, Dwarfs: Not a Fairy Tale, was first broadcast as part of the HBO American Undercover Sundays series on April 29, 2001. Though I have kept Lisa’s name because of the prominence of her film, her daughter’s name, Rose, is a pseudonym.

121 One of the brochures Lisa Hedley was given was John G. Rogers and Joan O. Weiss, “My Child Is a Dwarf?” (1977), published by LPA.

121 This quotation from Lisa Hedley (“With one word my husband and I became unwitting members of a community . . .”) comes from her article “A child of difference,” New York Times Magazine, October 12, 1997.

124 The quotation from Barbara Spiegel comes from my interview with her in 2003 and subsequent communications.

124 Alasdair G. W. Hunter reported on his evaluation of the comparative life satisfaction of dwarfs and their parents in “Some psychosocial aspects of nonlethal chondrodysplasias I: Assessment using a life-styles questionnaire,” American Journal of Medical Genetics 78, no. 1 (June 1998); the paper was the first of a three-part series in the same issue, with “Some psychosocial aspects of nonlethal chondrodysplasias, II: Depression and anxiety” and “Some psychosocial aspects of nonlethal chondrodysplasias, III: Self-esteem in children and adults.” For more studies on the emotional lives of dwarfs and their families, see Joan Ablon’s “Ambiguity and difference: Families with dwarf children,” Social Science & Medicine 30, no. 8 (April 1990); and James S. Brust et al., “Psychiatric aspects of dwarfism,” American Journal of Psychiatry 133, no. 2 (February 1976).

125 Study participants tended to rate their achondroplasia as “not serious” in Sarah E. Gollust et al., “Living with achondroplasia in an average-sized world: An assessment of quality of life,” American Journal of Medical Genetics 120A, no. 4 (August 2003).

125 LPA now explicitly concerns itself with disabling conditions often accompanying short stature and includes disability rights among the organization’s advocacy areas. See http://www.lpaonline.org/mc/page.do?sitePageId=84634#Disability: “Q: Is dwarfism considered a disability? A: Opinions vary within the dwarf community about whether or not this term applies to us. Certainly many short-statured people could be considered disabled as a result of conditions, mainly orthopedic, related to their type of dwarfism. In addition, access issues and problems exist even for healthy LPs. Consider, for example, the simple fact that most achondroplastic adults cannot reach an automated teller machine. LPA is working to make common activities easily reachable by people with dwarfism—including gas pumps, pay phones, and ATM’s. Dwarfism is a recognized condition under the Americans with Disabilities Act. Information on the ADA is also available directly from the US Department of Justice, which administers the law.”

125 Paul Steven Miller’s comment about LPA and disability occurs in chapter 6 of Dan Kennedy, Little People: Learning to See the World Through My Daughter’s Eyes (2003) at http://littlepeoplethebook.com/online-edition/chapter-06/.

125 Rosemarie Garland Thomson’s reference to “exclusionary discourse” occurs on page 6 of Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (1997).

126 The anonymous mother’s concerns about the implications and ramifications of physical accommodations come from a personal interview in 2003.

126 Linda Hunt differentiates between dwarfism and disease in her letter in response to Lisa Hedley, “A child of difference,” New York Times Magazine, November 2, 1997.

126 Joan Ablon describes the history of LPA in “Dwarfism and social identity: Self-help group participation,” Social Science & Medicine 15B (1981); and Betty Adelson in both Dwarfism (2005), pages 187–90, and The Lives of Dwarfs (2005), pages 319–21. An early account of LPA’s origins can be found in Martin S. Weinberg’s “The problems of midgets and dwarfs and organizational remedies: A study of the Little People of America,” Journal of Health & Social Behavior 9, no. 1 (March 1968). LPA’s founder, the showman Billy Barty, paired with the mayor of Reno, Nevada, who sought to stimulate “newsworthy visits” to the city, and succeeded in creating considerable buzz around his new organization, attracting coverage of its inaugural conference in April 1957 by the Reno Evening Gazette, Nevada State Journal, Las Vegas Daily Optic, and the United Press national newspaper syndicate. Convention delegates were met by news photographers, and photo opportunities were had with Reno’s mayor and the police chief. The owner of the Riverside Hotel offered free rooms and convention facilities, with meals at half price, to all delegates.

126 William Safire discusses words used to describe little people in “On language: Dwarf planet,” New York Times, September 10, 2006; see also Lynn Harris, “Who you calling a midget?,” Salon, July 16, 2009.

126 Barnum’s most famous performers were the proportionate dwarfs Charles Sherwood Stratton and his wife, Lavinia Bump Warren, known to audiences as “General and Mrs. Tom Thumb.” Stratton is author of the extravagantly titled autobiography Sketch of the Life: Personal Appearance, Character and Manners of Charles S. Stratton, the Man in Miniature, Known as General Tom Thumb, and His Wife, Lavinia Warren Stratton, Including the History of Their Courtship and Marriage, With Some Account of Remarkable Dwarfs, Giants, & Other Human Phenomena, of Ancient and Modern Times, Also, Songs Given at Their Public Levees (1874). For a brief contemporary account of Stratton’s career, see “Giants and dwarfs,” Strand Magazine 8 (?July–December 1894); for a modern analysis, see Michael M. Chemers, “Jumpin’ Tom Thumb: Charles Stratton onstage at the American Museum,” Nineteenth Century Theatre & Film 31 (2004). Lavinia Warren is the subject of Melanie Benjamin’s recent novel The Autobiography of Mrs. Tom Thumb (2011).

126 The offending article: David Segal, “Financial fraud is focus of attack by prosecutors,” New York Times, March 11, 2009. The public editor’s follow-up: Clark Hoyt, “Consistent, sensitive and weird,” New York Times, April 18, 2009.

126 Interview with Barbara Spiegel in 2003 and subsequent communications.

126 Betty Adelson’s advice about names is quoted by Lynn Harris in “Who you calling a midget?,” Salon, July 16, 2009.

126 This passage is based on my interview with Dan Kennedy, author of Little People: Learning to See the World Through My Daughter’s Eyes (2003), in 2003 and subsequent communications.

127 For more information on the association between hearing loss and cognitive skills among dwarfs, see G. Brinkmann et al., “Cognitive skills in achondroplasia,” American Journal of Medical Genetics 47, no. 5 (October 1993).

128 For authoritative and detailed information on dwarfing conditions, consult the National Organization for Rare Disorders (http://www.rarediseases.org), the National Library of Medicine’s Genetics Home Reference (http://ghr.nlm.nih.gov), and the Mayo Clinic (http://www.mayoclinic.com/health/dwarfism/DS01012). Useful general review articles include William A. Horton, “Bone and joint dysplasias,” in Primer on the Rheumatic Diseases (2008); David L. Rimoin et al., “The skeletal dysplasias,” Annals of the New York Academy of Sciences 1117 (December 2007); Uwe Kornak and Stefan Mundlos, “Genetic disorders of the skeleton: A developmental approach,” American Journal of Human Genetics 73, no. 3 (September 2003); and Frederic Shapiro, “Skeletal dysplasias,” in Pediatric Orthopedic Deformities: Basic Science, Diagnosis, and Treatment (2001).

For information on specific syndromes, see:

Achondroplasia: William A. Horton et al., “Achondroplasia,” Lancet 370 (July 14, 2007); and Pascal Richette, Thomas Bardin, and Chantal Stheneur, “Achondroplasia: From genotype to phenotype,” Joint Bone Spine 75, no. 2 (March 2008).

Pseudoachondroplasia: Alessandro Castriota-Scanderbeg and Bruno Dallapiccola, “Pseudoachondroplasia,” in Abnormal Skeletal Phenotypes: From Simple Signs to Complex Diagnoses (2005).

Spondyloepiphyseal dysplasia: George E. Tiller and Vickie L. Hannig, “X-Linked Spondyloepiphyseal Dysplasia Tarda,” in Gene Reviews (Internet) (1993–2011).

Diastrophic dysplasia: National Center for Biotechnology Information, “Diastrophic dysplasia,” in Genes and Disease (Internet) (1998–2011).

128 Victor McKusick’s estimates are quoted on page 128 of Betty M. Adelson, The Lives of Dwarfs (2005), citing Susan Lawrence, “Solving big problems for little people,” Journal of the American Medical Association 250, no. 3 (March 1983).

128 The genetic mechanism of achondroplasia was first described by Clair A. Francomano et al., “Localization of the achondroplasia gene to the distal 2.5 Mb of human chromosome 4p,” Human Molecular Genetics 3, no. 5 (May 1994); R. Shiang, et al., “Mutations in the transmembrane domain of FGFR3 cause the most common genetic form of dwarfism, achondroplasia,” Cell 78, no. 2 (July 29, 1994); and Gary A. Bellus, “Achondroplasia is defined by recurrent G380R mutations of FGFR3,” American Journal of Human Genetics 56 (1995), pages 368–73.

128 Achondroplasia prevalence rates come from Sue Thompson, Tom Shakespeare, and Michael J. Wright, “Medical and social aspects of the life course for adults with a skeletal dysplasia: A review of current knowledge,” Disability & Rehabilitation 30, no. 1 (January 2008).

129 Findings of increased mortality rates in children with achondroplasia come from Jacqueline T. Hecht et al., “Mortality in achondroplasia,” American Journal of Human Genetics 41, no. 3 (September 1987); and Julia Wynn et al., “Mortality in achondroplasia study: A 42-year follow-up,” American Journal of Medical Genetics 143A, no. 21 (November 2007).

129 Complications of hydrocephalus are discussed in Glenn L. Keiper Jr. et al., “Achondroplasia and cervicomedullary compression: Prospective evaluation and surgical treatment,” Pediatric Neurosurgery 31, no. 2 (August 1999).

129 Dwarfism caused by inadequate iodine intake/uptake, known as cretinism, is discussed in Zu-Pei Chen and Basil S. Hetzel, “Cretinism revisited,” Best Practice & Research Clinical Endocrinology & Metabolism 24, no. 1 (February 2010).

129 For more detailed scholarly resources on physical problems experienced by dwarfs, see Patricia G. Wheeler et al., “Short stature and functional impairment: A systematic review,” Archives of Pediatric & Adolescent Medicine 158, no. 3 (March 2004).

129 Dental problems in short-statured children are described in Heidrun Kjellberg et al., “Craniofacial morphology, dental occlusion, tooth eruption, and dental maturity in boys of short stature with or without growth hormone deficiency,” European Journal of Oral Sciences 108, no. 5 (October 2000).

130 Techniques for supporting proper posture for children with achondroplasia are described in Cheryl S. Reid’s LPA brochure, “Handling the newborn and young infant with achondroplasia” (1993). The AAP advises pediatricians to instruct parents appropriately in Tracy L. Trotter et al., “Health supervision for children with achondroplasia,” Pediatrics 116, no. 3 (2005). See also Richard M. Pauli, “The natural histories of bone dysplasias in adults: Vignettes, fables and just-so stories,” American Journal of Medical Genetics Part C: Seminars in Medical Genetics 145C, no. 3 (August 2007).

130 Physical activities that create pressure on the spine and increase the risk of developing osteoarthritis are contraindicated for people with bone disorders; see Tracy L. Trotter et al., “Health supervision for children with achondroplasia,” Pediatrics 116, no. 3 (2005).

130 See Richard Pauli et al., Understanding Developmental Differences in Young Children with Achondroplasia (1991).

130 LPA facilitated its members’ participation in a study by Jacqueline T. Hecht et al., “Obesity in achondroplasia,” American Journal of Medical Genetics 31, no. 3 (November 1988). The problem of monitoring weight gain in children with atypical growth is addressed in Julie Hoover-Fong et al., “Weight for age charts for children with achondroplasia,” American Journal of Medical Genetics Part A 143A, 19 (October 2007).

130 Useful scholarly articles on medical complications of dwarfism include Steven E. Kopits, “Orthopedic complications of dwarfism,” Clinical Orthopedics & Related Research 114 (January–February 1976); Dennis C. Stokes et al., “Respiratory complications of achondroplasia,” Journal of Pediatrics 102, no. 4 (April 1983); Ivor D. Berkowitz et al., “Dwarfs: Pathophysiology and anesthetic implications,” Anesthesiology 7, no. 4 (October 1990); Cheryl S. Reid et al., “Cervicomedullary compression in young patients with achondroplasia: Value of comprehensive neurologic and respiratory evaluation,” Journal of Pediatrics 110, no. 4 (1987); Rodney K. Beals and Greg Stanley, “Surgical correction of bowlegs in achondroplasia,” Journal of Pediatric Orthopedics 14, no. 4 (July 2005); and Elisabeth A. Sisk et al., “Obstructive sleep apnea in children with achondroplasia: Surgical and anesthetic considerations,” Otolaryngology—Head and Neck Surgery 120, no. 2 (February 1999).

131 This passage is based on my interview with Leslie Parks in 2003 and subsequent communications.

133 The cliché about cheery children is exemplified by Drash et al., who are regarded as “dated” and too narrowly focused by Thompson et al. See Philip W. Drash, Nancy E. Greenberg, and John Money, “Intelligence and personality in four syndromes of dwarfism,” in Human Growth, edited by D. B. Cheek (1968); and Sue Thompson, Tom Shakespeare, and Michael J. Wright, “Medical and social aspects of the life course for adults with a skeletal dysplasia: A review of current knowledge,” Disability & Rehabilitation 30, no. 1 (January 2008), pages 1–12.

133 Studies by Joan Ablon have concluded that dwarf children often develop bright personalities to compensate for their social challenges; see Living with Difference (1988), page 17; and “Personality and stereotype in osteogenesis imperfecta: Behavioral phenotype or response to life’s hard challenges?,” American Journal of Medical Genetics 122A (October 15, 2003).

134 For findings of a relatively contented childhood, see Alasdair G. W. Hunter’s three-part report, “Some psychosocial aspects of nonlethal chondrodysplasias,” American Journal of Medical Genetics 78, no. 1 (June 1998); James S. Brust et al., “Psychiatric aspects of dwarfism,” American Journal of Psychiatry 133, no. 2 (February 1976); Sarah E. Gollust et al., “Living with achondroplasia in an average-sized world: An assessment of quality of life,” American Journal of Medical Genetics 120A, no. 4 (August 2003); and M. Apajasalo et al., “Health-related quality of life of patients with genetic skeletal dysplasias,” European Journal of Pediatrics 157, no. 2 (February 1998).

134 Joan Ablon’s comment about overprotectiveness occurs on page 64 of Living with Difference (1988).

134 Richard Crandall’s words of warning about strollers occur on page 49 of his book Dwarfism: The Family and Professional Guide (1994).

134 For the Restricted Growth Association survey, see Tom Shakespeare, Michael Wright, and Sue Thompson, A Small Matter of Equality: Living with Restricted Growth (2007); conclusions about parental treatment and eventual emotional adjustment can be found on page 25.

134 A significant incidence of depression in young adults was found in Alasdair G. W. Hunter, “Some psychosocial aspects of nonlethal chondrodysplasias, II: Depression and anxiety,” American Journal of Medical Genetics 78, no. 1 (June 1998); see also Sue Thompson, Tom Shakespeare, and Michael J. Wright, “Medical and social aspects of the life course for adults with a skeletal dysplasia: A review of current knowledge,” Disability & Rehabilitation 30, no. 1 (January 2008). Hunter cautiously ventures that “adults who were born to unaffected parents may be at greater risk of depression than those who had an affected parent” (page 12).

135 Joan Ablon describes common emotional experiences associated with LPA membership in chapter 8 of Little People in America: The Social Dimension of Dwarfism (1984), “The encounter with LPA.”

135 The study finding that dwarfs have lower self-esteem, less education, and lower annual incomes, and are less likely to be married is Sarah E. Gollust et al., “Living with achondroplasia in an average-sized world: An assessment of quality of life,” American Journal of Medical Genetics 120A, no. 4 (August 2003).

135 The survey finding significant income disparity between people with dwarfism and their average-size family members is described in Betty Adelson, Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature (2005), page 259.

135 Michael Ain describes his job-hunting difficulties in Lisa Abelow Hedley’s documentary Dwarfs: Not a Fairy Tale (2001); see also Jonathan Bor’s article “Stature of surgeon is not about height: Dr. Michael Ain’s genes put a stop to his growth but not to his determination to excel in medicine,” Baltimore Sun, September 6, 1998. Ain is coauthor with Eric D. Shirley of “Achondroplasia: Manifestations and treatment,” Journal of the American Academy of Orthopedic Surgeons 17, no. 4 (April 2009).

135 The quotation from Ruth Ricker was recounted to me by Dan Kennedy in 2003.

135 All quotations from John Wolin come from his article “Dwarf like me,” Miami Herald, January 24, 1993.

135 The LP who described the experience of seeing other dwarfs for the first time was quoted in Ken Wolf, “Big world, little people,” Newsday, April 20, 1989.

136 This passage is based on my interview with Janet and Beverly Charles in 2003.

137 This passage is based on my interview with Leslye Sneider and Bruce Johnson in 2005 and subsequent communications. Leslye is now associated with Disability Rights New Mexico and edits the organization’s newsletter, The Advocate.

139 Basic sources on dwarf-tossing include Alice Domurat Dreger, “Lavish dwarf entertainment,” Hastings Center Bioethics Forum, March 25, 2008; and Deborah Schoeneman, “Little people, big biz: Hiring dwarfs for parties a growing trend,” New York Post, November 8, 2001.

139 The passage of New York’s “Dwarf Tossing and Dwarf Bowling Prohibition” (1990 NY Laws 2744) was reported in Elizabeth Kolbert, “On deadline day, Cuomo vetoes 2 bills opposed by Dinkins,” New York Times, July 24, 1990.

For more on the French ban and challenge, see the report of the United Nations Human Rights Committee, Views of the Human Rights Committee under article 5, paragraph 4, of the Optional Protocol to the International Covenant on Civil and Political Rights, Seventy-fifth session, Communication No. 854/1999, submitted by Manuel Wackenheim (July 15, 2002); and Emma Jane Kirby’s BBC report “Appeal for ‘dwarf-tossing’ thrown out,” British Broadcasting Corporation, September 27, 2002.

The Florida ban and challenge are described in “Dwarf tossing ban challenged,” United Press International, November 29, 2001; and “Federal judge throwing dwarf-tossing lawsuit out of court,” Florida Times-Union, February 26, 2002.

139 Law enforcement crackdowns against dwarf-tossers and bowlers are described in Steven Kreytak, “Tickets issued for dwarf-tossing,” Newsday, March 11, 2002; and Eddie D’Anna, “Staten Island nightspot cancels dwarf-bowling event for Saturday,” Staten Island Advance, February 27, 2008.

139 The Fidelity party and SEC penalty are described in Jason Nisse, “SEC probes dwarf-tossing party for Fidelity trader,” Independent, August 14, 2005; and Jenny Anderson, “Fidelity is fined $8 million over improper gifts,” New York Times, March 6, 2008.

139 For comparison of dwarf-tossing with contact sports, see Robert W. McGee, “If dwarf tossing is outlawed, only outlaws will toss dwarfs: Is dwarf tossing a victimless crime?,” American Journal of Jurisprudence 38 (1993). The real-life consequence of the idea that dwarf-tossing is acceptable behavior was most recently demonstrated when a thirty-seven-year-old man with achondroplasia sustained permanent spinal cord damage after being unwillingly tossed by a boor at a British pub, likely inspired by the Mike Tindall escapade; news of the incident inspired a number of dwarf celebrities to speak out in solidarity and concern. See the news reports “Dwarf left paralysed after being thrown by drunken Rugby fan,” Telegraph, January 12, 2012; “Golden Globes: Peter Dinklage cites Martin Henderson case,” Los Angeles Times, January 16, 2012; and Alexis Tereszcuk, “The little couple slam dwarf tossing,” Radar Online, March 20, 2012. See also Angela Van Etten, “Dwarf tossing and exploitation,” Huffington Post, October 19, 2011.

139 Wife-carrying, however, is a traditional Finnish sport; the man who carries his wife the farthest through an obstacle course wins her weight in beer. The annual world championships are held in Sonkajärvi, Finland; see http://www.eukonkanto.fi.

139 The discussion of Radio City and LPA and the quotations by dwarf actors are all from Lynn Harris, “Who you calling a midget?,” Salon, July 16, 2009. For more on the debate about dwarfs as entertainers, see Chris Lydgate, “Dwarf vs. dwarf: The Little People of America want respect—and they’re fighting each other to get it,” Willamette Week, June 30, 1999.

140 Herschel Walker’s and Joan Rivers’s offensive Celebrity Apprentice episode (season 8, episode 6) was broadcast on April 5, 2009. Jimmy Korpai’s complaint to the FCC about Celebrity Apprentice is described in Lynn Harris, “Who you calling a midget?,” Salon, July 16, 2009.

140 The first scientific studies on Homo floresiensis were Peter Brown et al., “A new small-bodied hominin from the Late Pleistocene of Flores, Indonesia,” Nature 431, no. 7012 (October 27, 2004); and Michael J. Morwood et al., “Archaeology and age of a new hominin from Flores in eastern Indonesia,” Nature 431, no. 7012 (October 27, 2004). New Scientist‘s first article on the subject referred to the find as Homo floresiensis, but subsequent articles adopted the term hobbits; compare Will Knight and Rachel Nowak, “Meet our new human relatives,” New Scientist, October 30, 2004, to “Tug of war over access to ‘hobbit’ bones,” New Scientist, December 11, 2004, and Adrian Barnett, “Hobbit brain ‘too small’ to be new species,” New Scientist, May 27, 2006. The term hobbits was also adopted by the scientists themselves; Morwood used it in the title of his full-length book on the discovery, A New Human: The Startling Discovery and Strange Story of the “Hobbits” of Flores, Indonesia (2007). For more on the current state of research re Homo floresiensis, see Leslie Aiello, “Five years of Homo floresiensis,” American Journal of Physical Anthropology 142, no. 2 (2010).

140 Alexander Chancellor’s commentary occurs in his article “Guide to age,” Guardian, November 6, 2004.

140 For information on the plight of Pygmies in modern Africa, see Minorities under Siege: Pygmies Today in Africa (2006); and African Commission on Human and Peoples’ Rights International Work Group for Indigenous Affairs, Report of the African Commission’s Working Group on Indigenous Populations/Communities: Research and information visit to the Republic of Gabon, 15–30 September 2007 (2010).

140 Responses to proposals to ban use of the term midget are described by Lynn Harris in “Who you calling a midget?,” Salon, July 16, 2009.

141 This passage is based on my many interviews with Betty Adelson between 2003 and 2012.

142 Quotations from mothers bereft at Kopits’s passing were posted as reader comments at Bertalan Mesko, “Dr. Steven E. Kopits, a modern miracle maker,” Science Roll, January 27, 2007, http://scienceroll.com/2007/01/27/dr-steven-e-kopits-a-modern-miracle-maker. Betty Adelson describes Kopits’s impact on the lives of his patients and their families on pages 57–66 of Dwarfism (2005). Patients’ feelings of gratitude and indebtedness to Kopits are abundantly reflected in the title of Brad Lemley’s article “Dr. Steven Kopits: The little people’s god,” Washington Post Magazine, December 9, 1984; see also Jean Marbella, “Doctor soothes little people,” Orlando Sun-Sentinel, February 3, 1985; and Gary Gately, “Maryland site offers hope for crippling condition,” New York Times, December 11, 1988.

142 For additional sources on dwarfs in history and varied cultures, see L.A. Malcolm, “Dwarfism amongst the Buang of Papua New Guinea,” Human Biology 45, no. 2 (1973); David W. Frayer,  “A case of chondrodystrophic dwarfism in the Italian late upper paleolithic,” American Journal of Physical Anthropology 75 (1988); Veronique Dasen, “Dwarfs in Athens,” Oxford Journal of Archaeology 9, no. 2 (July 1990), and her book, Dwarfs in Ancient Egypt and Greece (1993); “Richard III: A royal pituitary dwarf?,” The Lancet 338, no. 8765 (August 24, 1991); Yoram S. Carmeli, “From curiosity to prop: A note on the changing cultural significances of dwarves’ presentations in Britain,” Journal of Popular Culture 26, no. 1 (Summer 1992); Kurt Aterman, “From Horus the child to Hephaestus who limps: A romp through history,” American Journal of Medical Genetics 83A, no. 1 (March 1999); M. Miles, “Signing in the Seraglio: Mutes, dwarfs and jesters at the Ottoman Court 1500–1700,” Disability & Society 15, no. 1 (January 2000); James C. Haworth and Albert E. Chudley. “Dwarfs in art,” Clinical Genetics 59, no. 2 (February 2001); P. W. Dixon, “The Hawaiian Menehune in myth and paleontology,” Human Evolution 19, no. 4 (2004); Catherine Closet-Crane, “Dwarfs as seventeenth-century cynics at the court of Philip IV of Spain: A study of Velazquez’ portraits of palace dwarfs,” Atenea 35, no. 1 (June 2005); E. S. Aristova, “Pituitary dwarfism in an early Bronze Age individual from Tuva,” Archaeology, Ethnology & Anthropology of Eurasia 27, no. 3 (September 2006); Barbara M. Benedict, “Displaying difference: Curious Count Boruwlaski and the staging of class identity,” Eighteenth-Century Life 30, no. 3 (2006); Chahira Kozma, “Dwarfs in ancient Egypt,” American Journal of Medical Genetics 140A, no. 4 (February 15, 2006); and Chahira Kozma, “Skeletal dysplasia in ancient Egypt,” American Journal of Medical Genetics 146A, no. 23 (December 2008).

144 For more information on cultural interpretations of physical difference, see David M. Turner, “Introduction: Approaching anomalous bodies,” in Social Histories of Disability and Deformity: Bodies, Images and Experiences, edited by David M. Turner and Kevin Stagg (2006), pages 1–16.

144 Leviticus 21:16–24 (American Standard Version): “Then the Lord spoke to Moses, saying, ‘Speak to Aaron, saying, “No man of your offspring throughout their generations who has a defect shall approach to offer the food of his God. For no one who has a defect shall approach: a blind man, or a lame man, or he who has a disfigured face, or any deformed limb, or a man who has a broken foot or broken hand, or a hunchback or a dwarf, or one who has a defect in his eye or eczema or scabs or crushed testicles. No man among the descendants of Aaron the priest who has a defect is to come near to offer the Lord’s offerings by fire; since he has a defect, he shall not come near to offer the food of his God. He may eat the food of his God, both of the most holy and of the holy, only he shall not go in to the veil or come near the altar because he has a defect, so that he will not profane My sanctuaries. For I am the Lord who sanctifies them.”’ So Moses spoke to Aaron and to his sons and to all the sons of Israel.”

144 The 1932 horror film Freaks, directed by Tod Browning, featured real-life carnival sideshow performers, including people with microcephaly and missing limbs, conjoined twins, and dwarfs. Audiences were shocked by the film’s cast and violent conclusion, to the extent that Freaks was banned in the UK for thirty years. Since being revived in the early 1960s, Freaks has been selected for preservation in the United States National Film Registry; the film ranks fifteenth on Bravo TV’s list of the 100 Scariest Movie Moments.

144 Martha Undercoffer’s comments were made in a Yahoo! discussion group post on September 23, 2002.

145 The quotation from the dwarf who uses an MP3 player to block out unwanted comments occurs on page 29 of Tom Shakespeare, Michael Wright, and Sue Thompson, A Small Matter of Equality (2007).

145 This passage is based on my interview with Harry Wieder in 2003 and subsequent communications. His memorial service is described in Susan Dominus, “Remembering the little man who was a big voice for causes,” New York Times, May 1, 2010.

146 William Safire refers to “cruel folklore” and “Rumpelstiltskins” in “On language: Dwarf planet,” New York Times, September 10, 2006.

146 Joan Ablon’s comment about the magical status of dwarfs occurs on page 6 of Living with Difference (1988).

146 Anne Lamott’s remark occurs on page 25 of Tom Shakespeare, Michael Wright, and Sue Thompson, A Small Matter of Equality (2007).

146 This passage is based on my interview with Taylor, Carlton, and Tracey van Putten in 2008 and subsequent communications.

146 Scholarly articles on spondylometaphyseal dysplasia include G. W. Le Quesne and K. Kozlowski, “Spondylometaphyseal dysplasia,” British Journal of Radiology 46 (September 1973); and P. S.Thomas and N. C. Nevin, “Spondylometaphyseal Dysplasia,” American Journal of Roentgenology 128, no. 1 (January 1977).

147 Carlton David’s album, One, was released on the Whitestone Records label in 2004 and can be purchased via CD Baby.

148 The quotation from the LP about dwarfs’ romantic difficulties occurs on page 241 of Betty M. Adelson, Dwarfism (2005).

148 John Wolin’s remarks occur in his article “Dwarf like me,” Miami Herald, January 24, 1993.

148 The comment about the sexual incongruity between LPs and APs comes from an LPA chat room, April 15, 2006.

149 The quotation from Harry Wieder comes from my interview with him.

149 Betty Adelson describes attitudes toward mixed-height marriages on pages 57–58 and page 246 of Dwarfism (2005).

149 Increased rates of depression in LPs in mixed-height marriages were reported by Alasdair Hunter in “Some psychosocial aspects of nonlethal chondrodysplasias, II: Depression and anxiety,” American Journal of Medical Genetics 78, no. 1 (June 1998); and “Some psychosocial aspects of nonlethal chondrodysplasias, III: Self-esteem in children and adults,” American Journal of Medical Genetics 78 (June 1998).

149 On dwarfs’ marriage tendencies inside and outside LPA, I’ve relied on personal communications with Betty Adelson.

149 John Wolin’s remarks occur in his article “Dwarf like me,” Miami Herald, January 24, 1993.

149 For scholarly overviews of reproductive complications and anesthesia in achondroplastic dwarfs, see Judith E. Allanson and Judith G. Hall, “Obstetric and gynecologic problems in women with chondrodystrophies,” Obstetrics & Gynecology 67, no. 1 (January 1986); and James F. Mayhew et al., “Anaesthesia for the achondroplastic dwarf,” Canadian Anaesthetists’ Journal 33, no. 2 (March 1986).

149 The quotation from the dwarf mother about rudeness from strangers comes from Ellen Highland Fernandez, The Challenges Facing Dwarf Parents: Preparing for a New Baby (1989).

149 Betty Adelson’s remarks about dwarfs who bear children occur on page 249 of Dwarfism (2005).

150 This passage is based on my interviews and other communications with Cheryl, Clinton, and Clinton Brown Jr. between 2003 and 2010.

153 Clinton Brown III is now president and general manager of the NY Towers basketball team. He has been outspoken about the use of the word midget in the broadcast media. In 2009, he was among those who petitioned the FCC to ban the word midget from radio and TV broadcasting, protesting the use of the word on Apprentice, the Spike TV show Half Pint Brawlers, and Hulk Hogan’s Micro Championship Wrestling. See Scott Ross, “Little people angry with ‘Apprentice,’ call for ‘midget’ ban,” NBC New York, July 6, 2009; Issie Lapowski, “An end to the ‘M-word’: Little people want to ban the word ‘midget’ on TV,” New York Daily News, July 8, 2009; and David Moy, “Little people grapple with ‘M word’ on wrestling show,” AOL News, June 3, 2010.

155 See the previously cited scholarly sources on genetics of dwarfism: Clair A. Francomano, “The genetic basis of dwarfism,” New England Journal of Medicine 332, no. 1 (January 5, 1995); and William Horton, “Recent milestones in achondroplasia research,” American Journal of Medical Genetics 140A (2006).

155 For more information on lethal skeletal dysplasias, double heterozygosity, and prenatal diagnosis, see Anne E. Tretter et al., “Antenatal diagnosis of lethal skeletal dysplasias,” American Journal of Medical Genetics 75, no. 5 (December 1998); Maureen A. Flynn and Richard M. Pauli, “Double heterozygosity in bone growth disorders,” American Journal of Medical Genetics 121A, no. 3 (2003); and Peter Yeh, “Accuracy of prenatal diagnosis and prediction of lethality for fetal skeletal dysplasias,” Prenatal Diagnosis 31, no. 5 (May 2011).

155 The discovery of genes responsible for achondroplasia was first reported in Clair A. Francomano et al., “Localization of the achondroplasia gene to the distal 2.5 Mb of human chromosome 4p,” Human Molecular Genetics 3, no. 5 (May 1994); R. Shiang et al., “Mutations in the transmembrane domain of FGFR3 cause the most common genetic form of dwarfism, achondroplasia,” Cell 78, no. 2 (July 29, 1994); and Gary A. Bellus, “Achondroplasia is defined by recurrent G380R mutations of FGFR3,” American Journal of Human Genetics 56 (1995), pages 368–73. The discovery of the gene responsible for diastrophic dysplasia was first reported in Johanna Hästbacka et al., “The diastrophic dysplasia gene encodes a novel sulfate transporter: Positional cloning by fine-structure linkage disequilibrium mapping,” Cell 78, no. 6 (September 23, 1994); for pseudoachondroplasia, in Jacqueline T. Hecht et al., “Mutations in exon 17B of cartilage oligomeric matrix protein (COMP) cause pseudoachondroplasia,” Nature Genetics 10, no. 3 (July 1995); and for SED, in Brendan Lee et al., “Identification of the molecular defect in a family with spondyloepiphyseal dysplasia,” Science, New Series 244, no. 4907 (May 26, 1989).

For background on the genetics and incidence of dwarfism, see Clair A. Francomano, “The genetic basis of dwarfism,” New England Journal of Medicine 332, no. 1 (January 5, 1995); and R. J. M. Gardner’s “A new estimate of the achondroplasia mutation rate,” Clinical Genetics 11, no. 1 (April 2008).

155 John Wasmuth’s remarks about the proper use of prenatal diagnosis are quoted on pages 17–18 of Dan Kennedy’s Little People (2003).

156 The survey of attitudes toward abortion following prenatal diagnosis of achondroplasia was described in Jen Joynt and Vasugi Ganeshananthan, “Abortion decisions,” Atlantic Monthly, April 2003.

156 John Richardson refers to couples who wish to screen out average-size fetuses on page 9 of his memoir, In the Little World: A True Story of Dwarfs, Love, and Trouble (2001).

156 The quotation from Darshak Sanghavi comes from his article “Wanting babies like themselves, some parents choose genetic defects,” New York Times, December 5, 2006.

156 Betty Adelson and Joe Stramondo referred to “coercive eugenics” in an unpublished 2005 letter to the editor of the New York Times.

156 The anecdote about clinics’ refusal to implant dwarf embryos comes from Andy Geller, “Docs’ designer defect baby: Disabled by choice,” New York Post, December 22, 2006.

156 The quotation from Carol Gibson comes from the article “Babies with made-to-order defects?,” Associated Press, December 21, 2006.

156 This passage is based on my interview with Ginny Foos in 2003 and subsequent communications.

157 For discussion of potential economic disparity in the burden of disability resulting from the proliferation of prenatal diagnoses of dwarfing conditions, see Amy Harmon, “The problem with an almost-perfect genetic world,” New York Times, November 20, 2005.

157 Tom Shakespeare’s comments about impairment were made on the BBC radio program Belief, broadcast on December 30, 2005. Shakespeare has taken some flak for his evolving views about dwarfism and disability; see T. Koch, “Is Tom Shakespeare disabled?,” Journal of Medical Ethics 34 (2008).

157 The LPA statement was issued in 2005 as “Little People of America on pre-implantation genetic diagnosis” and can be found on the organization’s website, http://data.memberclicks.com/site/lpa/LPA_PGD_Position_Statement_2007.doc.

157 All quotations from Ericka Peasley come from my interview with her in 2009.

157 For more information on Morquio syndrome, see Benedict J. A. Lankester et al., “Morquio syndrome,” Current Orthopaedics 20, no. 2 (April 2006).

157 Gene therapy for chondrodysplasias is discussed in R. Tracy Ballock, “Chondrodysplasias,” Current Opinion in Orthopedics 11, no. 5 (October 2000), pages 347–52.

158 The quotation from Virginia Heffernan (“. . . a cherished inheritance . . .”) comes from her article “The challenges of an oversized world,” New York Times, March 4, 2006.

158 The following passage is based on my interviews with Monique Duras, Oleg Prigov, and Anatole Prigov in 2004 and 2008 and other communications. Their names are pseudonyms. Some other identifying details have been changed.

160 On geographic differences in preference for limb-lengthening surgery, see P. Bregani et al., “Emotional implications of limb lengthening in adolescents and young adults with achondroplasia,” Life-Span & Disability 1, no. 2 (July–December 1998).

161 The development of and controversy over limb-lengthening is discussed in David Lawrence Rimoin, “Limb lengthening: Past, present, and future,” Growth, Genetics & Hormones 7, no. 3 (1991); Eric D. Shirley and Michael C. Ain, “Achondroplasia: Manifestations and treatment,” Journal of the American Academy of Orthopedic Surgeons 17, no. 4 (April 2009); and Lisa Abelow Hedley, “The seduction of the surgical fix,” in Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality, edited by Erik Parens (2006). The technique is described in detail in S. Robert Rozbruch and Svetlana Ilizarov, Limb Lengthening and Reconstructive Surgery (2007).

161 Betty Adelson refers to the price of limb-lengthening surgery on page 95 of Dwarfism (2005).

162 The controversy within LPA about Dror Paley is described by Betty Adelson on pages 90–94 of Dwarfism (2005).

162 For Gillian Mueller’s comments on limb-lengthening, see her article “Extended limb-lengthening: Setting the record straight,” LPA Online, 2002.

162 The quotation from the LPA executive about the need to wait until a child is old enough to consider thoughtfully the ramifications of limb-lengthening surgery occurs on pages 170–71 of Dan Kennedy, Little People (2003).

162 The therapeutic potential of limb-lengthening is discussed in Hui-Wan Park et al., “Correction of lumbosacral hyperlordosis in achondroplasia,” Clinical Orthopaedics & Related Research 12, no. 414 (September 2003).

162 The quotation from Dan Kennedy about the benefits of longer arms occurs on page 186 of Little People (2003).

162 For more information on complications of limb-lengthening surgery, see Douglas Naudie et al., “Complications of limb-lengthening in children who have an underlying bone disorder,” Journal of Bone & Joint Surgery 80, no. 1 (January 1998); and Bernardo Vargas Barreto et al., “Complications of Ilizarov leg lengthening,” International Orthopaedics 31, no. 5 (October 2007).

163 The quotation from Arthur W. Frank about the imperative to “fix” comes from page 18 of his article “Emily’s scars: Surgical shapings, technoluxe, and bioethics,” Hastings Center Report 34, no. 2 (March–April 2004).

163 For more on Nicholas Andry and the history of orthopedic medicine, see Anne Borsay’s chapter, “Disciplining disabled bodies: The development of orthopaedic medicine in Britain, c. 1800–1939,” in Social Histories of Disability and Deformity: Bodies, Images and Experiences, edited by David M. Turner and Kevin Stagg (2006).

164 FDA approval of Humatrope for “unexplained shortness” was reported in Mark Kaufman, “FDA approves wider use of growth hormone,” Washington Post, July 26, 2003.

164 Growth hormone treatment for short stature is discussed in Carol Hart, “Who’s deficient, who’s just plain short?AAP News 13, no. 6 (June 1997); Natalie Angier, “Short men, short shrift: Are drugs the answer?,” New York Times, June 22, 2003; “Standing tall: experts debate the cosmetic use of growth hormones for children,” ABC News, June 19, 2003; and Susan Brink, “Is taller better?” and “When average fails to reach parents’ expectations,” Los Angeles Times, January 15, 2007.

164 Studies finding a positive correlation between height and income include Nicola Persico, Andrew Postlewaite, and Dan Silverman, “The effect of adolescent experience on labor market outcomes: The case of height,” Journal of Political Economy 112, no. 5 (2004); Timothy A. Judge and Daniel M. Cable, “The effect of physical height on workplace success and income,” Journal of Applied Psychology 89, no. 3 (2004); and Inas Rashad, “Height, health and income in the United States, 1984–2005,” W. J. Usery Workplace Research Group Paper Series, Working Paper 2008-3-1. For a summary of the research in layperson’s terms, see “Feet, dollars and inches: The intriguing relationship between height and income,” Economist, April 3, 2008.

164 The quotation from Vitruvius (“For the human body is so designed by nature . . .”) occurs on pages 72–73 of The Ten Books on Architecture (De Architectura) (1960).

164 The quotation from William Safire comes from his article “On language: Dwarf planet,” New York Times, September 10, 2006.

164 John Richardson’s comment on the abiding difference of dwarfs occurs on page 9 of In the Little World (2001).

164 This passage is based on my interview with Crissy and Kiki Trapani in 2008. For more information on Kniest syndrome (aka Kniest dysplasia), see Jürgen Spranger, Andreas Winterpacht, and Bernhard Zabel, “Kniest dysplasia: Dr. W. Kniest, his patient, the molecular defect,” American Journal of Medical Genetics 69, no. 1 (March 1997).

167 “Sewing Pins and Salamanders” is included in Writers Reading at Sweetwaters Anthology (2007).

IV: Down Syndrome

169 Emily Perl Kingsley’s inspirational essay “Welcome to Holland” was first featured in Dear Abby’s column “A fable for parents of a disabled child,” Chicago Tribune, November 5, 1989. For information on the concert band piece by Steven Barton, see http://www.c-alanpublications.com/Merchant2/merchant.mvc?Screen=PROD&Store_Code=CAPC&Product_Code=11770; for guitarist Nunzio Rosselli’s 2006 CD Welcome to Holland, see http://www.cduniverse.com/productinfo.asp?pid=7245475; for information on other adaptations, see http://www.gosprout.org/film/prog07/bio.htm. The essay is featured in Jack Canfield, Chicken Soup for the Soul: Children with Special Needs (2007), and can also be found all over the Internet.

170 The President’s Committee for People with Intellectual Disabilities (at http://www.acf.hhs.gov/programs/pcpid) is my source for statistics on the number of people and families affected by intellectual disabilities.

170 Down syndrome prevalence estimates come from Jan Marshall Friedman et al., “Racial disparities in median age at death of persons with Down syndrome: United States, 1968–1997,” Morbidity & Mortality Weekly Report 50, no. 22 (June 8, 2001); Stephanie L. Sherman et al., “Epidemiology of Down syndrome,” Mental Retardation & Developmental Disabilities Research Reviews 13, no. 3 (October 2007); and Mikyong Shin et al., “Prevalence of Down syndrome among children and adolescents in 10 regions,” Pediatrics 124, no. 6 (December 2009).

170 Statistics on the rate of miscarriage in Down syndrome pregnancies come from Joan K. Morris, Nicholas J. Wald, and Hilary C. Watt, “Fetal loss in Down syndrome pregnancies,” Prenatal Diagnosis 19, no. 2 (February 1999).

170 For general information on health problems associated with DS, see Don C. Van Dyke et al., Medical and Surgical Care for Children with Down Syndrome (1995); Paul T. Rogers and Mary Coleman, Medical Care in Down Syndrome (1992); and Claudine P. Torfs and Roberta E. Christianson, “Anomalies in Down syndrome individuals in a large population-based registry,” American Journal of Medical Genetics 77, no. 5 (June 1998).

For information on specific problems, see the following sources:

Heart problems: Julie R. Korenberg et al., “The genetic origins of cognition and heart disease in Down syndrome,” in Down Syndrome: Visions for the 21st Century, edited by William I. Cohen et al. (2002).

Alzheimer’s disease: Warren B. Zigman and Ira T. Lott, “Alzheimer’s disease in Down syndrome: Neurobiology and risk,” Mental Retardation & Developmental Disabilities Research Reviews 13, no. 3 (March 2007); and Sally Sara, “For people with Down syndrome, longer life has complications,” New York Times, June 1, 2008.

Vision problems: Robert A. Catalano, “Down syndrome,” Survey of Ophthalmology 34, no. 5 (March–April 1990); Robert A. Sargent, “Common eye conditions of children with Down syndrome,” in Medical and Surgical Care for Children with Down Syndrome, edited by Don C. Van Dyke et al. (1995); and Pamela L. Owens et al., “Vision and oral health needs of individuals with intellectual disability,” Mental Retardation & Developmental Disabilities Research Reviews 12, no. 1 (January–February 2006).

Leukemia: Julie A. Ross et al., “Epidemiology of leukemia in children with Down syndrome,” Pediatric Blood & Cancer 44, no. 1 (2005); and Amy M. Linabery et al., “Congenital abnormalities and acute leukemia among children with Down syndrome: A children’s oncology group study,” Cancer Epidemiology: Biomarkers & Prevention 17, no. 10 (October 2008).

Small brain: Joseph D. Pinter et al., “Neuroanatomy of Down’s syndrome: A high-resolution MRI study,” American Journal of Psychiatry 158, no. 10 (October 2001): 1659–65.

Testicular cancer: D. Satgé et al., “An excess of testicular germ cell tumors in Down’s syndrome: Three case reports and a review of the literature,” Cancer 80, no. 5 (September 1997).

170 For more information on tumor resistance in Down syndrome, see Henrik Hasle et al., “Risks of leukaemia and solid tumors in individuals with Down’s syndrome,” Lancet 355, no. 9119 (January 15, 2000); Quanhe Yang et al., “Mortality associated with Down’s syndrome in the USA from 1983 to 1997: A population-based study,” Lancet 359, no. 9311 (March 23, 2002); and Kwan-Hyuck Baek et al., “Down’s syndrome suppression of tumour growth and the role of the calcineurin inhibitor DSCR1,” Nature 459 (June 25, 2009).

The decreased risk of arteriosclerosis in Down syndrome is discussed in Arin K. Greene et al., “Risk of vascular anomalies with Down syndrome,” Pediatrics 121, no. 1 (January 2008), pages 135–40.

171 See Elizabeth H. Aylward et al., “Cerebellar volume in adults with Down syndrome,” Archives of Neurology 54, no. 2 (February 1997); and Joseph D. Pinter et al., “Neuroanatomy of Down’s syndrome: A high-resolution MRI study,” American Journal of Psychiatry 158, no. 10 (October 2001): 1659–65.

171 The risk of depression in people with Down syndrome is discussed in Dennis Eugene McGuire and Brian A. Chicoine, Mental Wellness in Adults with Down Syndrome (2006).

171 Studies demonstrating the existence of Down syndrome in primates include Sunny Luke et al., “Conservation of the Down syndrome critical region in humans and great apes,” Gene 161, no. 2 (1995); and Harold M. McClure et al., “Autosomal trisomy in a chimpanzee: Resemblance to Down’s syndrome,” Science 165, no. 3897 (September 5, 1969).

171 For more information on the history of prenatal testing, see Cynthia M. Powell, “The current state of prenatal genetic testing in the United States,” in Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch (2000).

171 The relative risks incurred in different methods of prenatal testing are discussed in Isabelle C. Bray and David E. Wright, “Estimating the spontaneous loss of Down syndrome fetuses between the times of chorionic villus sampling, amniocentesis and live birth,” Prenatal Diagnosis 18, no. 10 (October 1998).

171 For more information on the triple screen, see Tim Reynolds, “The triple test as a screening technique for Down syndrome: Reliability and relevance,” International Journal of Women’s Health 9, no. 2 (August 2010); Robert H. Ball et al., “First- and second-trimester evaluation of risk for Down syndrome,” Obstetrics & Gynecology 110, no. 1 (July 2007); and N. Neely Kazerouni et al., “Triple-marker prenatal screening program for chromosomal defects,” Obstetrics & Gynecology 114, no. 1 (July 2009).

171 New developments in prenatal screening are the subject of Roni Rabin, “Screen all pregnancies for Down syndrome, doctors say,” New York Times, January 9, 2007; and Deborah A. Driscoll and Susan J. Gross, “Screening for fetal aneuploidy and neural tube defects,” Genetic Medicine 11, no. 11 (November 2009).

171 This passage is based on my interviews with Emily Perl Kingsley in 2004 and 2007, and additional communications.

173 Jason Kingsley and Mitchell Levitz, Count Us In: Growing Up with Down Syndrome (1994), page 28.

177 New York State’s Residential Habilitation program is described at; other states have similar programs.

179 Jean Marc Gaspard Itard described his efforts to educate a feral child in the early nineteenth century in De l’Education d’un Homme Sauvage, ou Des Premiers Developpemens Physiques et Moraux du Jeune Sauvage de l’Aveyron (1801), published in English under the title The Wild Boy of Aveyron (1962).

179 Édouard Séguin is quoted on page 9 of the Handbook of Early Childhood Intervention, edited by Jack P. Shonkoff and Samuel J. Meisels (2000). For more information on Séguin, and works on the history of mental retardation in the United States, see Édouard Séguin, Idiocy and Its Treatment by the Physiological Method (1866); Mental Retardation in America: A Historical Reader, edited by Steven Noll and James W. Trent (2004); and James W. Trent Jr., Inventing the Feeble Mind: A History of Mental Retardation in the United States (1995).

179 Samuel Gridley Howe’s condemnation of disabled individuals was first published in his Report Made to the Legislature of Massachusetts, upon Idiocy (1848) and has been anthologized in Mental Retardation in America: A Historical Reader, edited by Steven Noll and James W. Trent (2004).

179 John Langdon H. Down’s first description of the syndrome now associated with his name was published as “Observations on an ethnic classification of idiots,” London Hospital, Clinical Letters & Reports 3 (1866), and has more recently been reprinted in Mental Retardation 33, no. 1 (February 1995).

179 Seminal documents in the history of the concept of “Mongolism” referenced in this section include John Langdon H. Down’s above-cited report; Francis Graham Crookshank, The Mongol in Our Midst: A Study of Man and His Three Faces (1924); L. S. Penrose, “On the interaction of heredity and environment in the study of human genetics (with special reference to Mongolian imbecility),” Journal of Genetics 25, no. 3 (April 1932); L. S. Penrose, “The blood grouping of Mongolian imbeciles,” Lancet 219, no. 5660 (February 20, 1932); and L. S. Penrose, “Maternal age, order of birth and developmental abnormalities,” British Journal of Psychiatry 85, no. 359 (New Series No. 323) (1939).

Contemporary historical analysis of the subject includes Daniel J. Kevles’s chapter, “‘Mongolian imbecility’: Race and its rejection in the understanding of a mental disease,” and David Wright’s chapter, “Mongols in our midst: John Langdon Down and the ethnic classification of idiocy, 1858–1924,” in Mental Retardation in America: A Historical Reader, edited by Steven Noll and James W. Trent (2004); and Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (1985).

179 The argument that Down’s view was progressive is proposed in David Wright, “Mongols in Our Midst: John Langdon Down and the Ethnic Classification of Idiocy, 1858–1924,” in Steven Noll and James W. Trent Jr., editors, Mental Retardation in America: A Historical Reader (2004), page 102.

179 The replacement of disabled workers in the job market by immigrants and historic classifications of intellectual impairment are both discussed in the introduction to Richard Noll, Mental Retardation in America (2004), pages 1–16.

180 Oliver Wendell Holmes declared that “three generations of imbeciles are enough” in Buck v. Bell, 274 US 200 (1927).

180 See Jérôme Lejeune et al., “Étude des chromosomes somatiques de neuf enfants mongoliens,” Comptes Rendus Hebdomadaires des Séances de l’Académie des Science 248, no. 11 (1959). Almost simultaneously, but independently, the gene was found by Patricia Jacobs in England; see Patricia Jacobs et al., “The somatic chromosomes in mongolism,” Lancet 1, no. 7075 (April 1959).

180 Erik Erikson’s institutionalization of his Down syndrome child is described in Lawrence J. Friedman, Identity’s Architect: A Biography of Erik H. Erikson (1999).

180 See Simon Olshansky, “Chronic sorrow: A response to having a mentally defective child,” Social Casework 43, no. 4 (1962).

180 The quotation from Albert Solnit and Mary Stark comes from their article “Mourning and the birth of a defective child,” Psychoanalytic Study of the Child 16 (1961).

181 Arthur Miller and Inge Morath’s institutionalization of their son with Down syndrome is described in Suzanna Andrews, “Arthur Miller’s missing act,” Vanity Fair, September 2007.

181 The statement that “a Down’s is not a person” was made by Joseph Fletcher in his article (with Bernard Bard) “The right to die,” Atlantic Monthly, April 1968.

181 See Ann Taylor Allen, “The kindergarten in Germany and the United States, 1840–1914: A comparative perspective,” History of Education 35, no. 2 (March 2006).

181 For further information on the history and philosophy of Montessori education, see Gerald Lee Gutek, The Montessori Method: The Origins of an Educational Innovation (2004).

181 The history of disability service and education organizations (including the Association for Retarded Citizens) and the growth of the disability rights movement are examined in Doris Zames Fleischer and Frieda Zames, The Disability Rights Movement: From Charity to Confrontation (2001).

181 The full text of the Social Security Act of 1935 can be found at http://www.ssa.gov/history/35act.html. Matching federal funds for the care of the disabled is authorized in Section 514 (a): “From the sums appropriated therefor and the allotments available under section 512, the Secretary of the Treasury shall pay to each State which has an approved plan for services for crippled children, for each quarter, beginning the quarter commencing July 1, 1935, an amount which shall be used exclusively for carrying out the State plan, equal to one-half of the total sum expended during such quarter for carrying out such plan.”

181 John Bowlby’s groundbreaking works include Maternal Care and Mental Health (1952), Child Care and the Growth of Love (1965), and the “Attachment trilogy”: Attachment (1969), Separation: Anxiety and Anger (1973), and Loss: Sadness and Depression (1980).

182 The establishment of the President’s Panel on Mental Retardation in 1961 is chronicled on pages 83–86 of Edward Shorter, The Kennedy Family and the Story of Mental Retardation (2000); see also Fred J. Krause’s official history, President’s Committee on Mental Retardation: A Historical Review 1966–1986 (1986), at http://www.acf.hhs.gov/programs/pcpid/docs/gm1966_1986.pdf.

182 See Eunice Kennedy Shriver, “Hope for retarded children,” Saturday Evening Post, September 22, 1962.

182 See Edward Zigler and Sally J. Styfco, The Hidden History of Head Start (2010).

182 The quoted passage comes from §504 of the Rehabilitation Act of 1973. For the full text of the law, see http://www.access-board.gov/enforcement/rehab-act-text/title5.htm; for more information in layperson’s language, see the website of the National Dissemination Center for Children with Disabilities, http://nichcy.org/laws/section504.

183 New York State’s Statewide Early Intervention Program is described in the booklet The Early Intervention Program: A Parent’s Guide, at http://www.health.ny.gov/publications/0532.pdf; the state’s comprehensive evaluation and intervention standards are promulgated in Demie Lyons et al., “Down syndrome assessment and intervention for young children (age 0–3): Clinical practice guideline: Report of the recommendations (2005).

183 For more information on early intervention, see Dante Cicchetti and Marjorie Beeghly, editors, Children with Down Syndrome: A Developmental Perspective (1990); Demie Lyons et al., “Down syndrome assessment and intervention for young children (age 0–3): Clinical practice guideline: Report of the recommendations (2005); Marci J. Hanson, “Twenty-five years after early intervention: A follow-up of children with Down syndrome and their families,” Infants & Young Children 16, no. 4 (November–December 2003); and Stefani Hines and Forrest Bennett, “Effectiveness of early intervention for children with Down syndrome,” Mental Retardation & Developmental Disabilities Research Reviews 2, no. 2 (1996).

184 This passage is based on my interview with Elaine Gregoli in 2005.

185 YAI/National Institute for People with Disabilities organizational website: http://www.yai.org.

186 For discussion of the history of reform in the education of disabled children, see Richard A. Villa and Jacqueline Thousand, “Inclusion: Welcoming, valuing, and supporting the diverse learning needs of all students in shared general education environments,” in Down Syndrome: Visions for the 21st Century, edited by William I. Cohen et al. (2002).

186 IDEA is also known as Public Law 94-142. For more information on this legislation, see US Congress, House Committee on Education and the Workforce, Subcommittee on Education Reform, Individuals with Disabilities Education Act (IDEA): Guide to Frequently Asked Questions (2005).

186 Michael Bérubé argues for the universal benefits of inclusion on pages 208–11 of Life as We Know It (1996).

187 This passage is based on my interview with Betsy Goodwin in 2004 and subsequent communications.

189 For further discussion of the “Baby Doe” legislation, see Kathryn Moss, “The ‘Baby Doe’ legislation: Its rise and fall,” Policy Studies Journal 15, no. 4 (June 1987); and H. Rutherford Turnbull, Doug Guess, and Ann P. Turnbull, “Vox populi and Baby Doe,” Mental Retardation 26, no. 3 (June 1988).

189 Peter Singer condones infanticide of profoundly disabled infants in his essay “Taking life: Humans,” on pages 175–217 of Practical Ethics (1993); see also his book Rethinking Life and Death: The Collapse of Our Traditional Ethics (1994). Disabled individuals respond to Singer’s pronouncements about the value of their lives in Not Dead Yet’s “NDY Fact Sheet Library: Pete Singer” (at http://www.notdeadyet.org/docs/singer.html; and Cal Montgomery, “A defense of genocide,” Ragged Edge Magazine, July–August 1999.

189 The mother whose doctor suggested that she was being “defensive” by expressing satisfaction with her relationship with her Down syndrome child was quoted in Bryony A. Beresford, “Resources and strategies: How parents cope with the care of a disabled child,” Journal of Child Psychology & Psychiatry 35, no. 1 (January 1994).

189 Marca Bristo’s response to Peter Singer’s philosophy occurs in Cal Montgomery, “A defense of genocide,” Ragged Edge Magazine, July–August 1999.

189 The quotation from Adrienne Asch and Erik Parens comes from their essay “The disability rights critique of prenatal genetic testing: Reflections and recommendations,” in Prenatal Testing and Disability Rights (2000); the quotation that follows comes from Adrienne Asch, “Disability equality and prenatal testing: Contradictory or compatible?,” Florida State University Law Review 30, no. 2 (Winter 2003).

189 Leon Kass sets forth his objections to prenatal diagnosis in his essay “Implications of prenatal diagnosis for the human right to life,” in Intervention and Reflection: Basic Issues in Medical Ethics, edited by Ronald Munson (2000).

190 The quotation from Janice McLaughlin (“Mourning the choice a woman is compelled to make . . .”) comes from her paper “Screening networks: Shared agendas in feminist and disability movement challenges to antenatal screening and abortion,” Disability & Society 18, no. 3 (2003).

190 My source for estimates of the numbers of abortions following prenatal diagnosis of Down syndrome, and the numbers of prenatally diagnosed DS babies born annually, is Brian Skotko, “Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers,” American Journal of Obstetrics & Gynecology 192, no. 3 (March 2005).

190 The quotation from Tierney Temple Fairchild’s doctor (“Almost everything you want to happen will happen”) occurs on page 81 of Mitchell Zuckoff, Choosing Naia: A Family’s Journey (2002).

190 The quotation from Tierney Temple Fairchild comes from her article “The choice to be pro-life,” Washington Post, November 1, 2008; see also her speech “Rising to the occasion: Reflections on choosing Naia,” Leadership Perspectives in Developmental Disability 3, no. 1 (Spring 2003).

190 Memoirs of parents of children with Down syndrome include Willard Abraham, Barbara: A Prologue (1958); Martha Nibley Beck, Expecting Adam (1999); Michael Bérubé, Life as We Know It (1996); Martha Moraghan Jablow, Cara (1982); Danny Mardell, Danny’s Challenge (2005); Vicki Noble, Down Is Up for Aaron Eagle (1993); Greg Palmer, Adventures in the Mainstream (2005); Kathryn Lynard Soper, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (2007); Mitchell Zuckoff, Choosing Naia (2002); and Cynthia S. Kidder and Brian Skotko, Common Threads: Celebrating Life with Down Syndrome (2001).

191 This passage is based on my interview with Deirdre Featherstone and Wilson Madden in 2007 and subsequent communications.

194 David Patterson discusses the genetic phenomena that give rise to such a wide variety of manifestations in Down syndrome in his chapter, “Sequencing of chromosome 21/The Human Genome Project,” in Down Syndrome: Visions for the 21st Century, edited by William I. Cohen et al. (2003).

194 One study finding that people with Down syndrome are generally agreeable is Brigid M. Cahill and Laraine Masters Glidden, “Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities,” American Journal on Mental Retardation 101, no. 2 (September 1996).

194 For more on psychopathology in DS, see Ann Gath and Dianne Gumley, “Retarded children and their siblings,” Journal of Child Psychology & Psychiatry 28, no. 5 (September 1987); Beverly A. Myers and Siegfried M. Pueschel, “Psychiatric disorders in persons with Down syndrome,” Journal of Nervous & Mental Disease 179 (1991); Dennis Eugene McGuire and Brian A. Chicoine, Mental Wellness in Adults with Down Syndrome (2006); and Jean A. Rondal et al., editors, The Adult with Down Syndrome: A New Challenge for Society (2004).

195 The quoted study, finding that people with Down syndrome experience considerable emotional difficulty, is Elisabeth M. Dykens, “Psychopathology in children with intellectual disability,” Journal of Child Psychology & Psychiatry 41, no. 4 (May 2000); see also Elisabeth M. Dykens, “Psychiatric and behavioral disorders in persons with Down syndrome,” Mental Retardation & Developmental Disabilities Research Review 13, no. 3 (October 2007).

195 The sexual abuse of disabled individuals occurs not only at the hands of caretakers and nondisabled predators but also at the hands of other disabled individuals, especially in group settings; see Deborah Tharinger, Connie Burrows Horton, and Susan Millea, “Sexual abuse and exploitation of children and adults with mental retardation and other handicaps,” Child Abuse & Neglect 14, no. 3 (1990); Eileen M. Furey and Jill J. Niesen, “Sexual abuse of adults with mental retardation by other consumers,” Sexuality & Disability 12, no. 4 (1994); and Eileen M. Furey, James M. Granfield, and Orv C. Karan, “Sexual abuse and neglect of adults with mental retardation: A comparison of victim characteristics,” Behavioral Interventions 9, no. 2 (April 1994).

195 Behavioral problems and parenting stress are discussed in R. Stores et al., “Daytime behaviour problems and maternal stress in children with Down’s syndrome, their siblings, and non-intellectually disabled and other intellectually disabled peers,” Journal of Intellectual Disability Research 42, no. 3 (June 1998); and Richard P. Hastings and Tony Brown, “Functional assessment and challenging behaviors: Some future directions,” Journal of the Association for Persons with Severe Handicaps 25, no. 4 (Winter 2000).

195 For a recent review of progress in gene therapy for Down syndrome, see Cristina Fillat and Xavier Altafaj, “Gene therapy for Down syndrome,” Progress in Brain Research 197 (2012).

195 The main promoter of multivitamin regimens—aka orthomolecular treatment—and the target of most of the referenced criticism was Henry Turkel (1903–92), whose treatment incorporated vitamins, antihistamines, and diuretics; see Henry Turkel, “Medical amelioration of Down’s syndrome incorporating the orthomolecular approach,” Journal of Orthomolecular Psychiatry 4, no. 2 (2nd Quarter 1975). Papers critical of supplementation include Len Leshin, “Nutritional supplements for Down syndrome: A highly questionable approach,” Quackwatch, October 18, 1998, http://www.quackwatch.org/01QuackeryRelatedTopics/down.html; Cornelius Ani, Sally Grantham-McGregor, and David Muller, “Nutritional supplementation in Down syndrome: Theoretical considerations and current status,” Developmental Medicine & Child Neurology 42, no. 3 (March 2000); Nancy J. Lobaugh et al., “Piracetam therapy does not enhance cognitive functioning in children with Down syndrome,” Archives of Pediatric & Adolescent Medicine 155, no. 4 (April 2001); W. Carl Cooley, “Nonconventional therapies for Down syndrome: A review and framework for decision making,” in Down Syndrome: Visions for the 21st Century, edited by William I. Cohen et al. (2002); and Nancy J. Roizen, “Complementary and alternative therapies for Down syndrome,” Mental Retardation & Developmental Disabilities Research Reviews 11, no. 2 (April 2005). For more information on growth hormone, see Salvador Castells and Krystyna E. Wiesniewski, editors, Growth Hormone Treatment in Down’s Syndrome (1993).

195 See Rolf R. Olbrisch, “Plastic and aesthetic surgery on children with Down’s syndrome,” Aesthetic Plastic Surgery 9, no. 4 (December 1985); Siegfried M. Pueschel et al., “Parents’ and physicians’ perceptions of facial plastic surgery in children with Down syndrome,” Journal of Mental Deficiency Research 30, no. 1 (March 1986); Siegfried M. Pueschel, “Facial plastic surgery for children with Down syndrome,” Developmental Medicine & Child Neurology 30, no. 4 (August 1988); and R. B. Jones, “Parental consent to cosmetic facial surgery in Down’s syndrome,” Journal of Medical Ethics 26, no. 2 (April 2000).

195 The National Down Syndrome Society sets forth the organization’s position on facial normalization surgery in “Cosmetic surgery for children with Down syndrome,” at http://www.ndss.org/index.php?option=com_content&view=article&id=153&limitstart=6. Mitchell Zuckoff also discusses the subject in Choosing Naia: A Family’s Journey (2002).

195 This passage is based on my interview with Michelle Smith in 2004.

198 The percentage of instances of Down syndrome that arise from spontaneous genetic mutation comes from D. Mutton et al., “Cytogenetic and epidemiological findings in Down syndrome, England and Wales 1989 to 1993,” Journal of Medical Genetics 33, no. 5 (May 1996). For a recent review of DS genetics, see David Patterson, “Genetic mechanisms involved in the phenotype of Down syndrome,” Mental Retardation & Developmental Disabilities Research Reviews 13, no. 3 (October 2007).

198 For statistics on termination of DS pregnancies I have relied upon Caroline Mansfield et al., “Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review,” Prenatal Diagnosis 19, no. 9 (September 1999). Mansfield came up with a 92 percent rate, which has been the standard number for many years. A recent meta-analysis, however, suggests that Mansfield’s estimate is inflated, and that the abortion rate is somewhat less than that; see Jaime L. Natoli et al., “Prenatal diagnosis of Down syndrome: A systematic review of termination rates (1995–2011),” Prenatal Diagnosis 32, no. 2 (February 2012).

198 Figures on life expectancy in Down syndrome come from David Strauss and Richard K. Eyman, “Mortality of people with mental retardation in California with and without Down syndrome, 1986–1991,” American Journal on Mental Retardation 100, no. 6 (May 1996); Jan Marshall Friedman et al., “Racial disparities in median age at death of persons with Down syndrome: United States, 1968–1997,” Morbidity & Mortality Weekly Report 50, no. 22 (June 8, 2001); and Steven M. Day et al., “Mortality and causes of death in persons with Down syndrome in California,” Developmental Medicine & Child Neurology 47, no. 3 (March 2005).

199 The study finding that more than a quarter of respondents would not choose a cure for DS if one was available was described by Karen Kaplan, “Some Down syndrome parents don’t welcome prospect of cure,” Los Angeles Times, November 22, 2009. Kaplan was quoting and reporting on a paper presented by Angela Inglis, Catriona Hippman, and Jehannine C. Austin, “Views and opinions of parents of individuals with Down syndrome: Prenatal testing and the possibility of a ‘cure’?,” abstract published in Courtney Sebold, Lyndsay Graham, and Kirsty McWalter, “Presented abstracts from the Twenty-Eighth Annual Education Conference of the National Society of Genetic Counselors (Atlanta, Georgia, November 2009),” Journal of Genetic Counseling 18, no. 6 (November 2009).

199 For statistics on DS population trends, I have relied on a report by the US Centers for Disease Control, “Down syndrome cases at birth increased” (2009); Joan K. Morris and Eva Alberman, “Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: Analysis of data from the National Down Syndrome Cytogenetic Register,” British Medical Journal 339 (2009); and Guido Cocchi et al., “International trends of Down syndrome, 1993–2004: Births in relation to maternal age and terminations of pregnancies,” Birth Defects Research Part A: Clinical and Molecular Teratology 88, no. 6 (June 2010).

Articles protesting the increase of targeted abortions for DS include Lillibeth Navarro’s “People don’t want a child like me,” Los Angeles Times, September 4, 1991; Timothy Shriver, “Silent eugenics: Abortion and Down syndrome,” Commonweal 134, no. 19 (November 9, 2007); George Will, “Golly, what did Jon do?,” Newsweek, January 29, 2007; and Mary Carmichael, “New era, new worry: New tests for Down syndrome could lead to more abortions and less support for families,” Newsweek, December 15, 2008.

199 Figures on the percentage of children with Down syndrome born to women under thirty-five come from the National Down Syndrome Society. For more on the factors at play in decision-making following prenatal testing, see Miriam Kupperman et al., “Beyond race or ethnicity and socioeconomic status: Predictors of prenatal testing for Down syndrome,” Obstetrics & Gynecology 107, no. 5 (May 2006).

199 Socioeconomic differences in attitudes toward parenting Down syndrome children are explored in Annick-Camille Dumaret et al., “Adoption and fostering of babies with Down syndrome: A cohort of 593 cases,” Prenatal Diagnosis 18, no. 5 (May 1998).

199 Predictions that the population of people with DS might double by 2025 come from Jean A. Rondal, “Intersyndrome and intrasyndrome language differences,” in Jean A. Rondal et al., Intellectual Disabilities: Genetics, Behaviour and Inclusion (2004).

199 The American College of Obstetricians and Gynecologists recommended universal nuchal translucency screening in “Screening for fetal chromosomal abnormalities,” ACOG Practice Bulletin 77 (January 2007). Press reports on the recommendations include Roni Rabin, “Screen all pregnancies for Down syndrome, doctors say,” New York Times, January 9, 2007; and Amy Harmon, “The DNA age: Prenatal test puts Down syndrome in hard focus,” New York Times, May 9, 2007.

199 George Will used the phrase search and destroy in his article “Golly, what did Jon do?,” Newsweek, January 29, 2007.

199 For a study of the impact of parent-to-parent contact on pregnant women’s decisions on abortion after prenatal diagnosis of Down syndrome, see Karen L. Lawson and Sheena A. Walls-Ingram, “Selective abortion for Down syndrome: The relation between the quality of intergroup contact, parenting expectations, and willingness to terminate,” Journal of Applied Social Psychology 40, no. 3 (March 2010). Advocacy for parent education is discussed in Adrienne Asch, “Prenatal diagnosis and selective abortion: A challenge to practice and policy,” American Journal of Public Health 89, no. 11 (November 1999); Adrienne Asch and Erik Parens, “The disability rights critique of prenatal genetic testing: Reflections and recommendations,” in Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch (2000); Lynn Gillam, “Prenatal diagnosis and discrimination against the disabled,” Journal of Medical Ethics 25, no. 2 (April 1999); and Rob Stein, “New safety, new concerns in tests for Down syndrome,” Washington Post, February 24, 2009.

199 Stephen Quake is quoted in Dan Hurley, “A drug for Down syndrome,” New York Times, July 29, 2011. Quake’s work is also discussed in Jocelyn Kaiser, “Blood test for mom picks up Down syndrome in fetus,” ScienceNOW Daily News, October 6, 2008; Andrew Pollack, “Blood tests ease search for Down syndrome,” New York Times, October 6, 2008; and Amy Dockser Marcus, “New prenatal tests offer safer, early screenings,” Wall Street Journal, June 28, 2011.

199 Babak Khoshnood et al. anticipate an increase in economic stratification of families with Down syndrome children in “Advances in medical technology and creation of disparities: The case of Down syndrome,” American Journal of Public Health 96, no. 12 (December 2006).

200 Michael Bérubé discusses the long-term ramifications of reductions in support for families with DS children in Amy Harmon, “The problem with an almost-perfect genetic world,” New York Times, November 20, 2005.

200 The study finding that women who after testing knowingly choose to give birth to a child with Down syndrome are more harshly judged than those who had no opportunity for testing is Karen L. Lawson, “Perceptions of deservedness of social aid as a function of prenatal diagnostic testing,” Journal of Applied Social Psychology 33, no. 1 (2003). The quotation appears on page 76.

200 The first quotation from Michael Bérubé (“So much depends . . .”) occurs on page 78 of Life as We Know It (1996); the second comes from Amy Harmon, “The problem with an almost-perfect genetic world,” New York Times, November 20, 2005.

200 Pharmaceutical advances in the treatment of Down syndrome are discussed in Dan Hurley, “A drug for Down syndrome,” New York Times, July 29, 2011.

200 The study finding improvement in hippocampal development in mice administered Prozac is Sarah Clark et al., “Fluoxetine rescues deficient neurogenesis in hippocampus of the Ts65Dn mouse model for Down syndrome,” Experimental Neurology 200, no. 1 (July 2006); for the memantine study, see Albert C. S. Costa et al., “Acute injections of the NMDA receptor antagonist memantine rescue performance deficits of the Ts65Dn mouse model of Down syndrome on a fear conditioning test,” Neuropsychopharmacology 33, no. 7 (June 2008).

200 The study finding improvement in mice following elevation of norepinephrine levels is Ahmad Salehi et al., “Restoration of norepinephrine-modulated contextual memory in a mouse model of Down syndrome,” Science Translational Medicine 1, no. 7 (November 2009).

200 See William J. Netzer et al., “Lowering ?-amyloid levels rescues learning and memory in a Down syndrome mouse model,” PLoS ONE 5, no. 6 (2010).

200 Quotations by William Mobley, Craig C. Garner, and Albert Costa come from Dan Hurley, “A drug for Down syndrome,” New York Times, July 29, 2011.

201 This passage is based on my interview with Angelica Roman-Jiminez in 2007.

203 The quotation from Martha Nibley Beck (“If you’ll cast your mind back to high school biology . . .”) occurs on pages 327–28 of Expecting Adam (1999).

203 The quotation about babyfaceness comes from the study of the pitch of parents’ voices comes from Deborah J. Fidler, “Parental vocalizations and perceived immaturity in Down syndrome,” American Journal on Mental Retardation 108, no. 6 (November 2003).

204 Fathers’ adaptation to Down syndrome is discussed in W. Steven Barnett and Glenna C. Boyce, “Effects of children with Down syndrome on parents’ activities,” American Journal on Mental Retardation 100, no. 2 (September 1995); L. A. Ricci and Robert M. Hodapp, “Fathers of children with Down’s syndrome versus other types of intellectual disability: Perceptions, stress and involvement,” Journal of Intellectual Disability Research 47, nos. 4–5 (May–June 2003); and Jennifer C. Willoughby and Laraine Masters Glidden, “Fathers helping out: Shared child care and marital satisfaction of parents of children with disabilities,” American Journal on Mental Retardation 99, no. 4 (January 1995).

204 There are a great many studies of the experiences of siblings of disabled children. Researchers focusing on the subject include Brian G. Skotko, Jan Blacher, and Zolinda Stoneman.

Blacher, Jan, ed. Severely Handicapped Young Children and Their Families: Research in Review. Orlando, FL: Academic Press, 1984.

Burton, Sally L., and A. Lee Parks. “Self-esteem, locus of control, and career aspirations of college-age siblings of individuals with disabilities.” Social Work Research 18, no. 3 (September 1994): 178–85.

Cuskelly, Monica, and Pat Gunn. Maternal reports of behavior of siblings of children with Down syndrome.” American Journal on Mental Retardation 97, no. 5 (March 1993): 521–29.

Eisenberg, Laurie, et al. “Siblings of children with mental retardation living at home or in residential placement.” Journal of Child Psychology & Psychiatry 39, no. 3 (March 1998): 355–63.

Gath, Ann, and Dianne Gumley. “Retarded children and their siblings.” Journal of Child Psychology & Psychiatry 28, no. 5 (September 1987): 715–30.

Grossman, Frances Kaplan. Brothers and Sisters of Retarded Children: An Exploratory Study. Syracuse, NY: Syracuse University Press, 1972.

McHale, Susan, and Wendy Gamble. “Sibling relationships of children with disabled and nondisabled brothers and sisters.” Developmental Psychology 25, no. 3 (May 1989): 421–29.

Rossiter, Lucille, and Donald Sharpe. “The siblings of individuals with mental retardation: A quantitative integration of the literature.” Journal of Child & Family Studies 10, no. 1 (March 2001): 65–84.

Skotko, Brian G., and Susan P. Levine. “What the other children are thinking: Brothers and sisters of persons with Down syndrome.” American Journal of Medical Genetics Part C: Seminars in Medical Genetics 142C, no. 3 (August 15, 2006): 180–85.

Skotko, Brian G., Susan P. Levine, and Richard Goldstein. “Having a brother or sister with Down syndrome: Perspectives from siblings.” American Journal of Medical Genetics Part A 155, no. 10 (October 2011): 2348–59.

Stoneman, Zolinda. “Supporting positive sibling relationships during childhood.” Mental Retardation & Developmental Disability Research Reviews 7 (May 2001): 134–42.

Stoneman, Zolinda, and Phyllis Waldman Berman, editors. The Effects of Mental Retardation, Disability, and Illness on Sibling Relationships. Baltimore: Paul H. Brookes, 1993.

Stoneman, Zolinda, et al. “Childcare responsibilities, peer relations, and sibling conflict: Older siblings of mentally retarded children.” American Journal on Mental Retardation 93, no. 2 (September 1988): 174–83.

———.“Ascribed role relations between children with mental retardation and their younger siblings.” American Journal on Mental Retardation 95, no. 5 (March 1991): 537–50.

Summers, Carl R., K. R. White, and M. Summers. “Siblings of children with a disability: A review and analysis of the empirical literature.” Journal of Social Behavior & Personality 9, no. 5 (1994): 169–84.

Summers, Jeanne Ann, Shirley K. Behr, and Ann P. Turnbull. “Positive adaptation and coping strengths of families who have children with disabilities.” In Support for Caregiving Families: Enabling Positive Adaptation to Disability, ed. George H. S. Singer and Larry K. Irvin, 27–40. Baltimore: Paul H. Brookes, 1989.

Wilson, Judith, et al. “Siblings of children with severe handicaps.” Mental Retardation 27, no. 3 (June 1989): 167–73.

204 The quotation from Colgan Leaming comes from her article “My brother is not his disability,” Newsweek Web Exclusive, June 1, 2006.

205 This passage is based on my interviews with Susan Arnsten, Adam Delli-Bovi, Teegan Delli-Bovi, and William Walker Russell III in 2007 and subsequent communications. Susan’s artwork may be seen at http://fineartamerica.com/profiles/susan-arnstenrussell.html.

207 Exodus 37:9: “The cherubs were with wings spread upwards, sheltering the Ark cover . . . with their faces toward one another.”

210 Statistics on the percentage of mentally retarded adults who live with their parents come from Tamar Heller, Alison B. Miller, and Alan Factor, “Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal,” Mental Retardation 35, no. 5 (October 1997); see also Clare Ansberry, “Parents devoted to a disabled child confront old age,” Wall Street Journal, January 7, 2004.

210 The quotation about nurturing and support comes from Arnold Birenbaum and Herbert J. Cohen, “On the importance of helping families,” Mental Retardation 31, no. 2 (April 1993).

210 The relationship between severity of disability and out-of-home placement is explored in Jan Blacher and Bruce L. Baker, “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).

210 The fears of siblings following outplacement of a family member are discussed in Frances Kaplan Grossman, Brothers and Sisters of Retarded Children: An Exploratory Study (1972).

210 For my discussion of families and placement of children with Down syndrome, I have relied upon the following papers by Bruce L. Baker and Jan Blacher: “Out-of-home placement for children with mental retardation: Dimensions of family involvement,” American Journal on Mental Retardation 98, no. 3 (November 1993); “For better or worse? Impact of residential placement on families,” Mental Retardation 40, no. 1 (February 2002); “Family involvement in residential treatment of children with retardation: Is there evidence of detachment?,” Journal of Child Psychology & Psychiatry 35, no. 3 (March 1994); and “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).

211 The quotation from the first mother (“I could never put my child in one of those places!”) occurs on pages 229–30 of Jan Blacher, When There’s No Place Like Home: Options for Children Living Apart from Their Natural Families (1994); the quotation from the second (“Calling the Regional Center was the scariest phone call I ever made”) comes from Jan Blacher and Bruce L. Baker, “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).

211 For discussion of the appropriateness of young people with Down syndrome leaving the family home at a similar age to typical young people, see Zolinda Stoneman and Phyllis Waldman Berman, editors, The Effects of Mental Retardation, Disability, and Illness on Sibling Relationships (1993).

211 Figures for the reduction in numbers and proportion of children and youth living in residential institutions come from K. Charlie Lakin, Lynda Anderson, and Robert Prouty, “Decreases continue in out-of-home residential placements of children and youth with mental retardation,” Mental Retardation 36, no. 2 (April 1998). According to the State of the States in Developmental Disabilities Project report “Top Ten State Spending on Institutional Care for People with Disabilities” (at http://www.centerforsystemschange.org/view.php?nav_id=54), “Alaska, District of Columbia, Hawaii, Maine, Michigan, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, and West Virginia no longer fund state-operated institutions for 16 or more persons,” leaving thirty-nine of the fifty states still funding state-operated institutions for sixteen or more persons. The increase in life expectancy of people with Down syndrome and other forms of intellectual disability is discussed in Matthew P. Janicki et al., “Mortality and morbidity among older adults with intellectual disability: Health services considerations,” Disability & Rehabilitation 21, nos. 5–6 (May–June 1999).

211 Information on the number of institutions visited by families prior to placement, and criteria used in evaluating them, come from Jan Blacher and Bruce L. Baker, “Out-of-home placement for children with retardation: Family decision making and satisfaction,” Family Relations 43, no. 1 (January 1994).

211 The quotation about abuses in residential facilities for the developmentally disabled in New York State comes from Danny Hakim, “At state-run homes, abuse and impunity,” New York Times, March 12, 2011.

212 Information on trends in residential placement and statistics on public expenditures for people with intellectual disabilities come from Robert W. Prouty et al., editors, “Residential services for persons with developmental disabilities: Status and trends through 2004,” Research and Training Center on Community Living, Institute on Community Integration/UCEDD College of Education and Human Development, University of Minnesota, July 2005; K. Charlie Lakin, Lynda Anderson, and Robert Prouty, “Decreases continue in out-of-home residential placements of children and youth with mental retardation,” Mental Retardation 36, no. 2 (April 1998); and K. Charlie Lakin, Lynda Anderson, and Robert Prouty, “Change in residential placements for persons with intellectual and developmental disabilities in the USA in the last two decades,” Journal of Intellectual & Developmental Disability 28, no. 2 (June 2003).

212 Parents describe their adult DS children as a comfort in Tamar Heller, Alison B. Miller, and Alan Factor, “Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal,” Mental Retardation 35, no. 5 (October 1997); and Clare Ansberry, “Parents devoted to a disabled child confront old age,” Wall Street Journal, January 7, 2004. Figures on the numbers of people with DS moved to residential placement after the death of their parents come from Marsha Mailick Seltzer and Marty Wyngaarden Krauss, “Quality of life of adults with mental retardation/developmental disabilities who live with family,” Mental Retardation & Developmental Disabilities Research Reviews 7, no. 2 (May 2001).

212 The quotation from the father about his DS daughter’s dwindling social life comes from a personal communication.

212 The study finding that adults with DS tend to socialize within their parents’ network of friends is Marty Wyngaarden Krauss, Marsha Mailick Seltzer, and S. J. Goodman, “Social support networks of adults with mental retardation who live at home,” American Journal on Mental Retardation 96, no. 4 (January 1992).

213 For more information on People First, see “History of People First,” http://www.peoplefirstwv.org/aboutpeoplefirst/history.html. Figures on the number of self-advocacy groups in the United States and the quotation given both come from the “People First Chapter Handbook and Toolkit” (2010), http://www.peoplefirstwv.org/images/PF_of_WV_Chapter_Handbook_final.pdf.

213 See Nigel Hunt, The World of Nigel Hunt: The Diary of a Mongoloid Youth (New York: Garrett Publications, 1967).

213 See Jason Kingsley and Mitchell Levitz, Count Us In: Growing Up with Down Syndrome (1994).

213 A transcript of Windy Smith’s speech at the 2000 Republican National Convention is hosted on the ABC News website at http://abcnews.go.com/Politics/story?id=123241&page=1. The quotation about “grotesque political theater” comes from Tom Scocca, “Silly in Philly,” Metro Times, August 9, 2000. Other writers noted how incongruous it was to consider President Bush any champion for the disabled, given Texas’s poor quality services, and the state’s legal position in a case centering on the right of institutionalized persons to choice in their living accommodations; see Martin Miller, “Is campaign’s path to the heart a proper one?,” Los Angeles Times, August 11, 2000. For a disability rights perspective on coverage of Windy Smith’s appointment to the presidential panel, see Dave Reynolds, “Media still leaves voices out,” Ragged Edge, May/June 2003.

214 For an interview with Chris Burke, see Jobeth McDaniel, “Chris Burke: Then and Now,” Ability Magazine, February 2007. Burke maintains a personal website at http://www.chrisburke.org; Bobby Brederlow’s is at http://www.bobby.de/. Judith Scott is the subject of her sister Joyce Scott’s memoir, EnTWINed (2006); see also John M. MacGregor, Metamorphosis: The Fiber Art of Judith Scott: The Outsider Artist and the Experience of Down’s Syndrome (1999). For an interview with Lauren Potter, see Michelle Diament, “Down syndrome takes center stage on Fox’s ‘Glee,’Disability Scoop, April 12, 2010.

214 For more information on short-term memory and information processing in Down syndrome, see Robert M. Hodapp and Elisabeth M. Dykens’s chapter, “Genetic and behavioural aspects: Application to maladaptive behaviour and cognition,” in Jean A. Rondal et al., Intellectual Disabilities: Genetics, Behaviour and Inclusion (2004).

214 Greg Palmer, Adventures in the Mainstream: Coming of Age with Down Syndrome (2005). Ned Palmer’s poem appears in the book on page 40; the quotation appears on page 98.

215 The marriage saga of Corky (Chris Burke) and Amanda (Andrea Friedman) begins at season 4, episode 3, “Premarital Syndrome” (originally broadcast on October 4, 1992; see http://www.tvguide.com/tvshows/life-goes-on-1992/episode-3-season-4/premarital-syndrome/202678). For the backstory on this love story, see Howard Rosenberg, “There’s more to ‘life’ than ratings,” Los Angeles Times, April 18, 1992, and “They’ll take romance,” People, April 6, 1992.

215 This passage is based on my interview with Tom and Karen Robards in 2007 and subsequent communications.

216 Cooke Center organizational website: http://www.cookecenter.org/.

217 For more information on this condition, see Lynn K. Paul et al., “Agenesis of the corpus callosum: Genetic, developmental and functional aspects of connectivity,” Nature Reviews: Neuroscience 8, no. 4 (April 2007).

 

V: Autism

221 My source for historical information on autism prevalence, and autism in general, is Laura Schreibman, The Science and Fiction of Autism (2005). On March 30, 2012, the CDC upped its autism prevalence estimates from 1:110 to 1:88; see Jon Baio, “Prevalence of autism spectrum disorders: Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008,” Morbidity & Mortality Weekly Report (MMWR), March 30, 2012.

221 The quotation from Eric Kandel comes from my interview with him in 2009. He has spoken about this, also, in Eric Kandel, “Interview: biology of the mind,” Newsweek, March 27, 2006.

222 According to the Coalition for SafeMinds website at http://safeminds.org, “SafeMinds” stands for “Sensible Action for Ending Mercury-Induced Neurological Disorders.”

222 The full text of the Combating Autism Act of 2006 (Public Law 109–416) can be found at http://thomas.loc.gov/cgi-bin/bdquery/z?d109:S843:; the text of the Combating Autism Reauthorization Act of 2011 (Public Law 112–32) can be found at http://thomas.loc.gov/cgi-bin/query/z?c112:H.R.2005:. The role of parent advocacy groups in promoting the bill is described in Ed O’Keefe’s report for ABC News, “Congress declares war on autism,” broadcast December 6, 2006. Cure Autism Now and Autism Speaks merged in 2007; see Autism Speaks’ February 5, 2007, press release, “Autism Speaks and Cure Autism Now complete merger” (http://www.autismspeaks.org/about-us/press-releases/autism-speaks-and-cure-autism-now-complete-merger).

222 Thomas Insel’s remark was a personal communication.

222 The astonishing proliferation of books and films about autism is vividly revealed by WorldCat, a consolidated catalog of library holdings worldwide. A search of the keyword autism for 1997 yields 1,221 items; for 2011, 7,486 items.

222 The diagnostic criteria for autism (“299.00 Autistic Disorder”), Asperger syndrome (“299.80 Asperger’s Disorder”), and PDD-NOS (“299.80 Pervasive Developmental Disorder Not Otherwise Specified”) can be found in Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR, 4th ed. (2000), pages 70–84.

222 For a reliable, basic introduction to autism, see Shannon des Roches Rosa et al., The Thinking Person’s Guide to Autism (2011).

223 Sources of estimates on the incidence of regression in autism include C. Plauché Johnson et al., “Identification and evaluation of children with autism spectrum disorders,” Pediatrics 120, no. 5 (November 2007); Gerry A. Stefanatos, “Regression in autistic spectrum disorders,” Neuropsychology Review 18 (December 2008); Sally J. Rogers, “Developmental regression in autism spectrum disorders,” Mental Retardation & Developmental Disabilities Research Review 10, no. 2 (May 2004); and Robin L. Hansen, “Regression in autism: Prevalence and associated factors in the CHARGE study,” Ambulatory Pediatrics 8, no. 1 (January 2008).

223 Emily Perl Kingsley’s 1987 essay, “Welcome to Holland,” can be found all over the Internet, as well as in Jack Canfield, Chicken Soup for the Soul: Children with Special Needs (2007). Susan Rzucidlo’s retort, “Welcome to Beirut,” also self-published, can be found at http://www.bbbautism.com/beginners_beirut.htm and on a few dozen other websites.

224 My original work on neurodiversity may be found in my article “The autism rights movement,” New York, May 25, 2008.

224 This passage is based on numerous interviews with Betsy Burns and Jeff Hansen between 2003 and 2012 and other communications.

225 The neurologist was perhaps overly pessimistic to assert that Cece would never talk if she hadn’t begun to do so after intensive early intervention; a 2004 paper concluded that 90 percent of autistic children develop functional speech by the age of nine: Catherine Lord et al., “Trajectory of language development in autistic spectrum disorders,” in Developmental Language Disorders: From Phenotypes to Etiologies (2004).

225 Jim Simons, who has been a leading funder of autism research through the Simons Foundation, noted in a personal communication that when his daughter got a fever, her autism symptoms dissipated and she was able to function better than she usually could. That other bodily conditions might have some impact on the expression of autistic symptoms and might underlie sudden, nonpermanent transformations such as Cece’s is a subject of investigation, though there is not enough science yet to make therapeutic use of the idea. For a discussion of the correlation between fever and behavioral improvement, see L. K. Curran et al., “Behaviors associated with fever in children with autism spectrum disorders,” Pediatrics 120, no. 6 (December 2007); Mark F. Mehler and Dominick P. Purpura, “Autism, fever, epigenetics and the locus coeruleus,” Brain Research Reviews 59, no. 2 (March 2009); and David Moorman, “Workshop report: Fever and autism,” Simons Foundation for Autism Research, April 1, 2010, http://sfari.org/news-and-opinion/workshop-reports/2010/workshop-report-fever-and-autism.

226 The first quotation from Elizabeth (Betsy) Burns’s 2003 novel, Tilt: Every Family Spins on Its Own Axis, occurs on page 96, the second on pages 43–44.

226 Researchers have found a higher-than-average incidence of psychiatric conditions among family members of individuals with autism; e.g., Mohammad Ghaziuddin, “A family history study of Asperger syndrome,” Journal of Autism and Developmental Disorders 35, no. 2 (2005); and Joseph Piven and Pat Palmer. “Psychiatric disorder and the broad autism phenotype: Evidence from a family study of multiple-incidence autism families,” American Journal of Psychiatry 156, no. 14 (April 1999).

229 With respect to the litany of medications, Abilify (aripiprazole) is an atypical antipsychotic and antidepressant; Topamax (topiramate) is an anticonvulsant; Seroquel (quetiapine) is an atypical antipsychotic often used off-label for treatment of anxiety and insomnia; Prozac (fluoxetine) is a selective serotonin reuptake inhibitor; Ativan (lorazepam) is a benzodiazepine and antianxiolytic; Depakote (valproate semisodium) is used in the treatment of depression, bipolar disorder, and epilepsy; Trazodone is an antidepressant and antianxiolytic; Risperdal (risperidone) is an atypical antipsychotic used in the treatment of schizophrenia and mania; Anafranil (clomipramine) is a tricyclic antidepressant; Lamictal (lamotrigine) is an anticonvulsant used in the treatment of epilepsy and bipolar disorder; Benadryl (diphenhydramine) is an antihistamine; Melatonin is a hormone used in the regulation of sleep-wake cycles; and Calms Forté is homeopathic preparation containing infinitesimal amounts of passionflower, oats, hops, and chamomile, and plenty of sugar.

230 In a mixed manic episode, mania and depression are experienced simultaneously or in rapid sequence. This family’s experience is not rare. Researchers have found a higher-than-average incidence of psychiatric conditions among family members of individuals with autism; e.g., Mohammad Ghaziuddin, “A family history study of Asperger syndrome,” Journal of Autism and Developmental Disorders 35, no. 2 (2005); and Joseph Piven and Pat Palmer, “Psychiatric disorder and the broad autism phenotype: Evidence from a family study of multiple-incidence autism families,” American Journal of Psychiatry 156, no. 14 (April 1999).

231 The Oxford English Dictionary, 2nd ed. (1989), offers the following passage from Eugen Bleuler’s 1913 paper, “Autistic thinking,” American Journal of Insanity 69 (1913), page 873: “When we look more closely we find amongst all normal people many and important instances where thought is divorced both from logic and from reality. I have called these forms of thinking autistic, corresponding to the idea of schizophrenic autismus.” An earlier instance, from Bleuler’s 1911 paper “Dementia praecox oder gruppe der schizophrenien,” is quoted in Josef Parnas et al., “Schizophrenic autism: Clinical phenomenology and pathogenic implications,” World Psychiatry 1, no. 3 (October 2002), page 131: “The . . . schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes . . . ; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolute predominance of the inner life, we term autism.”

231 The term childhood schizophrenia was coined in the 1930s and was loosely used to refer to a wide range of cognitive impairments manifesting in early childhood. Propagators of the term include Lauretta Bender, a child psychiatrist practicing at Bellevue Hospital, who published numerous reports of her clinical observations. For a contemporary expression of concern about the inappropriate application of the term, see Hilde L. Mosse, “The misuse of the diagnosis childhood schizophrenia,” American Journal of Psychiatry 114, no. 9 (March 1958); Robert F. Asarnow and Joan Rosenbaum Asarnow review the history of the diagnosis in “Childhood-onset schizophrenia: Editors’ introduction,” Schizophrenia Bulletin 20, no. 4 (October 1994).

231 Leo Kanner’s seminal 1943 report, “Autistic disturbances of affective contact,” is included in an anthology of his papers, Childhood Psychosis: Initial Studies and New Insights (1973).

231 In 1943, Kanner noted the supposed coldness of the mothers of autistic children, but left open the possibility that the condition was inborn. See “Autistic disturbances of affective contact,” in Childhood Psychosis: Initial Studies and New Insights (1973), page 42: “One other fact stands out prominently. In the whole group, there are very few really warmhearted fathers and mothers. For the most part, the parents, grandparents, and collaterals are persons preoccupied with abstractions of a scientific, literary or artistic nature, and limited in general interest in people. Even some of the happiest marriages are cold and formal affairs. Three of the marriages were dismal failures. The question arises whether or to what extent this fact has contributed to the condition of the children. The children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of the early parental relations with our patients.”

By 1949, Kanner had more fully developed his parent-blaming theory; the term refrigerator appears twice in his 1949 article “Problems of nosology and psychodynamics in early childhood autism,” American Journal of Orthopsychiatry 19, no. 3 (July 1949). From the paper: “The parents’ behavior toward the children must be seen to be fully appreciated. Maternal lack of genuine warmth is often conspicuous in the first visit to the clinic. As they come up the stairs, the child trails forlornly behind the mother, who does not bother to look back. The mother accepts the invitation to sit down in the waiting room, while the child sits, stands, or wanders about at a distance. Neither makes a move toward the other. Later, in the office, when the mother is asked under some pretext to take the child on her lap, she usually does so in a dutiful, stilted manner, holding the child upright and using her arms solely for the mechanical purpose of maintaining him in his position. I saw only one mother of an autistic child who proceeded to embrace him warmly and bring her face close to his. Some time ago, I went to see an autistic child, the son of a brilliant lawyer. I spent an evening with the family. Donald, the patient, sat down next to his mother on the sofa. She kept moving away from him as though she could not bear the physical proximity. When Donald moved along with her, she finally told him coldly to go and sit on a chair.

“Many of the fathers hardly know their autistic children. They are outwardly friendly, admonish, teach, observe ‘objectively,’ but rarely step down from the pedestal of somber adulthood to indulge in childish play. One father, a busy and competent surgeon, had three children. The first, a girl, was docile, submissive, and gave no cause for concern to the parents. The second, a boy, was very insecure and stuttered badly. The third, George, was an extremely withdrawn, typically autistic child. The father, who once told me proudly that he never wasted his time talking to his patients’ relatives, did not see anything wrong with George, who was merely ‘a little slow’ and would ‘catch up’ eventually. When nothing could shake this man’s smiling impassiveness, I tried to arouse his anger by asking him if he would recognize any of his children if they passed him on a busy street. Far from being irked, he deliberated for a while and replied, just as impassively, that he was not sure that he would. This seemingly unemotional objectivity, applied to oneself and to others, is a frequent expression of the mechanization of human relationships.

“The void created by the absence of wholehearted interest in people is occupied by a devotion to duty. Most of the fathers are, in a sense, bigamists. They are wedded to their jobs at least as much as they are married to their wives. The job, in fact, has priority. Many of the fathers remind one of the popular conception of the absent-minded professor who is so engrossed in lofty abstractions that little room is left for the trifling details of everyday living. Many of the fathers and most of the mothers are perfectionists. Obsessive adherence to set rules serves as a substitute for the enjoyment of life. These people, who themselves had been reared sternly in emotional refrigerators, have found at an early age that they could gain approval only through unconditional surrender to standards of perfection. It is interesting that, despite their high intellectual level, not one of the parents has displayed any really creative abilities. They make good teachers in the sense that they can transmit that which they have learned. They are essentially conservative repeaters of that which they have been taught. This is not quite true of many of the grandfathers, some of whom have established flourishing businesses, expounded original theories, or produced fairly successful pieces of fiction and art.”

From page 425: “I have dwelt at some length on the personalities, attitudes, and behavior of the parents because they seem to throw considerable light on the dynamics of the children’s psychopathologic condition. Most of the patients were exposed from the beginning to parental coldness, obsessiveness, and a mechanical type of attention to material needs only. They were the objects of observation and experiment conducted with an eye on fractional performance rather than with genuine warmth and enjoyment. They were kept neatly in refrigerators which did not defrost. Their withdrawal seems to be an act of turning away from such a situation to seek comfort in solitude.”

Over a decade later, Kanner continued with the refrigerator metaphor in this statement to a Time reporter, reported in “The child is father,” Time, July 25, 1960: “But there is one type of child to whom even Kanner cannot get close. All too often this child is the offspring of highly organized, professional parents, cold and rational—the type that Dr . Kanner describes as ‘just happening to defrost enough to produce a child.’ The youngster is unable, because of regression or a failure in emotional development, to establish normal relations with his parents or other people.”

These themes were also developed by Kanner’s colleague Leon Eisenberg; see his articles “The autistic child in adolescence,” American Journal of Psychiatry 112, no. 8 (February 1956); and “The fathers of autistic children,” American Journal of Orthopsychiatry 27, no. 4 (October 1957).

But Kanner’s attributions changed as understanding of the neurological basis of autism evolved. From a remembrance by his colleagues Eric Schopler, Stella Chess, and Leon Eisenberg, “Our memorial to Leo Kanner,” Journal of Autism & Developmental Disorders 11, no. 3 (September 1981), page 258: “The man credited with the term ‘refrigerator mother’ explained to the members of the National Society for Autistic Children, at their annual meeting in 1971, that the blame for their child’s autism implied by this term was now established as inappropriate and incorrect.”

231 Bruno Bettelheim’s notorious statement “The precipitating factor in infantile autism is the parent’s wish that his child should not exist” occurs on page 125 of The Empty Fortress: Infantile Autism and the Birth of the Self (1967).

231 Interview with Isabelle Rapin in 2009. Rapin has recently published a two-part professional memoir; see Isabelle Rapin, “Paths to the making of an academic clinical investigator,” pt. 1, Brain Development 33, no. 6 (June 2011); and pt. 2, Brain Development 33, no. 7 (August 2011).

231 Bernard Rimland posited a biological hypothesis of autism causation in Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (1964).

231 Laura Schreibman, The Science and Fiction of Autism (2005), is the source of the refrigerator name-tag anecdote. From pages 84–85: “It is widely rumored that these first attendees wore name tags in the shape of little refrigerators.”

231 The quotation from Eustacia Cutler occurs on page 208 of her autobiography, A Thorn in My Pocket (2004).

231 Asperger’s original paper was published in German during World War II: Hans Asperger, “Die ‘autistischen psychopathen’ im kindesalter,” Archiv für Psychiatrie & Nervenkrankheiten (European Archives of Psychiatry and Clinical Neuroscience) 117, no. 1 (1944), pages 76–136. Uta Frith translated the paper into English in 1981, giving it the title “‘Autistic psychopathy’ in childhood”; that translation was later included in the anthology Autism and Asperger Syndrome (1991).

232 The little professor moniker’s first appearance in the professional literature occurs in Hans Asperger, “Die ‘autistischen psychopathen’ im kindesalter,” Archiv für Psychiatrie & Nervenkrankheiten (European Archives of Psychiatry and Clinical Neuroscience) 117, no. 1 (1944). From page 118: “Die aus einer Kontaktstörung kommende Hilflosigkeit dem praktischen Leben gegenüber, welche den ‘Professor’ charakterisiert und zu einer unsterblichen Witzblattfigur macht, ist ein Beweis dafür.” The phrase resurfaces from time to time in the popular media, such as in journalist Lawrence Osborne’s article “Little professor syndrome,” New York Times, June 18, 2000.

232 Tony Attwood’s Asperger’s Syndrome: A Guide for Parents and Professionals (1998) and The Complete Guide to Asperger’s Syndrome (2006) are both useful introductions. See also Uta Frith, “Asperger and his syndrome,” in Autism and Asperger Syndrome, edited by Uta Frith (1991); Ami Klin, Fred Volkmar, and Sara Sparrow’s book Asperger Syndrome (2000); and Sally Ozonoff et al., A Parent’s Guide to Asperger Syndrome and High Functioning Autism (2002).

232 On proposals for revisions to the DSM-5 diagnostic criteria for autistic spectrum disorders, see Claudia Wallis, “A powerful identity, a vanishing diagnosis,” New York Times, November 2, 2009; and Benedict Carey, “New definition of autism will exclude many, study suggests,” New York Times, January 19, 2012. For scholarly discussions of the DSM changes, see Mohammad Ghaziuddin, “Should the DSM V drop Asperger syndrome?,” Journal of Autism & Developmental Disorders 40, no. 9 (September 2010); and Lorna Wing et al., “Autism spectrum disorders in the DSM-V: Better or worse than the DSM-IV?,” Research in Developmental Disabilities 32, no. 2 (March–April 2011).

232 All of these anecdotes about social deficits of individuals with Asperger syndrome come from personal communications.

232 Temple Grandin’s story first came to widespread attention through the title essay in Oliver Sacks, An Anthropologist on Mars (1995), and through her autobiography, Thinking in Pictures: And Other Reports from My Life with Autism (1995). She has also been the subject of several television programs, including the 2006 BBC documentary The Woman Who Thinks Like a Cow, and the HBO biopic Temple Grandin.

The ASAN organizational website is at http://www.autisticadvocacy.org/. For an interview with Ari Ne’eman, see Claudia Kalb, “Erasing autism,” Newsweek, May 25, 2009.

233 Temple Grandin likened her mind to an Internet search engine in an interview with me in 2004. She had previously used the image in her autobiography, Thinking in Pictures: And Other Reports from My Life with Autism (1995), page 31.

233 The quotation from John Elder Robison occurs on page 2 of Look Me in the Eye: My Life with Asperger’s (2007).

233 This passage is based on my interview with Jennifer Franklin in 2008 and subsequent communications. The quotations from poems are from her book Persephone’s Ransom (2011).

235 My basic source on ABA is Laura Ellen Schreibman, The Science and Fiction of Autism (2005). Works by O. Ivar Lovaas include “Behavioral treatment and normal educational and intellectual functioning in young autistic children,” Journal of Consulting & Clinical Psychology 55, no. 1 (February 1987); and “The development of a treatment-research project for developmentally disabled and autistic children,” Journal of Applied Behavior Analysis 26, no. 4 (Winter 1993).

236 The passage from Scott Sea occurs in his article “Planet autism,” Salon, September 27, 2003. It has been condensed. In full: “When you see the balled-up pants and diaper on the floor you know you are too late. A bright red smear across the door, the molding, the wall. Turn the corner and the bedroom is a crime scene. An ax murder? In fact, it is only your daughter at her worst. (Worse than three days without sleep? Worse than ear-splitting screams that physically hurt, actually cause you to drop what you hold in alarm, compel you to shriek back at your delighted child who smiles at you sincere as a spring day?) Shit everywhere. Splashes of blood glistening like paint, black clots, yellow-brown feces, and a 3-foot-in-diameter pond of vomit that your daughter stands in the middle of, a dog-eared copy of Family Circle in one hand, reaching for the TV with the other. She is naked except for stockinged feet, blood soaked up to her ankles. Hands dripping, face marked like a cannibal, she wears an expression of utter bewilderment: What’s happened to me? Where am I? Is this good? Am I OK? There being nowhere to walk without stepping in some bodily emission, you throw bath towels down like a bridge to get to her.

“Stripping her unavoidably stains you. A bloody hand print on the square of your back as she balances herself when you roll down her sopping stockings. You hope she touches nothing else but what does it matter as the bathroom remains appalling in spite of the previous cleanups: cabinet handles encrusted with dried excrement, brown swipes on the light switch, corner of the mirror, shampoo bottle, Q-tips, ceramic figurines, curtain louvers. (Holiday guests take you aside to warn you of rodents in unusual locations. Ancient turds in drawers, inside books. You thank them. Apologize. Yeah, it’s an ongoing problem.)

“In the warm rain of the shower she proceeds to dig. She is excavating for what remains of the impacted stool, hard as a French roll. This entire episode, this habit, the result of some maddening control issue. The behaviorists, the gastroenterologists, the living-skills experts all suggest their strategies and therapies and videos and diets and oils and schedules. Certainly she knows what you want—appropriate toileting. And there are occasions when she does just that. Goes in, sits, finishes. This, maybe 5 percent of the time. Some huge, softball-size stool discovered in the toilet bowl. You shout for each other and gaze in wonder as at a rainbow or falling star. That’s how excited you are.”

237 Juliet Mitchell’s comments are from personal communications. She has written about autism in Mad Men and Medusas: Reclaiming Hysteria (2000).

237 For a recent use of the changeling metaphor, see Portia Iversen, Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism (2006), pages xii–xiv: “It was his mind they came for. They came to steal his mind. Before anyone gave it a name, even before I knew what it was, I knew it was in our house. I can’t say exactly how I knew, except that I could feel it. Not that I wanted to, believe me. They were very very dark things and there was no way to get rid of them. Sometimes I could hear them late at night when the house was very quiet. A creaking sound, an inexplicable hiss, a miniscule pop, a whistle out of nowhere. And when I closed my eyes, I felt their shadows passing over me as they floated through the house and drifted invisibly with the smoke of the fireplace chimney out into space back to God knows where. I didn’t like to think about where they came from or where they were going. It was too frightening. Dov was only a baby and something was trying to steal him away. Sooner or later I knew I would catch them swirling above his crib. I knew that was what they did whenever I accidentally fell asleep. A violent thudding jolted my senses awake. My heart was banging like two fists in my chest. How long had I been sleeping? My eyes darted over to the crib I was supposed to be watching. He was still there. I could see him through the white wooden bars, asleep, his small body gently rising and falling with each little breath. Night after night I sat beside his crib. I knew he was slipping away from us, away from our world, and there was nothing I could do to stop it from happening. There was nothing anybody could do, they told me. So I did the only thing I could. I guarded him, although I knew it would do no good. Because I could not guard his mind. And then one day it had happened. He was gone.”

For scholarly discussion of changeling myths as a response to disability, see D. L. Ashliman, “Changelings,” Folklore & Mythology Electronic Texts, University of Pittsburgh, 1997, at http://www.pitt.edu/~dash/changeling.html; and Susan Schoon Eberly, “Fairies and the folklore of disability: Changelings, hybrids and the solitary fairy,” Folklore 99, no. 1 (1988). From Eberly: “Reidar Christiansen, in Hereditas, expresses the opinion that fairy belief arose in answer to some of the more puzzling of life’s mysteries—the questions of the ‘untimely death of young people, of mysterious epidemics among cattle, of climatic disaster, of both wasting diseases and strokes, of infantile paralysis and of the birth of mongol and otherwise deficient children.’

“Spence echoes this interpretation in his discussion of the fairy changeling: ‘Whenever a cretinous or diseased child made its appearance in a family, it was usually regarded as a changeling . . . The individual case was made to fit the superstition, and thus we possess no standardized data respecting the appearance of a changeling.’

“Various aspects of fairy belief which seem to be folk explanations for Christiansen’s ‘deficient’ and Spence’s ‘cretinous or diseased’ children will be discussed in this paper, using examples from the corpus of fairy lore in Britain. Specific examples of changelings, solitary fairies—both domesticated and reclusive—and the offspring of fairy-human matings will be presented which seem to offer identifiable portraits of children who were born, or who became, different as the result of identifiable congenital disorders which today are known to medical science.”

For two autistic activists’ perspectives, see Amanda Baggs, “The original, literal demons,” Autism Demonized, February 12, 2006, at http://web.archive.org/web/20060628231956/http://autismdemonized.blogspot.com/; and Ari Ne’eman, “Dueling narratives: Neurotypical and autistic perspectives about the autism spectrum,” 2007 SAMLA Convention, Atlanta, Georgia, November 2007, at http://www.cwru.edu/affil/sce/Texts_2007/Ne’eman.htm.

Baggs writes, “The following story may or may not be of an autistic person. It is certainly of a disabled person:

“‘Eight years ago [in the year 1532] at Dessau, I, Dr. Martin Luther, saw and touched a changeling. It was twelve years old, and from its eyes and the fact that it had all of its senses, one could have thought that it was a real child. It did nothing but eat; in fact, it ate enough for any four peasants or threshers. It ate, shit, and pissed, and whenever someone touched it, it cried. When bad things happened in the house, it laughed and was happy; but when things went well, it cried. It had these two virtues. I said to the Princes of Anhalt: ‘If I were the prince or the ruler here, I would throw this child into the water—into the Molda that flows by Dessau. I would dare commit homicidium on him!’ But the Elector of Saxony, who was with me at Dessau, and the Princes of Anhalt did not want to follow my advice. Therefore, I said: ‘Then you should have all Christians repeat the Lord’s Prayer in church that God may exorcise the devil.’ They did this daily at Dessau, and the changeling child died in the following year. . . . Such a changeling child is only a piece of flesh, a massa carnis, because it has no soul.

“That’s referenced in German Changeling Legends and usually attributed to Martin Luther (although it may have been one of his contemporaries), but the legends about us were pretty similar throughout many parts of Europe and European-conquered areas. We were stolen by demons or fairies and replaced with a changeling child, or an enchanted block of wood, or some other non-human thing. Or we were the result of a mating between the devil and a human woman. Whatever we were, we were quite literally demonized, cast in the role of demons, and the general advice was to get rid of us by any means necessary.

“This is interesting, because not a lot has really changed. The shape of the myth has remained the same, with new words replacing old ones depending on the area and era. Autistic people are still described as soulless. We’re still described as not quite, or not really, human (in a negative sense). We’re still supposed to be ‘rescued’ by any means necessary, even if the means of rescuing us is more dangerous than autism is. It’s interesting to go back to the ancient myths and find that it’s mainly the trappings that have changed.”

From Ne’eman’s paper: “In the present day, the ‘missing self’ canard—as well as defining the spectrum in reference to others rather than those actually on it—is ubiquitous in autism discussion. Jon Shestack, Portia Iverson’s husband and the co-founder of Cure Autism Now, writes, ‘This is the special curse of autism. You have your child, and yet you don’t have him. You have a shell, a ghost of all the dreams and hopes you ever had’ (‘More Can Changeling Rhetoric’). ‘I want my grandson back,’ announces Bob Wright, the founder of Autism Speaks, a major organization devoted to finding a cure for autism (Wright). ‘I had a perfectly normal baby. He hit all his developmental landmarks but after his first birthday. . . . My baby had been stolen away from us,’ states a mother of an autistic child. (‘Autism Spectrum Disorder Research Program 2007’). One autism parent memoir considered a ‘classic’—The Siege by Clara Claiborne Park—uses the ‘autism as child-thief’ metaphor at length, referring to the birth of an autistic child as akin to myths of fairies stealing babies in the night, only to replace them with mimicked shells of their former selves (C. Park). To quote Dr. Mitzi Waltz, a lecturer in Autism Studies at the University of Birmingham, ‘This metaphor is redolent of changeling myths, which may represent the oldest legends concerning autism as such. In these stories, the changeling must be killed, beaten, or abandoned, or the correct spell must be said, to force the return of the “real” child it replaced.’ (Waltz). Unfortunately, the acts of killing, beating, abandoning and even searching desperately for the correct ‘spell’ to ‘cure’ autism and thus return the hypothetical normal child are all too common amongst parents of autistic children, as they continue to play out the only autism paradigm most have ever known: a pyrrhic quest for a non-existent cure. This topic deserves further elaboration: what effect does the concept of cure have on parents who are reluctant to face the reality that the child born to them is different from the child they desired?

“. . . Autism Speaks broadcasts several television public service announcements informing us of the odds of a child achieving any one of a number of improbable events—starring in a Broadway show being one example—as compared to the much more likely odds of the viewer having a child with autism (Ad Council). The intended effect is clear. It is a call for parents to be afraid: if you dream for your children, if you aspire for them to achieve great things, then you should also fear for them—and donate to research for a ‘cure,’ lest the tragedy of autism take your child too. What is the result of following the fallacy of the missing self and the accompanying tragedy narrative of autism to its logical conclusion? If autistics are changelings—children not of this world and subject to the unspeakable presumption of tragedy that our modern media perception of autism is based upon—is it a surprise that some parents should try and excise the changeling, remove the cancer and thus end the tragedy they view themselves as playing a part in? To those parents, who have been conditioned to believe that their children are less than whole and thus less than human, are they performing a true act of murder? A causal relationship exists between the rhetoric that reinforces a diminished value for autistic life and personhood and the implementation of that idea in the form of the murder of people on the autism spectrum.”

237 Martin Luther’s assertion that changelings were only soulless pieces of flesh comes from Werke, Kritische Gesamtausgabe: Tischreden (1912–21), vol. 5, page 9, as cited in D. L. Ashliman, “German changeling legends,” Folklore & Mythology Electronic Texts, University of Pittsburgh, 1997, http://www.pitt.edu/~dash/changeling.html.

237 The quotation from Walter Spitzer comes from his article “The real scandal of the MMR debate,” Daily Mail, December 20, 2001. In full: “The most important thing I have learned in the past 18 months is that autism is a terminal illness. Autistic children are never cured or, at least, so rarely as for it to be a medical curiosity. If the side-effect of MMR was death, the concern would be much, much larger, but a deferred death—and in the most severe cases that is what autism is, a dead soul in a live body—just does not generate the concern that it should.”

238 Amanda Baggs, Autism Demonized, privately published weblog, 2006.

238 This passage is based on my interview with Nancy Corgi in 2007. All names in this passage are pseudonyms.

239 With respect to the litany of medications, Anafranil (clomipramine) is a tricyclic antidepressant; Risperdal (risperidone) is an atypical antipsychotic used in the treatment of schizophrenia and mania; and Paxil (paroxetine) is an SSRI antidepressant.

241 Reviews of language impairment and language development in autism include Morton Ann Gernsbacher, Heather M. Geye, and Susan Ellis Weismer, “The role of language and communication impairments within autism,” in Language Disorders and Developmental Theory, edited by P. Fletcher and J. F. Miller (2005); and Gerry A. Stefanatos and Ida Sue Baron. “The ontogenesis of language impairment in autism: A neuropsychological perspective,” Neuropsychology Review 21, no. 3 (September 2011). For discussion on oral-motor function in autism, see Morton Ann Gernsbacher et al., “Infant and toddler oral- and manual-motor skills predict later speech fluency in autism,” Journal of Child Psychology & Psychiatry 49, no. 1 (2008).

241 Alison Tepper Singer’s comments were made in an interview in 2007.

241 The quotations from Micki Bresnahan are from our interview in 2008; the unnamed mother expressed her view about learning Sign in a personal communication in 2008.

242 The quotations from Carly Fleischmann and her father come from two reports: John McKenzie, “Autism breakthrough: Girl’s writings explain her behavior and feelings,” ABC News, February 19, 2008; and Carly Fleischmann, “You asked, she answered: Carly Fleischmann, 13, talks to our viewers about autism,” ABC News, February 20, 2008.

242 The passage about Harry and Laura Slatkin is based on my interview with them in 2008 and subsequent communications.

243 New York Center for Autism organizational website: http://www.nyc4a.org/.

244 The scene described here appears in Autism Every Day.

245 The term the autisms was first proposed by Daniel H. Geschwind and Pat Levitt in “Autism spectrum disorders: Developmental disconnection syndromes,” Current Opinion in Neurobiology 17, no. 1 (February 2007). From the abstract: “Autism is a common and heterogeneous childhood neurodevelopmental disorder. Analogous to broad syndromes such as mental retardation, autism has many etiologies and should be considered not as a single disorder but, rather, as ‘the autisms.’”

245 The “mindblindness” hypothesis was proposed by Simon Baron-Cohen in Mindblindness: An Essay on Autism and Theory of Mind (1995).

245 Mirror neuron dysfunction in autism is discussed in Lindsay M. Oberman et al., “EEG evidence for mirror neuron dysfunction in autism spectrum disorders,” Cognitive Brain Research 24, no. 2 (July 2005); and Lucina Q. Uddin et al., “Neural basis of self and other representation in autism: An fMRI study of self-face recognition,” PLoS ONE 3, no. 10 (2008).

246 The “weak central coherence” hypothesis is proposed in Uta Frith, Autism: Explaining the Enigma (2003).

246 Arousal hypotheses are discussed in Corinne Hutt et al., “Arousal and childhood autism,” Nature 204 (1964); and Elisabeth A. Tinbergen and Nikolaas Tinbergen, “Early childhood autism: An ethological approach,” Advances in Ethology, Journal of Comparative Ethology, suppl. no. 10 (1972). Numerous respected autism researchers subsequently challenged Tinbergen regarding his speculations; see, e.g., Bernard Rimland et al., “Autism, stress, and ethology,” Science, n.s., 188, no. 4187 (May 2, 1975).

246 The quotations by Kamran Nazeer occur on pages 68 and 69 of Send in the Idiots: Stories from the Other Side of Autism (2006).

246 John Elder Robison speaks of his fondness for machines on page 12 of Look Me in the Eye: My Life with Asperger’s (2007).

246 For the report of the Yale face-processing study, see Robert T. Schultz et al., “Abnormal ventral temporal cortical activity during face discrimination among individuals with autism and Asperger syndrome,” Archives of General Psychiatry 57, no. 4 (April 2000). Additionally, Vicki Bruce and Andy Young’s In the Eye of the Beholder: The Science of Face Perception (1998) is a useful basic reference on the subject.

246 The Digimon aficionado features in David J. Grelotti et al., “fMRI activation of the fusiform gyrus and amygdala to cartoon characters but not to faces in a boy with autism,” Neuropsychologia 43, no. 3 (2005).

246 This passage is based on my interview with Bob, Sue, and Ben Lehr in 2008 and subsequent communications.

247 The seminal book on FC is Douglas Biklen’s Communication Unbound: How Facilitated Communication Is Challenging Traditional Views of Autism and Ability/Disability (1993). For an account by a college professor and personal acquaintance whose son communicates via FC, see Ralph James Savarese, Reasonable People: A Memoir of Autism and Adoption: On the Meaning of Family and the Politics of Neurological Difference (2007); see also the made-for-television feature, Autism Is a World (2006). The Autism National Committee supports the continued development of the technique; see its 2008 statement, “AutCom policy and principles regarding facilitated communication,” at http://www.autcom.org/articles/PPFC.pdf. Literature reviews that largely dismiss FC as ineffective include Mark P. Mostert, “Facilitated communication since 1995: A review of published studies,” Journal of Autism & Developmental Disabilities 31, no. 3 (June 2001), and “Facilitated communication and its legitimacy: Twenty-first century developments.” Exceptionality 18, no. 1 (January 2010). The American Academy of Pediatrics does not recommend FC outside of the research context; see American Academy of Pediatrics Policy Committee on Children with Disabilities, “Auditory integration training and facilitated communication for autism,” AAP Policy Committee on Children with Disabilities 102, no. 2 (1998).

249 For more information on brain development in autism, see Stephen R. Dager et al., “Imaging evidence for pathological brain development in autism spectrum disorders,” in Autism: Current Theories and Evidence (2008); Martha R. Herbert et al., “Localization of white matter volume increase in autism and developmental language disorder,” Annals of Neurology 55, no. 4 (April 2004); Eric Courchesne et al., “Evidence of brain overgrowth in the first year of life in autism,” Journal of the American Medical Association 290, no. 3 (July 2003); Nancy J. Minshew and Timothy A. Keller, “The nature of brain dysfunction in autism: Functional brain imaging studies,” Current Opinion in Neurology 23, no. 2 (April 2010); and Eric Courchesne et al., “Brain growth across the life span in autism: Age-specific changes in anatomical pathology,” Brain Research 1380 (March 2011).

250 Useful recent reviews of the state of the science in autism genetics include Judith Miles, “Autism spectrum disorders: A genetics review,” Genetics in Medicine 13, no. 4 (April 2011); and Daniel H. Geschwind, “Genetics of autism spectrum disorders,” Trends in Cognitive Sciences 15, no. 9 (September 2011).

250 Prenatal contributors to autism are discussed in Tara L. Arndt, Christopher J. Stodgell, and Patricia M. Rodier, “The teratology of autism,” International Journal of Developmental Neuroscience 23, nos. 2–3 (April–May 2005).

250 For more information on the association between paternal age and autism, see Abraham Reichenberg et al., “Advancing paternal age and autism,” Archives of General Psychiatry 63, no. 9 (September 2006); Rita M. Cantor et al., “Paternal age and autism are associated in a family-based sample,” Molecular Psychiatry 12 (2007); and Maureen S. Durkin et al., “Advanced parental age and the risk of autism spectrum disorder,” American Journal of Epidemiology 168, no. 11 (December 2008).

250 The possible contribution of genetic incompatibility to the development of autism is discussed in William G. Johnson et al., “Maternally acting alleles in autism and other neurodevelopmental disorders: The role of HLA-DR4 within the major histocompatibility complex,” in Maternal Influences on Fetal Neurodevelopment, edited by Andrew W. Zimmerman and Susan L. Connors (2010).

250 For more on assortative mating hypotheses, see Simon Baron-Cohen, “The hyper-systemizing, assortative mating theory of autism,” Progress in Neuropsychopharmacology & Biological Psychiatry 30, no. 5 (July 2006); and Steve Silberman, “The geek syndrome,” Wired, December 2001.

250 A new multicenter sibling study has identified mutations in 279 genes occurring only in the autistic subjects; see Stephen Sanders et al., “De novo mutations revealed by whole-exome sequencing are strongly associated with autism,” Nature 485, no. 7397 (May 10, 2012).

250 Influences on genetic expression are discussed in Isaac N. Pessah and Pamela J. Lein, “Evidence for environmental susceptibility in autism: What we need to know about gene x environment interactions,” in Autism: Current Theories and Evidence, edited by Andrew Zimmerman (2008).

250 Variable penetrance is the subject of Dan Levy, Michael Wigler et al., “Rare de novo and transmitted copy-number variation in autistic spectrum disorders,” Neuron 70, no. 5 (June 2011).

250 Figures on autism and genetic concordance in identical twins come from Anthony Bailey et al., “Autism as a strongly genetic disorder: Evidence from a British twin study,” Psychological Medicine 25 (1995).

251 Studies on the broad autism phenotype, i.e., the manifestation of autistic traits in immediate and extended family members of people with autism, include Nadia Micali et al., “The broad autism phenotype: Findings from an epidemiological survey,” Autism 8, no. 1 (March 2004); Joseph Piven et al., “Broader autism phenotype: Evidence from a family history study of multiple-incidence autism families,” American Journal of Psychiatry 154 (February 1997); and Molly Losh et al., “Neuropsychological profile of autism and the broad autism phenotype,” Archives of General Psychiatry 66, no. 5 (May 2009).

251 For scholarly discussion of the genome-wide incidence of autism-related genes, see Joseph T. Glessner et al., “Autism genome-wide copy number variation reveals ubiquitin and neuronal genes,” Nature 459 (May 28, 2009).

251 This 20 to 30 percent statistic reflects risk to the sibling over general population risk as established by the CDC. Accepting an autism prevalence that is constantly being recalculated but that is hovering at about one in a hundred, and a risk for siblings is about one in five, we come up with this comparative statistic; see Brett S. Abrahams and Daniel H. Geschwind, “Advances in autism genetics: On the threshold of a new neurobiology,” Nature Review Genetics 9, no. 5 (May 2008).

251 Interview with Matthew State, 2009.

251 Interview with Thomas Insel, 2010.

251 Interview with Michael Wigler and Jonathan Sebat, 2008.

252 More background on pleiotropism and autism can be found in Annemarie Ploeger et al., “The association between autism and errors in early embryogenesis: What is the causal mechanism?,” Biological Psychiatry 67, no. 7 (April 2010).

252 For a study linking genes associated with autism and co-morbid conditions, see Daniel B. Campbell et al., “Distinct genetic risk based on association of MET in families with co-occurring autism and gastrointestinal conditions,” Pediatrics 123, no. 3 (March 2009).

252 Sebat and Wigler’s report on their autism genetics research is Jonathan Sebat et al., “Strong association of de novo copy number mutations with autism,” Science 316, no. 5823 (April 20, 2007).

252 Jonathan Sebat’s study of the association between microdeletions and increased head circumference is described in the Simons Foundation press release “Relating copy-number variants to head and brain size in neuropsychiatric disorders,” at http://sfari.org/funding/grants/abstracts/relating-copy-number-variants-to-head-and-brain-size-in-neuropsychiatric-disorders.

253 The quotation from Daniel Geschwind comes from a personal interview in 2012. Geschwind’s recent papers on the genetics of autism include “Autism: Many genes, common pathways?,” Cell 135, no. 3 (October 31, 2008); and “The genetics of autistic spectrum disorders,” Trends in Cognitive Sciences 15, no. 9 (September 2011).

253 For studies of rapamycin’s effect on learning, memory deficits, and seizures in mice, see Dan Ehninger et al., “Reversal of learning deficits in a Tsc2+/- mouse model of tuberous sclerosis,” Nature Medicine 14, no. 8 (August 2008); and L.-H. Zeng et al., “Rapamycin prevents epilepsy in a mouse model of tuberous sclerosis complex,” Annals of Neurology 63, no. 4 (April 2008).

253 The quotation from Alcino Silva comes from a 2008 UCLA press release, “Drug reverses mental retardation in mice,” at http://www.newswise.com/articles/drug-reverses-mental-retardation-in-mice.

253 The role of mGluR receptors in autism is discussed in Mark F. Bear et al., “The mGluR theory of fragile X mental retardation,” Trends in Neurosciences 27, no. 7 (July 2004); and Randi Hagerman et al., “Fragile X and autism: Intertwined at the molecular level leading to targeted treatments,” Molecular Autism 1, no. 12 (September 2010). For a study finding amelioration of behavioral abnormalities in genetically engineered mice administered mGluR antagonists, see Zhengyu Cao et al., “Clustered burst firing in FMR1 premutation hippocampal neurons: Amelioration with allopregnanolone,” Human Molecular Genetics (published online ahead of print, April 6, 2012).

254 For a preliminary report of findings in a clinical trial of drug treatment for Rett syndrome, see Eugenia Ho et al., “Initial study of rh-IGF1 (Mecasermin [DNA] injection) for treatment of Rett syndrome and development of Rett-specific novel biomarkers of cortical and autonomic function (S28.005),” Neurology 78, meeting abstracts 1 (April 25, 2012).

254 For discussion of potential drug therapies for fragile X syndrome, see the recent review article by Randi Hagerman et al., “Fragile X syndrome and targeted treatment trials,” Results and Problems in Cell Differentiation 54 (2012), pages 297–335. Recruitment efforts are under way for a new fragile X study; see the press release “Clinical trials of three experimental new treatments for Fragile X are accepting participants,” FRAXA Research Foundation, March 22, 2012.

254 The quote by Geraldine Dawson comes from her presentation at the Alexandria Summit, “Translating Innovation into New Approaches for Neuroscience,” in 2012. Dawson is chief scientific officer for Autism Speaks.

254 For the study finding similar genetic mutations in fragile X and in autism, see Ivan Iossifov et al., “De novo gene disruptions in children on the autistic spectrum,” Neuron 74, no. 2 (April 2012); and Cold Spring Harbor Laboratory’s press release about the study, “A striking link is found between the Fragile-X gene and mutations that cause autism,” at http://www.cshl.edu/Article-Wigler/a-striking-link-is-found-between-the-fragile-x-gene-and-mutations-that-cause-autism.

254 Simon Baron-Cohen discusses his “empathizing/systemizing” hypothesis in “The extreme male brain theory of autism,” Trends in Cognitive Science 6, no. 6 (June 2002); “Autism: The empathizing-systemizing (E-S) theory,” Annals of the New York Academy of Sciences 1156 (March 2009); and “Empathizing, systemizing, and the extreme male brain theory of autism,” Progress in Brain Research 186 (2010).

255 The association of high levels of fetal testosterone and autistic traits is discussed in Bonnie Auyeung and Simon Baron-Cohen, “A role for fetal testosterone in human sex differences: Implications for understanding autism,” in Autism: Current Theories and Evidence, edited by Andrew Zimmerman (2008); and Bonnie Auyeung et al., “Foetal testosterone and autistic traits in 18 to 24-month-old children,” Molecular Autism 1, no. 11 (July 2010).

255 The study of savants is the lifework of Darold Treffert; for just two of his reports on the subject, see “The savant syndrome in autism,” in Autism: Clinical and Research Issues, edited by Pasquale J. Accardo et al. (2000); and “The savant syndrome: An extraordinary condition. A synopsis: Past, present, future,” Philosophical Transactions of the Royal Society, Part B 364, no. 1522 (May 2009). The perfect map of Rome was created by Stephen Wiltshire and is displayed on his website, http://www.stephenwiltshire.co.uk/Rome_Panorama_by_Stephen_Wiltshire.aspx.

255 Michael Rutter reported on the impact of institutionalization on Romanian orphans in Michael Rutter et al., “Are there biological programming effects for psychological development?: Findings from a study of Romanian adoptees,” Developmental Psychology 40, no. 1 (2004).

255 Bettelheim’s comparison of autistic children to concentration camp inmates occurs on pages 66–78 of The Empty Fortress (1972).

255 Margaret Bauman’s clinical experiences are discussed in Rachel Zimmerman, “Treating the body vs. the mind,” Wall Street Journal, February 15, 2005.

255 Statistics on the percentage of autistic individuals with comorbid diagnoses of depression and anxiety were provided by Lonnie Zwaigenbaum at a 2009 presentation at Cold Spring Harbor Laboratory.

Studies establishing a high frequency of comorbid psychiatric problems include Luke Tsai, “Comorbid psychiatric disorders of autistic disorder,” Journal of Autism & Developmental Disorders 26, no. 2 (April 1996); Christopher Gillberg and E. Billstedt, “Autism and Asperger syndrome: coexistence with other clinical disorders,” Acta Psychiatrica Scandinavica 102, no. 5 (November 2000); and Gagan Joshi et al., “The heavy burden of psychiatric comorbidity in youth with autism spectrum disorders: A large comparative study of a psychiatrically referred population,” Journal of Autism & Developmental Disorders 40, no. 11 (November 2010).

256 The quotation from Kamran Nazeer comes from pages 161–62 of Send in the Idiots: Stories from the Other Side of Autism (2006).

256 This passage is based on my interview with John Shestack and Portia Iversen in 2008. Iversen is author of Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism (2006). The Autism Genetic Resource Exchange website: http://www.familyagre.org.

257 The quotation from Daniel Geschwind comes from personal communication in 2011.

257 The quotation from Isabelle Rapin comes from a 2009 presentation at Cold Spring Harbor Laboratory.

257 Laura Schreibman discusses autism diagnostic instruments on page 68 of The Science and Fiction of Autism (2005).

257 I have taken the August Bier quotation from Victoria Costello, “Reaching children who live in a world of their own,” Psychology Today, December 9, 2009.

The original German is Eine gute Mutter diagnostiziert oft viel besser wie ein schlechter Arzt and may be found at http://dgrh.de/75jahredgrh0.html.

258 Interview with Kathleen Seidel in 2008. I note in the interest of full disclosure that I employed Kathleen Seidel to help me with research, citations, and the bibliography for this book starting in 2009.

258 This passage is based on my interview with Icilda Brown in 2005. All names in this passage are pseudonyms.

260 The Autism Society of America’s estimates of the incidence of autism come from their organizational website, http://www.autism-society.org/.

260 For recent studies on autism prevalence, see Gillian Baird et al., “Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special Needs and Autism Project (SNAP),” Lancet 368, no. 9531 (July 15, 2006); Michael D. Kogan et al., “Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US, 2007,” Pediatrics 124, no. 5 (2009); and Catherine Rice et al., “Changes in autism spectrum disorder prevalence in four areas of the United States,” Disability and Health Journal 3, no. 3 (July 2010).

260 Diagnostic substitution in California is the subject of Lisa A. Croen et al., “The changing prevalence of autism in California,” Journal of Autism and Developmental Disorders 32, no. 3 (June 2002); see also Marissa King and Peter Bearman, “Diagnostic change and the increased prevalence of autism,” International Journal of Epidemiology 38, no. 5 (October 2009).

260 Estimates of the lifetime cost of supporting individuals with autism come from Laura Ellen Schreibman, The Science and Fiction of Autism (2005), page 71; see also Michael Ganz, “The lifetime distribution of the incremental societal costs of autism,” Archives of Pediatric & Adolescent Medicine 161, no. 4 (April 2007).

261 The quotation from Steven Hyman comes from a personal communication in 2008.

261 See Marissa King and Peter Bearman, “Diagnostic change and the increased prevalence of autism,” International Journal of Epidemiology 38, no. 5 (October 2009); and Dorothy V. Bishop et al., “Autism and diagnostic substitution: Evidence from a study of adults with a history of developmental language disorder,” Developmental Medicine & Child Neurology 50, no. 5 (May 2008).

261 For information on regression in autism, see Sally J. Rogers, “Developmental regression in autism spectrum disorders,” Mental Retardation & Developmental Disabilities Research Reviews 10, no. 2 (2004); Janet Lainhart et al., “Autism, regression, and the broader autism phenotype,” American Journal of Medical Genetics 113, no. 3 (December 2002); and Jeremy R. Parr et al., “Early developmental regression in autism spectrum disorder: Evidence from an international multiplex sample,” Journal of Autism & Developmental Disorders 41, no. 3 (March 2011). For the idea that regression in autism may be the expression of an unfolding genetic process, see Gerry A. Stefanatos, “Regression in autistic spectrum disorders,” Neuropsychology Review 18 (December 2008).

261 Eric Fombonne presented this in a talk at UCLA in 2012. It represents work by Judith Miller that reclassified old files using modern diagnostic criteria. Miller showed that prevalence was previously underestimated (i.e., at that time, many children were excluded from studies—as not meeting diagnostic criteria—who would now be included). She will be the first author on a paper that summarizes this work, which is not yet published.

261 Andrew Wakefield first proposed an association between the MMR vaccine and autism in “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children,” Lancet 351 (1998).

261 Official figures on measles incidence and deaths in the UK following increasing rejection of the MMR vaccine can be found in the UK Health Protection Agency report “Measles notifications and deaths in England and Wales, 1940–2008” (2010).

261 Thomas Verstraeten et al., “Safety of thimerosal-containing vaccines: A two-phased study of computerized health maintenance organization databases,” Pediatrics 112, no. 5 (November 2003).

262 The Lancet’s apology for the 1998 paper by Andrew Wakefield was announced by editor in chief Richard Horton in “A statement by the editors of The Lancet,” Lancet 363, no. 9411 (March 2004). The final retraction occurred six years later, after the UK General Medical Council announced the results of its investigation; see Editors of the Lancet, “Retraction—Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children,” Lancet 375, no. 9713 (February 2010). The story was reported by David Derbyshire, “Lancet was wrong to publish MMR paper, says editor,” Telegraph, February 21, 2004; Cassandra Jardine, “GMC brands Dr Andrew Wakefield ‘dishonest, irresponsible and callous,’Telegraph, January 29, 2010; and David Rose, “Lancet journal retracts Andrew Wakefield MMR scare paper,” The Times, February 3, 2010.

262 For a brief overview of the history of vaccine causation theories of autism, see Stanley Plotkin, Jeffrey S. Gerber, and Paul A. Offit, “Vaccines and autism: A tale of shifting hypotheses,” Clinical Infectious Diseases 48, no. 4 (February 15, 2009).

262 The 20–50 percent regression estimate comes from Emily Werner and Geraldine Dawson, “Validation of the phenomenon of autistic regression using home videotapes,” Archives of General Psychiatry 62, no. 8 (August 2005).

262 David Kirby, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (2005).

263 The Wright family conflict was reported in Jane Gross and Stephanie Strom, “Autism debate strains a family and its charity,” New York Times, June 18, 2007.

263 Jenny McCarthy’s books include Louder Than Words: A Mother’s Journey in Healing Autism (2007) and Mother Warriors: A Nation of Parents Healing Autism Against All Odds (2008).

263 The Hannah Poling case is discussed in Paul A. Offit, “Vaccines and autism revisited: The Hannah Poling case,” New England Journal of Medicine 358, no. 20 (May 15, 2008).

263 The quotation from Lenny Schafer comes from a telephone interview with him in 2008.

264 For an example of papers promoting the hypothesis that autism is associated with environmental metals, see Mary Catherine DeSoto and Robert T. Hitlan, “Sorting out the spinning of autism: Heavy metals and the question of incidence,” Acta Neurobiologiae Experimentalis 70, no. 2 (2010). In contrast, recent research demonstrates the absence of any association of autism with genes that regulate heavy metals in the body: Sarah E. Owens et al., “Lack of association between autism and four heavy metal regulatory genes,” NeuroToxicology 32, no. 6 (December 2011).

264 See Yumiko Ikezuki et al., “Determination of bisphenol A concentrations in human biological fluids reveals significant early prenatal exposure,” Human Reproduction 17, no. 11 (November 2002).

264 The study of twins and environmental factors is Joachim Hallmayer et al., “Genetic heritability and shared environmental factors among twin pairs with autism,” Archives of General Psychiatry (?July 4, 2011).

264 The quotation from Neil Risch comes from Erin Allday, “UCSF, Stanford autism study shows surprises,” San Francisco Chronicle, July 5, 2011.

264 The quotation from Joseph Coyle comes from Laurie Tarkan, “New study implicates environmental factors in autism,” New York Times, July 4, 2011.

264 The study finding an increased incidence of autism in children of mothers who used SSRIs during pregnancy is Lisa A. Croen et al., “Antidepressant use during pregnancy and childhood autism spectrum disorders,” Archives of General Psychiatry 68, no. 11 (November 2011).

264 These results rely on complex models and specific assumptions that may not be met. Joachim Hallmayer’s data show a 22 percent rate of concordance among dizygotic twins, and slightly more than 60 percent for monozygotic twins; see Joachim Hallmayer et al., “Genetic heritability and shared environmental factors among twin pairs with autism,” Archives of General Psychiatry 68, no. 11 (November 2011). A simple and standard means of ascertaining heritability is Falconer’s formula, which is hb2 = 2(rmz–rdz), in which hb2 represents general heritability, rmz is monozygotic twin correlation, and rdz is dizygotic twin correlation. This would lead to a heritability estimate of about 70 percent, consistent with previous results. A recent very large study comparing siblings and half siblings supports a ratio of 60 percent or higher; see John N. Constantino et al., “Autism recurrence in half siblings: Strong support for genetic mechanisms of transmission in ASD,” Molecular Psychiatry, epub ahead of print (February 28, 2012).

264 This passage is based on my interview with Mark Blaxill in 2008.

265 Blaxill is coauthor of Amy S. Holmes, Mark F. Blaxill, and Boyd E. Haley, “Reduced levels of mercury in first baby haircuts of autistic children,” International Journal of Toxicology 22, no. 4 (July–August 2003); and Martha R. Herbert et al., “Autism and environmental genomics,” NeuroToxicology 27, no. 5 (September 2006).

266 The reports of the Yale study of the responses of autistic subjects to Who’s Afraid of Virginia Woolf? are in Ami Klin et al., “Visual fixation patterns during viewing of naturalistic social situations as predictors of social competence in individuals with autism,” Archives of General Psychiatry 59, no. 9 (September 2002); and Ami Klin et al., “Defining and quantifying the social phenotype in autism,” American Journal of Psychiatry 159 (June 2002). For extensions of that work to young children, see Katarzyna Chawarska et al., “Automatic attention cueing through eye movement in 2-year-old children with autism,” Child Development 74, no. 4 (July–August 2003); and Katarzyna Chawarska et al., “Limited attentional bias for faces in toddlers with autism spectrum disorders,” Archives of General Psychiatry 67, no. 2 (February 2010).

266 See page 5 of Catherine Lord and James McGee, Educating Children with Autism (2005), in which she explains, “A large body of research has demonstrated substantial progress in response to specific intervention techniques in relatively short periods of time (e.g., several months) in many specific areas, including social skills, language acquisition, nonverbal communication, and reductions in challenging behaviors. Longitudinal studies over longer periods of time have documented changes in IQ scores and in core deficits (e.g., joint attention), in some cases related to treatment, that are predictive of longer term outcomes. However, children’s outcomes are variable, with some children making substantial progress and others showing very slow gains. Although there is evidence that interventions lead to improvements, there does not appear to be a clear, direct relationship between any particular intervention and children’s progress. Thus, while substantial evidence exists that treatments can reach short-term goals in many areas, gaps remain in addressing larger questions of the relationships between particular techniques and specific changes.”

266 The quotation from Bryna Siegel occurs on page 3 of Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals (2003).

266 Early reports by Charles B. Ferster on his work in behavioral conditioning include “Positive reinforcement and behavioral deficits of autistic children,” Child Development 32 (1961); and “The development of performances in autistic children in an automatically controlled environment,” Journal of Chronic Diseases 13, no. 4 (April 1961). A notable quote from the first paper: “Mothers of autistic children often appear to have strong repertoires prepotent over the child. This may be at least a partial reason why mothers of autistic children are so often well-educated, verbal, and at least superficially adequate people.”

266 ABA is discussed at length in Laura Schreibman, The Science and Fiction of Autism (2005); and Michelle R. Sherer and Laura Schreibman, “Individual behavioral profiles and predictors of treatment effectiveness for children with autism,” Journal of Consulting & Clinical Psychology 73, no. 3 (June 2005).

266 For a recent, comprehensive literature review on behavioral interventions for autism spectrum conditions, see Maria B. Ospina et al., “Behavioural and developmental interventions for autism spectrum disorder: A clinical systematic review,” PLoS One 3, no. 11 (November 2008).

266 For more on Floortime, see Stanley I. Greenspan and Serena Weider, Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think (2006).

266 The AAP has concluded that the efficacy of AIT has not been established; see American Academy of Pediatrics Policy Committee on Children with Disabilities, “Auditory integration training and facilitated communication for autism,” AAP Policy Committee on Children with Disabilities 102, no. 2 (1998).

267 The Rapid Prompting Method is described in Portia Iversen, Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism (2006); and Tito Rajarshi Mukhopadhyay, The Mind Tree: A Miraculous Child Breaks the Silence of Autism (2003).

267 Scholarly papers on service animals include Olga Solomon, “What a dog can do: Children with autism and therapy dogs in social interaction,” Ethos 38, no. 1 (March 2010); and François Martin and Jennifer Farnum, “Animal-assisted therapy for children with pervasive developmental disorders,” Western Journal of Nursing Research 24, no. 6 (October 2002).

267 The first quote about Kaleb and Chewey comes from Amanda Robert, “School bars autistic child and his service dog, ” Illinois Times, July 23, 2009; the second is taken from the decision in Nichelle v. Villa Grove Community Unit School District No. 302, Board of Education 302 (Appellate Court of Illinois, Fourth District, decided August 4, 2010; full text at http://caselaw.findlaw.com/il-court-of-appeals/1537428.html). For more on the outcome of the lawsuit filed by the parents against the school district, see Patrick Yeagle, “Dog fight ends with hall pass,” Illinois Times, September 9, 2010.

267 For a popular work on the gluten- and casein-free diet, see Karyn Seroussi, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery (2000).

267 A recent Cochrane Review paper concluded, “There is no evidence of effect of SSRIs in children and emerging evidence of harm. There is limited evidence of the effectiveness of SSRIs in adults from small studies in which risk of bias is unclear”; see Katrina Williams et al., “Selective serotonin reuptake inhibitors (SSRIs) for autism spectrum disorders (ASD),” Evidence-Based Child Health: A Cochrane Review Journal 6, no. 4 (July 2011).

267 Statistics on the prevalence of seizure disorders in people with autism come from the National Institute of Neurological Disorders & Stroke’s “Autism Fact Sheet” (2011), at http://www.ninds.nih.gov/disorders/autism/detail_autism.htm.

267 Psychopharmacological treatments are discussed in Melissa L. McPheeters et al., “A systematic review of medical treatments for children with autism spectrum disorders,” Pediatrics 127, no. 5 (May 2011).

267 The passage from Kamran Nazeer occurs on page 28 of Send in the Idiots (2006).

267 This passage is based on my interview with Bruce Spade in 2007. All names in this passage are pseudonyms.

268 Hesley Village and College is described in Anjana Ahuja’s article “Care in the community,” Times, February 4, 2008.

269 The quotation from Anton Chekhov comes from page 30 of David Mamet’s translation of The Cherry Orchard (1987). From the original Russian: “???? ?????? ?????-?????? ??????? ???????????? ????? ????? ???????, ?? ??? ??????, ??? ??????? ??????????.” http://ilibrary.ru/text/472/p.1/index.html.

269 Barry Kaufman’s books include Son-Rise (1976) and Son-Rise: The Miracle Continues (1995). Although the Option Institute’s promotional materials cite anecdotal evidence of the Son-Rise Program’s effectiveness, and refer to research soon to be featured in peer-reviewed journals, rigorous evaluations of the program have yet to be published; see Jeremy Parr, “Clinical evidence: Autism,” Clinical Evidence Online 322 (?January 2010). A 2003 survey conducted in the UK found that “involvement led to more drawbacks than benefits for the families over time.” A 2006 follow-up concluded that “the programme is not always implemented as it is typically described in the literature,” which significantly complicates the task of evaluation; see Katie R. Williams and J. G. Wishart, “The Son-Rise Program intervention for autism: An investigation into family experiences,” Journal of Intellectual Disability Research 47, nos. 4–5 (May–June 2003); and Katie R. Williams, “The Son-Rise Program intervention for autism: Prerequisites for evaluation,” Autism 10, no. 1 (?January 2006). In March 2010, the UK Advertising Standards Authority ruled that an advertisement for an Option Institute lecture was misleading in that it implied that the Son-Rise Program could cure autism when, in fact, this has never been established; see “ASA adjudication on the Option Institute and Fellowship,” issued March 3, 2010, http://www.asa.org.uk/Asa-Action/Adjudications/2010/3/The-Option-Institute-and-Fellowship/TF_ADJ_48181.aspx. For the allegation that the child was never autistic at all, see Bryna Siegel, The World of the Autistic Child (1996), pages 330–31. Siegel writes, “I’ve run across a couple of the professionals who were among those alleged to have diagnosed the boy as autistic, and both remain uncertain that the boy actually was autistic before treatment.”

269 For more on Holding Therapy, see Jean Mercer, “Coercive restraint therapies: A dangerous alternative mental health intervention,” Medscape General Medicine 7, no. 3 (August 9, 2005).

270 Rupert Isaacson, The Horse Boy: A Father’s Quest to Heal His Son (2009).

270 The dangers of chelation are discussed in Saul Green, “Chelation therapy: Unproven claims and unsound theories,” Quackwatch, July 24, 2007.

270 Mercury causation hypotheses are discussed in Karin B. Nelson and Margaret L. Bauman, “Thimerosal and Autism?,” Pediatrics 111 Pokies, no. 3 (March 2003).

270 The death of an autistic boy during IV chelation is reported in Arla J. Baxter and Edward P. Krenzelok, “Pediatric fatality secondary to EDTA chelation,” Clinical Toxicology 46, no. 10 (December 2008).

270 For information about the “Lupron protocol” and state medical board disciplinary actions against its promoters, see Trine Tsouderos, “‘Miracle drug’ called junk science,” Chicago Tribune, May 21, 2009; Steve Mills and Patricia Callahan, “Md. autism doctor’s license suspended,” Baltimore Sun, May 4, 2011; Meredith Cohn, “Lupron therapy for autism at center of embattled doctor’s case,” Baltimore Sun, June 16, 2011; Maryland State Board of Physicians, Final Decision and Order in the matter of Mark R. Geier, M.D. (March 22, 2012), at http://www.mbp.state.md.us/BPQAPP/orders/d2425003.222.pdf; Statement of Charges under the Maryland Medical Practice Act in the Matter of David A. Geier (May 16, 2011), at http://www.mbp.state.md.us/BPQAPP/orders/GeierCharge05162011.pdf; and out-of-state suspension notices and orders on the websites of the Medical Board of California, State of Florida Department of Health, Medical Licensing Board of Indiana, Commonwealth Board of Kentucky, New Jersey State Board of Medical Examiners, State Medical Board of Ohio, Virginia Department of Health Professions, and the State of Washington Department of Health Medical Quality Assurance Commission.

270 Melissa L. McPheeters et al., “A systematic review of medical treatments for children with autism spectrum disorders,” Pediatrics 127, no. 5 (May 2011), discusses alternative as well as conventional treatments.

270 This passage is based on my interview with Amy Wolf in 2004 and subsequent communications. All names in this passage are pseudonyms.

272 The Musashino Higashi Gakuen School’s organizational website is at http://www.musashino-higashi.org, and the Boston Higashi School website is at http://www.bostonhigashi.org. For descriptions of the Higashi methodology, see the National Autistic Society’s FAQ “Daily life therapy: Higashi,” and Mike Collins and Richard Mills, “Common ground: Report on a visit by the National Autistic Society to the Boston Higashi School, 5th–9th November 1995,” and the Institute for Complementary Practices, “The Higashi method” (2004). Positive journalistic reports about the school include “Autism: A theory from Tokyo,” New York Times, October 7, 1986; Catherine Foster, “Refusing to accept limits: Japanese educator’s school helps autistic children,” Christian Science Monitor, October 9, 1987; Marjorie Wallace, “Hope for the shadow children,” London Times Sunday Magazine, March 13, 1988; and Nicole Veash, “Japanese ideas find favour in the west,” Independent, November 13, 1997. For coverage of accusations of abuse by school staff, see Muriel Cohen’s and Aaron Zitner’s 1989 and 1990 reports in the Boston Globe; the Dateline NBC report “For the love of Scott,” broadcast January 18, 2004; and Megan Tench and Sarah Schweitzer, “Teacher at Higashi school convicted of harming student,” Boston Globe, June 29, 2005. More details on the outcome of one lawsuit against the school can be found in “Verdicts and settlements: Family of autistic child alleges abuse at private school (Tedeman v. Boston Higashi School et al.),” Massachusetts Lawyers Weekly.

273 The study of enhanced abilities in autism is a special focus of Laurent Mottron and his research team at Hôpital Rivière-des-Prairies in Montréal. Reports of their work include M. J. Caron et al., “Cognitive mechanisms, specificity and neural underpinnings of visuospatial peaks in autism,” Brain 129, no. 7 (?July 2006); Laurent Mottron et al., “Enhanced perceptual functioning in autism: An update, and eight principles of autistic perception,” Journal of Autism & Developmental Disorders 36, no. 1 (?January 2006); Robert M. Joseph et al., “Why is visual search superior in autism spectrum disorder?,” Developmental Science 12, no. 6 (December 2009); and Fabienne Samson et al., “Enhanced visual functioning in autism: An ALE meta-analysis,” Human Brain Mapping (April 4, 2011).

273 This and subsequent quotations by Joyce Chung come from my interview with her in 2008 and subsequent communications.

273 Thorkil Sonne’s innovative business venture is described in David Bornstein, “For some with autism, jobs to match their talents,” New York Times, June 30, 2011.

273 The quotation from John Elder Robison on being a savant occurs on page 209 of Look Me in the Eye (2007).

273 This passage is based on my interviews with Temple Grandin in 2004 and 2008.

274 The following quotations in this passage from Eustacia Cutler come from A Thorn in My Pocket (2004), page 38 (“tantrums are hard to handle”); page 106 (“God says be fruitful and multiply”); page 151 (“Adolescence is hard enough for any child”); page 164 (“slowly, with no innate concept”); and page 219 (“despite her extraordinary accomplishments”).

274 The next quote (“You have to pull them out of the limbo”) is from personal communication with Eustacia Cutler in 2012.

276 The quotation from Jim Sinclair comes from his essay “Don’t mourn for us,” Our Voice 1, no. 3 (1993).

276 The quotation from Jim Sinclair likening the expression person with autism to person with maleness comes from his 1999 essay “Why I dislike ‘person-first’ language,” archived at http://web.archive.org/web/20030527100525/http://web.syr.edu/~jisincla/person_first.htm.

276 The quotation from Isabelle Rapin comes from a 2009 presentation at Cold Spring Harbor Laboratory.

276 The quotation from Alex Plank comes from my interview with him in 2008.

276 Quotations from Ari Ne’eman here and following are from my interview with him in 2008 and subsequent communications.

277 Ari Ne’eman’s December 7, 2007, memo to Autistic Self Advocacy Network members, “An urgent call to action: Tell NYU Child Study Center to abandon stereotypes against people with disabilities,” can be read in its entirety on the organization’s website, http://www.autisticadvocacy.org/modules/smartsection/print.php?itemid=21.

277 For news reports about the ransom notes protest, see Joanne Kaufman, “Campaign on childhood mental illness succeeds at being provocative,” New York Times, December 14, 2007; Shirley S. Wang, “NYU bows to critics and pulls ransom-note ads,” Wall Street Journal Health Blog, December 19, 2007; Robin Shulman, “Child study center cancels autism ads,” Washington Post, December 19, 2007; and Joanne Kaufman, “Ransom-note ads about children’s health are canceled,” New York Times, December 20, 2007. In 2010, a scholarly paper was published about the ransom notes scandal: Joseph F. Kras, “The ‘Ransom Notes’ affair: When the neurodiversity movement came of age,” Disability Studies Quarterly 30, no. 1 (January 2010).

278 Ne’eman’s appointment to the National Council on Disability was announced in the December 16, 2009, White House press release “President Obama Announces More Key Administration Posts.” The ensuing controversy is described in Amy Harmon, “Nominee to disability council is lightning rod for dispute on views of autism,” New York Times, March 28, 2010.

278 This and subsequent quotations from Judy Singer come from an interview I did with her in 2008.

278 The first published use of the term neurodiversity occurs in Harvey Blume, “Neurodiversity,” Atlantic, September 30, 1998. Judy Singer’s first published use of the term neurodiversity occurs in her essay “Why can’t you be normal for once in your life: From a ‘problem with no name’ to a new kind of disability,” in Disability Discourse, edited by M. Corker and S. French (1999).

278 The quotations by Camille Clark come from personal e-mail communications.

279 The quotation from Jim Sinclair (“The ways we relate are different”) comes from his essay “Don’t mourn for us,” Our Voice 1, no. 3 (1993).

279 The quotation from Gareth Nelson comes from Emine Saner, “It is not a disease, it is a way of life,” Guardian, August 6, 2007.

279 The quotation from Richard Grinker, author of Unstrange Minds: Remapping the World of Autism (2007), comes from my interview with him in 2008.

280 The “baby-eating” image was created by Adriana Gamondes and published as “Pass the Maalox: An AoA Thanksgiving nightmare,” Age of Autism, November 29, 2009 (removed from the blog, but archived at http://web.archive.org/web/20091202093726/http://www.ageofautism.com/2009/11/pass-the-maalox-an-aoa-thanksgiving-nightmare.html).

281 The quotation from Kit Weintraub (“The fact that my children have an abnormality of development”) comes from her 2007 essay, “A mother’s perspective,” published on the website of the Association for Science in Autism Treatment,http://www.asatonline.org/forum/articles/mother.htm.

281 The quotation from Jonathan Mitchell (“The neurodiverse reach a vulnerable audience”) comes from his 2007 essay “Neurodiversity: Just say no,” http://www.jonathans-stories.com/non-fiction/neurodiv.html.

282 Newsgroup posts characterizing ideological opponents in insulting terms come from the Evidence of Harm discussion group on Yahoo! and were quoted in Kathleen Seidel’s May 2005 letter “Evidence of venom: An open letter to David Kirby,” published at http://www.neurodiversity.com/evidence_of_venom.html.

282 The quotation from Sarah Spence comes from personal communication in 2011.

282 Simon Baron-Cohen’s statement that “autism is both a disability and a difference” occurs in Emine Saner, “It is not a disease, it is a way of life,” Guardian, August 6, 2007.

283 The passage from the autistics.org website appears in Amy Harmon, “How about not ‘curing’ us, some autistics are pleading,” New York Times, December 20, 2004.

283 In My Language, MOV video, directed by Amanda Baggs, privately produced, January 14, 2007, http://www.youtube.com/watch?v=JnylM1hI2jc.

283 The quotation from Jane Meyerding (“If people on the autistic spectrum all came out”) comes from her 1998 essay “Thoughts on finding myself differently brained,” published online at http://www.planetautism.com/jane/diff.html.

284 The quote by Richard Grinker (“When people pity me for my daughter, I don’t understand the sentiment”) occurs on page 35 of his book Unstrange Minds: Remapping the World of Autism (2007).

284 The quotation from Kate Movius (“Nothing has yielded a ‘eureka’ moment”) comes from her article “Autism: Opening the window,” Los Angeles, September 2010.

284 For speculation that various historic and literary figures might have been autistic, see Michael Fitzgerald, The Genesis of Artistic Creativity: Asperger’s Syndrome and the Arts (2005).

285 This passage is based on my interview with Bill, Jae, Chris, and Jessie Davis in 2003, and further interviews with Bill, as well as other communications. The Davis family is featured in Abigail Pogrebin’s article “Autism: ‘Don’t ignore my son!,’” Parents, December 2008. Bill Davis and Wendy Goldband Schunick are the authors of Breaking Autism’s Barriers: A Father’s Story (2001) and Dangerous Encounters: Avoiding Perilous Situations with Autism (2002).

285 Vincent Carbone’s method is described in Vincent J. Carbone and Emily J. Sweeney-Kerwin, “Increasing the vocal responses of children with autism and developmental disabilities using manual sign mand training and prompt delay,” Journal of Applied Behavior Analysis 43, no. 4 (Winter 2010).

289 The Jae Davis Parent Scholarship program is described in Justin Quinn, “Local parents get scholarships to attend conference on autism,” Lancaster Intelligencer-Journal, July 30, 2004; and “For mother and son, life lessons as death nears: Woman ravaged by cervical cancer prepares autistic son for her passing,” Lancaster Intelligencer-Journal, August 20, 2003; the Jae Davis Internship Program is mentioned in Maria Coole, “Report recommendations could put Pa. at forefront in autism services,” Lancaster Intelligencer-Journal, April 23, 2005. In September 2004, the Organization for Autism Research announced the establishment of the Jae Davis Memorial Award; see “OAR Seeks Nominations for Community Service Award in Honor of the Late Jae Davis,” at http://www.researchautism.org/news/pressreleases/PR090204.asp.

289 Oliver Sacks, An Anthropologist on Mars: Seven Paradoxical Tales (1995).

290 News reports on murders and attempted murders of autistic children and adults by their parents that are described in this section:

Charles-Antoine Blais: Peter Bronson, “For deep-end families, lack of hope can kill,” Cincinnati Enquirer, October 9, 2005.

Casey Albury: Kevin Norquay, “Autism: Coping with the impossible,” Waikato Times, July 17, 1998; Paul Chapman, “Mom who strangled autistic child tried to get her to jump off bridge,” Vancouver Sun, July 11, 1998; and “Murder accused at ‘end of her tether,’” Evening Post, July 14, 1998.

Pierre Pasquiou: “Suspended jail term for French mother who killed autistic son,” BBC Monitoring International Reports, March 2, 2001.

James Joseph Cummings: “Man gets five years in prison for killing autistic son,” Associated Press, 1999.

Daniel Leubner: “Syracuse: Woman who killed autistic son is freed,” New York Times, May 12, 2005.

Gabriel Britt: “Man pleads guilty to lesser charge,” Aiken Standard, August 7, 2003.

Johnny Churchi: Barbara Brown, “Mother begins trial for death of her son,” Hamilton Spectator, May 5, 2003; and Susan Clairmont, “‘Sending you to heaven’ said mom,” Hamilton Spectator, May 6, 2003.

Angelica Auriemma: Nancie L. Katz, “Guilty in autistic’s drowning,” New York Daily News, February 19, 2005. Sentencing information comes from the New York State Department of Corrections and Community Supervision.

Terrance Cottrell: Chris Ayres, “Death of a sacrificial lamb,” Times, August 29, 2003.

Jason Dawes: Lisa Miller, “He can’t forgive her for killing their son but says spare my wife from a jail cell,” Daily Telegraph, May 26, 2004.

Patrick Markcrow and Sarah Naylor: Peter Bronson, “For deep-end families, lack of hope can kill,” Cincinnati Enquirer, October 9, 2005.

Christopher DeGroot: Cammie McGovern, “Autism’s parent trap,” New York Times, June 5, 2006.

Jose Stable: Al Baker and Leslie Kaufman, “Autistic boy is slashed to death and his father is charged,” New York Times, November 23, 2006.

Brandon Williams: Cheryl Korman, “Judge: Autistic’s mom to serve 10 years for ‘torture of her vulnerable child,’” Tucson Citizen, September 19, 2008.

Jacob Grabe: Paul Shockley, “Grabe gets life in son’s murder,” Daily Sentinel, March 31, 2010.

Son of Zvia Lev: Michael Rotem, “Mother found guilty of killing her autistic son,” Jerusalem Post, February 22, 1991.

292 The quotation from the president of the Montreal Autism Society comes from Debra J. Saunders, “Children who deserve to die,” San Francisco Chronicle, September 23, 1997.

292 Laura Slatkin’s remark about “that hidden, dark thought” is quoted in Diane Guernsey, “Autism’s angels,” Town & Country, August 1, 2006.

292 The quotation from Cammie McGovern comes from her article “Autism’s parent trap,” New York Times, June 5, 2006.

292 The quotation from Joel Smith comes from the essay “Murder of autistics,” published on his weblog, This Way of Life, http://www.geocities.com/growingjoel/murder.html.

292 The quotation from Karen McCarron comes from the Associated Press reports “‘Autism left me hollow,’ says mother accused of murder,” Dispatch-Argus, June 6, 2007; and “Mom convicted in autistic girl’s death,” USA Today, January 17, 2008.

292 Karen McCarron’s friend is quoted in Phil Luciano, “Helping everyone but herself,” Peoria Journal Star, May 18, 2006.

292 The quotations from Mike McCarron, Katie’s grandfather, come from a discussion of Kristina Chew, “I don’t have a title for this post about Katherine McCarron’s mother,” Autism Vox, June 8, 2006, and an interview with journalist Phil Luciano, “This was not about autism,” Peoria Journal-Star, May 24, 2006.

293 Stephen Drake’s and Dave Reynolds’s remarks occur in Not Dead Yet’s June 22, 2006, press release, “Disability advocates call for restraint and responsibility in murder coverage.”

293 Heidi Shelton is quoted in Larry Welborn, “Mom who drugged son gets deal,” Orange County Register, May 4, 2003.

293 John Victor Cronin’s wife’s comment appears in Nick Henderson, “Attack on wife: Mental health system blamed,” Advertiser, October 13, 2006.

294 The quotation from Debra Whitson comes from the article “Woman charged with trying to kill son,” Milwaukee Journal Sentinel, May 14, 1998.

294 Statistics on the percentage of filicides attributed by their perpetrators to “altruism” come from Phillip J. Resnick, “Child murder by parents: A psychiatric review of filicide,” American Journal of Psychiatry 126, no. 3 (September 1969).

294 For a discussion of the impact of altruistic explanations for filicide, see Dick Sobsey, “Altruistic filicide: Bioethics or criminology?,” Health Ethics Today 12, no. 1 (Fall/November 2001).

294 Possible motivations for filicide are discussed on page 111 of John E. Douglas et al., Crime Classification Manual: A Standard System for Investigating and Classifying Violent Crimes (1992).

VI: Schizophrenia

296 Statistics on suicide risk in schizophrenia come from Maurizio Pompili et al., “Suicide risk in schizophrenia: Learning from the past to change the future,” Annals of General Psychiatry 6 (March 16, 2007). 

296 The quotation from the sister of a schizophrenic man comes from Carole Stone, “First person: Carole Stone on life with her schizophrenic brother,” Guardian, November 12, 2005.

297 This passage is based on an interview with Kitty and Pamela Watson in 2007 and on subsequent communications. All names in this passage are pseudonyms.

302 Useful general introductions to schizophrenia include Christopher Frith and Eve Johnstone, Schizophrenia: A Very Short Introduction (2003); Michael Foster Green, Schizophrenia Revealed: From Neurons to Social Interactions (2001); Rachel Miller and Susan E. Mason, Diagnosis: Schizophrenia (2002); E. Fuller Torrey, Surviving Schizophrenia (2006); and the NIH booklet Schizophrenia (2007).

302 The quotation from the schizophrenic woman describing her positive symptoms (“I could find no rest, for horrible images assailed me . . .”) occurs on page 37 of Marguerite Sechehaye, Autobiography of a Schizophrenic Girl: The True Story of “Renee” (1951).

302 The quotation from the patient describing negative symptoms of schizophrenia (“I am all the time losing . . .”) occurs on page 2 of Christopher Frith and Eve Johnstone, Schizophrenia: A Very Short Introduction (2003).

302 The quotation from Eric Kandel is from a personal communication in 2009.

302 The poem quoted is Emily Dickinson’s “I Felt a Cleaving in My Mind,” no. 937 in The Complete Poems of Emily Dickinson (1960).

303 For more information on childhood-onset schizophrenia, see Judith L Rapoport and Nitin Gogtay, “Childhood onset schizophrenia: Support for a progressive neurodevelopmental disorder,” International Journal of Developmental Neuroscience 29, no. 3 (May 2011); and Anna E. Ordoñez and Nitin Gogtay, “Phenomenology and neurobiology of childhood onset schizophrenia,” Current Psychiatry Reviews 2 (2006).

303 The life course of schizophrenia is described in greater detail in Elaine Walker et al., “Schizophrenia: Etiology and course,” Annual Review of Psychology 55 (February 2004). See also figure 1 in Jeffrey A. Lieberman et al., “Science and recovery in schizophrenia,” Psychiatric Services 59 (May 2008).

303 The contribution of hormones to the development of schizophrenia is discussed in Laura W. Harris et al., “Gene expression in the prefrontal cortex during adolescence: Implications for the onset of schizophrenia,” BMC Medical Genomics 2 (May 2009); and Elaine Walker et al., “Stress and the hypothalamic pituitary adrenal axis in the developmental course of schizophrenia,” Annual Review of Clinical Psychology 4 (January 2008).

303 For more information on white matter in schizophrenia, see G. Karoutzou et al., “The myelin-pathogenesis puzzle in schizophrenia: A literature review,” Molecular Psychiatry 13, no. 3 (March 2008); and Yaron Hakak et al., “Genome-wide expression analysis reveals dysregulation of myelination-related genes in chronic schizophrenia,” Proceedings of the National Academy of Sciences 98, no. 8 (April 2001).

303 The synaptic-pruning hypothesis was originally proposed in I. Feinberg, “Schizophrenia: Caused by a fault in programmed synaptic elimination during adolescence?,” Journal of Psychiatric Research 17, no. 4 (1983). For a recent review article on the subject, see Gábor Faludi and Károly Mirnics, “Synaptic changes in the brain of subjects with schizophrenia,” International Journal of Developmental Neuroscience 29, no. 3 (May 2011).

304 Statistics on response to antipsychotics over the short and long term come from Jeffrey A. Lieberman and T. Scott Stroup, “The NIMH-CATIE schizophrenia study: What did we learn?,” American Journal of Psychiatry 168, no. 8 (August 2011).

304 This passage is based on my interview with Connie and Steve Lieber in 2008 and subsequent communications.

304 Brain & Behavior Research Foundation (formerly NARSAD) website: http://bbrfoundation.org/.

304 Figures on grant-making come from the Brain & Behavior Research Foundation (formerly NARSAD), “Our history” (2011), http://bbrfoundation.org/about/our-history. As of 2012, the most recent NARSAD grant statistics were: total given, $275,947,302.20; total number of grantees, 3,117; total number of grants given, 4,061; total number of institutions, 426; total number of countries (other than the United States), 30.

304 Herbert Pardes made this remark at a NARSAD gala in 2010.

305 The Lieber Clinic website can be found at http://columbiapsychiatry.org/clinicalservices/lieber-clinic-cognitive-remediation.

305 Bleuler’s invention of the word schizophrenia is discussed in Paolo Fusar-Poli and Pierluigi Politi, “Paul Eugen Bleuler and the birth of schizophrenia (1908),” American Journal of Psychiatry, 165, no. 11 (2008).

305 Frederick Plum declared that “schizophrenia is the graveyard of neuropathologists” in his paper “Prospects for research on schizophrenia. 3. Neurophysiology: Neuropathological findings,” Neurosciences Research Program Bulletin 10, no. 4 (November 1972).

305 For more information on the genetics of schizophrenia, see Nancy C. Andreasen, Brave New Brain (2001); and Yunjung Kim et al., “Schizophrenia genetics: Where next?,” Schizophrenia Bulletin 37, no. 3 (May 2011).

305 The most comprehensive study of schizophrenia risk in relatives is the Roscommon (Ireland) Family Study; see Kenneth S. Kendler et al., “The Roscommon Family Study. I. Methods, diagnosis of probands, and risk of schizophrenia in relatives,” Archives of General Psychiatry 50, no. 7 (July 1993); and numerous subsequent reports published by Kendler and his colleagues from 1993 to 2001. For a review and synthesis of twin studies discussing the various sorts of environmental influences that might contribute to the differential development of schizophrenia in twins, see Patrick F. Sullivan, Kenneth S. Kendler, and Michael C. Neale, “Schizophrenia as a complex trait: Evidence from a meta-analysis of twin studies,” Archives of General Psychiatry 60, no. 12 (December 2003).

305 All quotations from Deborah Levy come from my interview with her in 2008 and subsequent communications.

306 Studies on dopamine function in schizophrenia include Anissa Abi-Dargham et al., “Increased baseline occupancy of D2 receptors by dopamine in schizophrenia,” Proceedings of the National Academy of Sciences 97, no. 14 (July 2000); and Philip Seeman et al., “Dopamine supersensitivity correlates with D2High states, implying many paths to psychosis,” Proceedings of the National Academy of Sciences 102, no. 9 (March 2005).

306 For more information on hippocampal function in schizophrenia, see Stephan Heckers, “Neuroimaging studies of the hippocampus in schizophrenia,” Hippocampus 11, no. 5 (2001); and J. Hall et al., “Hippocampal function in schizophrenia and bipolar disorder,” Psychological Medicine 40, no. 5 (May 2010).

306 Epigenetics of schizophrenia is explored in Karl-Erik Wahlberg et al., “Gene-environment interaction in vulnerability to schizophrenia,” American Journal of Psychiatry 154, no. 3 (March 1997); and Paul J. Harrison and D. R. Weinberger, “Schizophrenia genes, gene expression, and neuropathology: On the matter of their convergence,” Molecular Psychiatry 10, no. 1 (January 2005).

306 The question of parasites and schizophrenia, Jaroslav Flegr’s hypothesis that schizophrenia is exacerbated by toxoplasmosis, is described in Kathleen McAuliffe, “How your cat is making you crazy,” Atlantic, March 2012.

306 Copy number variations in schizophrenia are the focus of Daniel F. Levinson et al., “Copy number variants in schizophrenia: Confirmation of five previous findings and new evidence for 3q29 microdeletions and VIPR2 duplications,” American Journal of Psychiatry 168, no. 3 (March 2011); Jan O. Korbel et al., “The current excitement about copy-number variation: How it relates to gene duplication and protein families,” Current Opinion in Structural Biology 18, no. 3 (June 2008); and G. Kirov et al., “Support for the involvement of large copy number variants in the pathogenesis of schizophrenia,” Human Molecular Genetics 18, no. 8 (April 2009). The contribution of paternal age to schizophrenia is discussed in E. Fuller Torrey, “Paternal age as a risk factor for schizophrenia: How important is it?,” Schizophrenia Research 114, nos. 1–3 (October 2009); and Alan S. Brown, “The environment and susceptibility to schizophrenia,” Progress in Neurobiology 93, no. 1 (January 2011).

306 For more information on spontaneous mutations and schizophrenia, see Anna C. Need et al., “A genome-wide investigation of SNPs and CNVs in schizophrenia,” PLoS Genetics 5, no. 2 (February 2009); and Hreinn Stefansson et al., “Large recurrent microdeletions associated with schizophrenia,” Nature 455, no. 7210 (September 11, 2008).

306 John Krystal’s comments come from my interview with him in 2012.

306 The development of transgenic mice that display schizophrenia-associated traits was first described in Takatoshi Hikida et al., “Dominant-negative DISC1 transgenic mice display schizophrenia-associated phenotypes detected by measures translatable to humans,” Proceedings of the National Academy of Sciences of the United States of America 104, no. 36 (September 4, 2007); and Koko Ishizuka et al., “Evidence that many of the DISC1 isoforms in C57BL/6J mice are also expressed in 129S6/SvEv mice,” Molecular Psychiatry 12, no. 10 (October 2007). For a recent review article on transgenic mouse research, see P. Alexander Arguello and Joseph A. Gogos, “Cognition in mouse models of schizophrenia susceptibility genes,” Schizophrenia Bulletin 36, no. 2 (March 2010).

307 The quotation from Eric Kandel comes from a personal communication. For a review of work by Kandel and his colleagues, see Christoph Kellendonk, Eleanor H. Simpson, and Eric R. Kandel, “Modeling cognitive endophenotypes of schizophrenia in mice,” Trends in Neurosciences 32, no. 6 (June 2009).

307 Maryellen Walsh’s observation (“The history of schizophrenia is the history of blame”) occurs on page 154 of her book Schizophrenia: Straight Talk for Family and Friends (1985).

307 Frieda Fromm-Reichman introduced the concept of the “schizophrenogenic mother” in her paper “Notes on the development of treatment of schizophrenics by psychoanalytic psychotherapy,” Psychiatry 11, no. 3 (August 1948); this was followed by the proliferation of the term throughout the scientific literature, e.g., Loren R. Mosher, “Schizophrenogenic communication and family therapy,” Family Processes 8 (1969).

307 The source of the quotation characterizing the schizophrenic patient as an “unsuccessful mediator” between parents is Murray Bowen et al., “The role of the father in families with a schizophrenic patient,” American Journal of Psychiatry 115, no. 11 (May 1959).

307 See Gregory Bateson et al., “Toward a theory of schizophrenia,” Behavioral Science 1, no. 4 (1956).

307 Examples of parent-blaming in the literature of systems-oriented family therapy include Ruth Wilmanns Lidz and Theodore Lidz, “The family environment of schizophrenic patients,” American Journal of Psychiatry 106 (November 1949) (“The study of the histories of these patients impresses forcefully that one patient after another was subjected to a piling up of adverse intrafamilial forces that were major factors in moulding the misshapen personality, and which repeatedly interfered with the patients’ attempts at maturation in most discouraging fashion.”); Murray Bowen, Robert H. Dysinger, and Betty Basamania, “The role of the father in families with a schizophrenic patient,” American Journal of Psychiatry 115, no. 11 (May 1959) (“The fathers and mothers appear equally immature. The surface distance controls a deeper interdependence on each other. One parent denies the immaturity and functions with a facade of overadequacy. The other accentuates the immaturity and functions with a facade of inadequacy. The family members, particularly the father and mother, function in reciprocal relation to each other. They are separated from each other by an emotional barrier which, in some ways, has characteristics of an ‘emotional divorce.’ Either father or mother can have a close emotional relationship with the patient when the other parent permits. The patient’s function is similar to that of an unsuccessful mediator of the emotional differences between the parents. The most frequent family pattern is an intense twosome between mother and patient which excludes the father and from which he permits himself to be excluded.”); and Gregory Bateson et al., “Toward a theory of schizophrenia,” Behavioral Science 1, no. 4 (1956) (“We hypothesize that the family situation of the schizophrenic has the following general characteristics: 1. A child whose mother becomes anxious and withdraws if the child responds to her as a loving mother. That is, the child’s very existence has a special meaning to the mother which arouses her anxiety and hostility when she is in danger of intimate contact with the child. 2. A mother to whom feelings of anxiety and hostility toward the child are not acceptable, and whose way of denying them is to express overt loving behavior to persuade the child to respond to her as a loving mother and to withdraw from him if he does not. ‘Loving behavior’ does not necessarily imply ‘affection’; it can, for example, be set in a framework of doing the proper thing, instilling ‘goodness,’ and the like. 3. The absence of anyone in the family, such as a strong and insightful father, who can intervene in the relationship between the mother and child and support the child in the face of the contradictions involved.”).

It is also worth reviewing Alfred S. Friedman et al., Psychotherapy for the Whole Family (1965), page 1: “By focusing upon the family as the unit of illness, we hoped to demonstrate not only improved health of the family member primarily ascribed the sick role, the schizophrenic, but to make a contribution towards the improved mental health of the other family members through their active engagement in the treatment process.”

For an extended critique of parent-blame theories, see John G. Howells and Waguih R. Guirguis, The Family and Schizophrenia (1985).

308 The quotation from Thomas Insel (“blame and shame”) comes from a personal communication in 2010.

308 The NAMI finding that 57 percent of respondents believed that schizophrenia is caused by parental behavior is described on page 41 of Peter Wyden, Conquering Schizophrenia (1998).

308 In the pop-psychology bestseller The Secret (2006), Rhonda Byrne declares unequivocally, “Humans have the power to intentionally think and create their entire life with their mind.”

308 “The religion of healthy-mindedness” serves as the title of a chapter in William James, The Varieties of Religious Experience (1905). The quotation about “the conquering efficacy of courage, hope, and trust, and a correlative contempt for doubt, fear, worry” appears on page 95. The passage in full: “One of the doctrinal sources of Mind-cure is the four Gospels; another is Emersonianism or New England transcendentalism; another is Berkeleyan idealism; another is spiritism, with its messages of ‘law’ and ‘progress’ and ‘development’; another the optimistic popular science evolutionism of which I have recently spoken; and, finally, Hinduism has contributed a strain. But the most characteristic feature of the mind-cure movement is an inspiration much more direct. The leaders in this faith have had an intuitive belief in the all-saving power of healthy-minded attitudes as such, in the conquering efficacy of courage, hope, and trust, and a correlative contempt for doubt, fear, worry, and all nervously precautionary states of mind. Their belief has in a general way been corroborated by the practical experience of their disciples; and this experience forms to-day a mass imposing in amount.”

308 The quotation from Patricia Backlar (“I sometimes felt as though I wore a scarlet letter S . . .”) occurs on pages 15–16 of her book The Family Face of Schizophrenia (1994).

308 The quotation beginning “An entire generation of mental health professionals” occurs on pages 160–61 of Maryellen Walsh, Schizophrenia: Straight Talk for Family and Friends (1985).

308 The quotation from E. Fuller Torrey (“Any parent who has raised a child . . .”) occurs on page 152 of his book Surviving Schizophrenia (2006).

308 This passage is based on my interview with Paul and Freda Smithers in 2008. All names in this passage are pseudonyms.

309 The quotation from John Bunyan (“Let them . . . recover one to his wits that was mad . . .”) comes from “The Jerusalem sinner saved, or, good news for the vilest of men,” in The Miscellaneous Works of John Bunyan, edited by Richard L. Greaves and Robert Sharrock (1979).

309 For a layperson’s reference on the history of treatments for schizophrenia, see Robert Whitaker, Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill (2003). Henry Cotton’s theory of “focal infection” (for which tooth-pulling was supposedly a remedy) is described in Richard Noll, “The blood of the insane,” History of Psychiatry 17, no. 4 (December 2006). For more information on the history of lobotomy, see Joel T. Braslow, “History and evidence-based medicine: Lessons from the history of somatic treatments from the 1900s to the 1950s,” Mental Health Services Research 1, no. 4 (December 1999).

309 Thorazine is a trademark for chlorpromazine. For more information, see Thomas A. Ban, “Fifty years chlorpromazine: A historical perspective,” Neuropsychiatric Disease & Treatment 3, no. 4 (August 2007).

309 The quotation from Helen Mayberg (“It’s as though you have a house burning down . . .”) comes from personal communication in 2011.

310 The quotation from the Russian political prisoner (“One loses his individuality, his mind is dulled . . .”) comes from the samizdat publication Chronicle of Current Events 18 (March 5, 1971), translated from Russian and cited in John D. LaMothe, Controlled Offensive Behavior: USSR, Defense Intelligence Agency Report ST-CS-01-169-72 (1972). Soviet use of psychiatric medication was described in Carl Gershman, “Psychiatric abuse in the Soviet Union,” Society 21, no. 5 (July 1984).

310 The quotation from Janet Gotkin (“I became alienated from my self . . .”) occurs on page 17 of the Committee on the Judiciary report Drugs in Institutions (1977), which contains the transcript of hearings held on July 31 and August 18, 1975. Gotkin is also quoted on pages 176–77 of Paul Whitaker’s Mad in America (2003). With her husband, Paul Gotkin, she is author of Too Much Anger, Too Many Tears: A Personal Triumph Over Psychiatry (1992).

310 The quotation beginning “The muscles of your jawbone go berserk” occurs on pages 35–36 of Jack Henry Abbott, In the Belly of the Beast (1981).

310 This passage is based on interviews with Penny, Peter, Doug, and Polly Pease in 2008 and subsequent communications.

313 The McLean schizophrenia genetics study is ongoing; recruitment information is available on their website, http://www.mclean.harvard.edu/research/clinical/study.php?sid=68.

313 For more information on clozapine intoxication, see Carl R. Young, Malcolm B. Bowers Jr., and Carolyn M. Mazure, “Management of the adverse effects of clozapine,” Schizophrenia Bulletin 24, no. 3 (1998).

313 Foucault’s treatise on mental illness is Madness and Civilization: A History of Insanity in the Age of Reason (1964).

314 See, for example, Erving Goffman, “The insanity of place,” Psychiatry: Journal of Interpersonal Relations 32, no. 4 (November 1969).

314 The quotations from R. D. Laing occur on pages 115, 121, and 133 of The Politics of Experience (1967). From page 121: “There is no such ‘condition’ as ‘schizophrenia,’ but the label is a social fact and the social fact a political event.” From page 115: “The experience and behavior that gets labeled schizophrenic is a special strategy that a person invents in order to live in an unlivable situation.” From page 133: “Madness need not be all breakdown. It may also be break-through. It is potential liberation and renewal as well as enslavement and existential death.”

314 The seminal works of “antipsychiatry” include Erving Goffman’s and R. D. Laing’s works cited above, as well as Thomas Szasz’s books The Myth of Mental Illness (1974) and Insanity: The Idea and Its Consequences (1987).

314 Figures on the reduction in institutionalized populations come from page 421 of E. Fuller Torrey, Surviving Schizophrenia (2006).

314 E. Fuller Torrey’s statement “Freedom to be insane is an illusory freedom” occurs on page 34 of his book Nowhere to Go: The Tragic Odyssey of the Homeless Mentally Ill (1988).

314 Judge Berel Caesar is quoted on page 160 of Rael Jean Isaac and Virginia C. Armat, Madness in the Streets: How Psychiatry and the Law Abandoned the Mentally Ill (1990).

314 The quotations from Ann Braden Johnson (“the myth that mental illness is a myth” and “Bureaucrats who drew up programs . . .”) occur on pages 4 and xiv, respectively, of Out of Bedlam: The Truth About Deinstitutionalization (1990).

314 Nancy C. Andreasen describes the function of hospitals as communities on page 32 of The Family Face of Schizophrenia (1994).

315 The quotation from the frustrated father (“The authorities say it is their choice and their right to live like stray animals . . .”) occurs on page 11 of Rael Jean Isaac and Virginia C. Armat, Madness in the Streets (1990).

315 This passage is based on my interview with Madeline Grammont in 2008. All names in this passage are pseudonyms.

316 For a large-scale study of schizophrenia risk in twins, see Alastair G. Cardno et al., “Heritability estimates for psychotic disorders: The Maudsley twin psychosis series,” Archives of General Psychiatry 56, no. 2 (February 1999): 162–68.

316 For a review of enlarged lateral ventricles in schizophrenia, see Danilo Arnone et al., “Magnetic resonance imaging studies in bipolar disorder and schizophrenia,” British Journal of Psychiatry 195, no. 3 (September 2009).

316 The function of dendritic spines is described in detail in Anissa Abi-Dargham and Holly Moore, “Prefrontal DA transmission at D1 receptors and the pathology of schizophrenia,” Neuroscientist 9, no. 5 (2003).

316 Temporal lobe function in schizophrenia is discussed in Christos Pantelis et al., “Structural brain imaging evidence for multiple pathological processes at different stages of brain development in schizophrenia,” Schizophrenia Bulletin 31, no. 3 (July 2005).

316 For more information on synaptic connectivity and frontal lobe function in schizophrenia, see Gábor Faludi and Károly Mirnics, “Synaptic changes in the brain of subjects with schizophrenia,” International Journal of Developmental Neuroscience 29, no. 3 (May 2011); and Francine M. Benes, “Amygdalocortical circuitry in schizophrenia: From circuits to molecules,” Neuropsychopharmacology 35, no. 1 (January 2010). Synaptic connectivity in autism is discussed in Carlos A. Pardo and Charles G. Eberhart, “The neurobiology of autism,” Brain Pathology 17, no. 4 (October 2007).

316 For discussion of the contribution of maternal infection to schizophrenia, see Douglas Fox, “The insanity virus,” Discover, June 2010; and Alan S. Brown and Ezra S. Susser, “In utero infection and adult schizophrenia,” Mental Retardation & Developmental Disabilities Research Reviews 8, no. 1 (February 2002).

316 Studies documenting an increase in schizophrenia in offspring of women who experienced the death or life-threatening illness of a close relative during pregnancy include Ali S. Khashan et al., “Higher risk of offspring schizophrenia following antenatal maternal exposure to severe adverse life events,” Archives of General Psychiatry 65, no. 2 (2008); and Matti O. Huttunen and Pekka Niskanen, “Prenatal loss of father and psychiatric disorders,” Archives of General Psychiatry 35, no. 4 (1978). Unforeseen mental health consequences of war are documented in Jim van Os and Jean-Paul Selten, “Prenatal exposure to maternal stress and subsequent schizophrenia: The May 1940 invasion of the Netherlands,” British Journal of Psychiatry 172, no. 4 (April 1998); and Dolores Malaspina et al., “Acute maternal stress in pregnancy and schizophrenia in offspring: A cohort prospective study,” BMC Psychiatry 8 (2008). Schizophrenia following famine is discussed in Hans W. Hoek, Alan S. Brown, and Ezra S. Susser, “The Dutch famine and schizophrenia spectrum disorders,” Social Psychiatry & Psychiatric Epidemiology 33, no. 8 (July 1998); and David St. Clair et al., “Rates of adult schizophrenia following prenatal exposure to the Chinese famine of 1959–1961,” Journal of the American Medical Association 294, no. 5 (2005).

316 Prenatal stress hormones and dopamine activation in schizophrenia are explored in Alan S. Brown, “The environment and susceptibility to schizophrenia,” Progress in Neurobiology 93, no. 1 (January 2011); and Dennis K. Kinney et al., “Prenatal stress and risk for autism,” Neuroscience & Biobehavioral Reviews 32, no. 8 (October 2008).

316 For a recent study finding an increased risk of schizophrenia following traumatic brain injury, see Charlene Molloy et al., “Is traumatic brain injury a risk factor for schizophrenia?: A meta-analysis of case-controlled population-based studies,” Schizophrenia Bulletin (August 2011).

316 Meta-analyses of studies on increased risk of schizophrenia in immigrant populations include Elizabeth Cantor-Graae and Jean-Paul Selten, “Schizophrenia and migration: A meta-analysis and review,” American Journal of Psychiatry 162, no. 1 (January 2005); and Jean-Paul Selten, Elizabeth Cantor-Graae, and Rene S. Kahn, “Migration and schizophrenia,” Current Opinion in Psychiatry 20, no. 2 (March 2007).

316 For studies establishing an association between severity of schizophrenic symptoms and recreational use of cocaine, methamphetamine, and cannabis, see, e.g., Killian A. Welch et al., “The impact of substance use on brain structure in people at high risk of developing schizophrenia,” Schizophrenia Bulletin 37, no. 5 (September 2011); and P. A. Ringen et al., “The level of illicit drug use is related to symptoms and premorbid functioning in severe mental illness,” Acta Psychiatrica Scandinavica 118, no. 4 (October 2008).

316 Methamphetamine use and psychosis in postwar Japan are discussed in Hiroshi Suwaki, Susumi Fukui, and Kyohei Konuma, “Methamphetamine abuse in Japan,” in Methamphetamine Abuse: Epidemiologic Issues and Implications, edited by Marissa J. Miller and Nicholas J. Kozel (1991); and Mitsumoto Sato, Yohtaro Numachi, and Takashi Hamamura, “Relapse of paranoid psychotic state in methamphetamine model of schizophrenia,” Schizophrenia Bulletin 18, no. 1 (1992).

317 For the Swedish cannabis/schizophrenia study, see Stanley Zammit et al., “Self reported cannabis use as a risk factor for schizophrenia in Swedish conscripts of 1969: Historical cohort study,British Medical Journal 325, no. 7374 (November 23, 2002).

317 The quotation from Cyril D’Souza comes from my interview with him in 2007. One of his recent articles that addresses this topic is R. Andrew Sewell, Mohini Ranganathan, and Deepak Cyril D’Souza, “Cannabinoids and psychosis,” International Review of Psychosis 21, no. 2 (April 2009).

317 Dysregulation of neural transmitters is described in Paul J. Harrison and D. R. Weinberger, “Schizophrenia genes, gene expression, and neuropathology: On the matter of their convergence,” Molecular Psychiatry 10, no. 1 (January 2005).

317 Studies and review articles by Anissa Abi-Dargham and her colleagues include Anissa Abi-Dargham et al., “Increased baseline occupancy of D2 receptors by dopamine in schizophrenia,” Proceedings of the National Academy of Sciences 97, no. 14 (July 2000); Anissa Abi-Dargham and Holly Moore, “Prefrontal DA transmission at D1 receptors and the pathology of schizophrenia,” Neuroscientist 9, no. 5 (October 2003); Bernard Masri et al., “Antagonism of dopamine D2 receptor/beta-arrestin 2 interaction is a common property of clinically effective antipsychotics,” Proceedings of the National Academy of Sciences 105, no. 36 (September 9, 2008); Nobumi Miyake et al., “Presynaptic dopamine in schizophrenia,” CNS Neuroscience & Therapeutics 17, no. 2 (April 2011); and Robert W. Buchanan et al., “Recent advances in the development of novel pharmacological agents for the treatment of cognitive impairments in schizophrenia,” Schizophrenia Bulletin 33, no. 5 (2007).

317 Elyn Saks credits talk therapy with saving her life in The Center Cannot Hold: My Journey Through Madness (2007). Cognitive behavioral therapy for schizophrenia is discussed in Xavier Amador, I Am Not Sick, I Don’t Need Help (2007); Jennifer Gottlieb and Corinne Cather, “Cognitive behavioral therapy (CBT) for schizophrenia: An in-depth interview with experts,” Schizophrenia.com (February 3, 2007); Debbie M. Warman and Aaron T. Beck, “Cognitive behavioral therapy,” National Alliance on Mental Illness (2003); Susan R. McGurk et al., “A meta-analysis of cognitive remediation in schizophrenia,” American Journal of Psychiatry 164, no. 12 (2007); and Sara Tai and Douglas Turkington, “The evolution of cognitive behavior therapy for schizophrenia: Current practice and recent developments,” Schizophrenia Bulletin 35, no. 5 (2009).

318 The quotation from Jeffrey Lieberman (“There is no better time in the history of mankind to have a mental illness than now . . .”) comes from my interview with him in 2008.

318 International Early Psychosis Association website: http://www.iepa.org.au.

318 Thomas McGlashan discusses the potential benefits of early treatment in an article written with Scott Woods, “Early antecedents and detection of schizophrenia: Understanding the clinical implications,” Psychiatric Times 28, no. 3 (March 2011).

318 Jeffrey Lieberman’s comment about the “Humpty-Dumpty situation” comes from the article “A beacon of hope: Prospects for preventing and recovering from mental illness,” NARSAD Research Quarterly 2, no. 1 (Winter 2009).

318 The quotation from Jack Barchas comes from a personal communication in 2010.

318 Early symptoms of schizophrenia are described in Nancy C. Andreasen, “Schizophrenia: The characteristic symptoms,” Schizophrenia Bulletin 17, no. 1 (1991); and Tandy J. Miller et al., “The PRIME North America randomized double-blind clinical trial of olanzapine versus placebo in patients at risk of being prodromally symptomatic for psychosis II: Baseline characteristics of the ‘prodromal’ sample,” Schizophrenia Research 61, no. 1 (March 2003).

318 Thomas McGlashan and his colleagues reported their findings in Thomas H. McGlashan et al., “Randomized, double-blind trial of olanzapine versus placebo in patients prodromally symptomatic for psychosis,” American Journal of Psychiatry 163, no. 5 (May 2006); and Keith A. Hawkins et al., “Neuropsychological course in the prodrome and first episode of psychosis: Findings from the PRIME North America double blind treatment study,” Schizophrenia Research 105, nos. 1–3 (October 2008). McGlashan’s assessment of the results as only “marginally significant” comes from Benedict Carey, “Mixed result in drug trial on pretreating schizophrenia,” New York Times, May 1, 2006.

319 Studies from the UK and Australia finding benefit in cognitive-behavioral therapy include Patrick D. McGorry et al., “Randomized controlled trial of interventions designed to reduce the risk of progression to first-episode psychosis in a clinical sample with subthreshold symptoms,” Archives of General Psychiatry 59, no. 10 (October 2002); Mike Startup, M. C. Jackson, and S. Bendix, “North Wales randomized controlled trial of cognitive behaviour therapy for acute schizophrenia spectrum disorders: Outcomes at 6 and 12 months,” Psychological Medicine 34, no. 3 (April 2004); Mike Startup et al., “North Wales randomized controlled trial of cognitive behaviour therapy for acute schizophrenia spectrum disorders: Two-year follow-up and economic evaluation,” Psychological Medicine 35, no. 9 (2005); P. Kingsep et al., “Cognitive behavioural group treatment for social anxiety in schizophrenia,” Schizophrenia Research 63, nos. 1–2 (September 2003); and Andrew Gumley et al., “Early intervention for relapse in schizophrenia: Results of a 12-month randomized controlled trial of cognitive behavioural therapy,” Psychological Medicine 33, no. 3 (April 2003).

319 For more information on prevention of psychosis by omega-3 fatty acids, see K. Akter et al., “A review of the possible role of the essential fatty acids and fish oils in the aetiology, prevention or pharmacotherapy of schizophrenia,” Journal of Clinical Pharmacy & Therapeutics (April 19, 2011); Claire B. Irving et al., “Polyunsaturated fatty acid supplementation for schizophrenia: Intervention review,” Cochrane Library 9 (January 20, 2010); and Max Marshall and John Rathbone, “Early intervention in psychosis,” Cochrane Library 15, no. 6 (June 2011).

319 The quotation from Thomas McGlashan comes from my interview with him in 2007.

319 The concept of a “psychosis risk syndrome” was first developed by Thomas McGlashan and incorporated into the design of the PRIME study: Keith A. Hawkins et al., “Neuropsychological course in the prodrome and first episode of psychosis: Findings from the PRIME North America double blind treatment study,” Schizophrenia Research 105, nos. 1–3 (October 2008). McGlashan and his colleagues argue for the establishment of the syndrome as a diagnostic category in Scott W. Woods et al., “The case for including Attenuated Psychotic Symptoms Syndrome in DSM-5 as a psychosis risk syndrome,” Schizophrenia Research 123, nos. 2–3 (November 2010). Their proposals attracted considerable opposition; see, e.g., Cheryl M. Corcoran, Michael B. First, and Barbara Cornblat, “The psychosis risk syndrome and its proposed inclusion in the DSM-V: A risk-benefit analysis,” Schizophrenia Research 120 (July 2010); and Allen Frances, “Psychosis risk syndrome: Far too risky,” Australian & New Zealand Journal of Psychiatry 45, no. 10 (October 2011). For a scholarly review of the controversy, see Barnaby Nelson and Alison R. Yung, “Should a risk syndrome for first episode psychosis be included in the DSM-5?,” Current Opinion in Psychiatry 24, no. 2 (March 2011); for a journalistic discussion, see Sally Satel, “Prescriptions for psychiatric trouble and the DSM-V,” Wall Street Journal, February 19, 2010. A report of the decision of the DSM working committee finally to drop the diagnosis is presented in Benedict Carey, “Psychiatry manual drafters back down on diagnoses,” New York Times, May 8, 2012.

319 The quotation from John Krystal (“What they do in the DSM is a fashion question . . .”) comes from a personal communication in 2012.

319 The anecdote from Jeffrey Lieberman about an anonymous patient comes from my interview with him in 2007.

320 This passage is based on my interviews with George Clark, Charlotte Clark, Electa Reischer, and Jackie Clark in 2008 and subsequent communications.

324 The quotation from Deborah Levy comes from my interview with her in 2008.

324 The quotation from Larry Davidson and David Stayner (“While perhaps appearing wooden and vacant to others . . .”) comes from their paper “Loss, loneliness, and the desire for love: Perspectives on the social lives of people with schizophrenia,” Psychiatric Rehabilitation Journal 20, no. 3 (Winter 1997).

325 The quotation from Jean Frazier comes from my interview with her in 2008.

325 The quotation from the unnamed mother whose son’s therapist proposed a motto is from a personal communication, 2008.

325 This passage is based on my interviews with George, Giuseppe, and Bridget Marcolo in 2008 and subsequent communications. All names in this passage are pseudonyms.

327 For more information on recovery and the recovery movement, see Robert Paul Liberman et al., “Operational criteria and factors related to recovery from schizophrenia,” International Review of Psychiatry 14, no. 4 (November 2002); Jeffrey A. Lieberman et al., “Science and recovery in schizophrenia,” Psychiatric Services 59 (May 2008); and Kate Mulligan, “Recovery movement gains influence in mental health programs,” Psychiatric News 38, no. 1 (January 2003).

328 The quotation from the unnamed mother (“Two years ago, I would have thought he was living a sad, wasted, pointless life . . .”) comes from a personal interview in 2009.

328 This passage is based on my interview with Marnie Callahan in 2008. All names in this passage are pseudonyms.

328 The quotation from Jeffrey Lieberman (“The problem is . . .”) comes from my interview with him in 2011.

329 Statistics on homelessness among people with schizophrenia occur on page 3 of E. Fuller Torrey, Out of the Shadows: Confronting America’s Mental Illness Crisis (1997).

329 See the US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Results from the 2008 National Survey on Drug Use and Health: National Findings (2008).

329 The quotation from Jean Frazier (“The thing that makes me emotionally drained . . .”) comes from my interview with her in 2008.

329 Estimates of costs associated with schizophrenia come from Eric Q. Wu et al., “The economic burden of schizophrenia in the United States in 2002,” Journal of Clinical Psychiatry 66, no. 9 (September 2005).

329 Elevated rates of suicide in schizophrenia are reported in Kahyee Hor and Mark Taylor, “Suicide and schizophrenia: A systematic review of rates and risk factors,” Journal of Psychopharmacology 24, no. 4 suppl. (November 2010); and Alec Roy and Maurizio Pompili, “Management of schizophrenia with suicide risk,” Psychiatric Clinics of North America 32, no. 4 (December 2009). See also Maurizio Pompili et al., “Suicide risk in schizophrenia: Learning from the past to change the future,” Annals of General Psychiatry 6 (March 16, 2007). From page 863: “Attempts at suicide are also common among schizophrenics. For example, the National Institute of Mental Health (NIMH) Longitudinal Study of Chronic Schizophrenia found that, over a mean of 6 years, 38% of the patients made at least one suicide attempt and 57% admitted to substantial suicidal ideation.” See also Maurizio Pompili et al., “Suicide risk in schizophrenia: Learning from the past to change the future,” Annals of General Psychiatry 6, no. 10 (2007). From page 2: “Suicide attempts, which often result in death from suicide at a later time, are common among patients with schizophrenia; about 20–40% of these patients do make suicide attempts.”

329 The anecdote about the feces-eating prisoner who remained uncommitted following a petition to the court occurs on page 142 of E. Fuller Torrey, Out of the Shadows (1997).

329 The quotation from Kenneth Duckworth (“It’s harder to get into a state hospital than into Harvard Medical School”) comes from Deborah Sontag, “A schizophrenic, a slain worker, troubling questions,” New York Times, June 17, 2011.

330 Figures for the percentage of individuals with schizophrenia who live with their families rely on Richard S. E. Keefe and Philip D. Harvey, Understanding Schizophrenia: A Guide to New Research on Causes and Treatment (1994) (estimating 65 percent, page 173); Agnes B. Hatfield, Family Education in Mental Illness (1990) (estimating 65 percent, page 15; the family survey finding that only 3 percent of responders thought their schizophrenic relatives should live in the family home is discussed on pages 16–17); and Ellen Lukens, “Schizophrenia,” in Handbook of Social Work Practice with Vulnerable and Resilient Populations, 2nd ed., edited by Alex Gitterman (2001) (estimating 50–70 percent, page 288). For more information on living arrangements and parent satisfaction, see Benedicte Lowyck et al., “Can we identify the factors influencing the burden family-members of schizophrenic patients experience?,” International Journal of Psychiatry in Clinical Practice 5, no. 2 (?January 2001).

330 The quotation from Jeffrey Lieberman (“The problem is that people burn out . . .”) comes from my interview with him in 2009.

330 The quotation from Ezra Susser (“You have to be really careful . . .”) comes from my interview with him in 2008.

330 The referenced WHO study is Dan Chisholm et al., “Schizophrenia treatment in the developing world: An interregional and multinational cost-effectiveness analysis,” Bulletin of the World Health Organization 86, no. 8 (July 2008). A 1999 study from Nigeria disputes the claim that schizophrenia outcomes are better in developing countries; see Oye Gureje and Rotimi Bamidele, “Thirteen-year social outcome among Nigerian outpatients with schizophrenia,” Social Psychiatry & Psychiatric Epidemiology 34, no. 3 (March 1999).

330 The quotation from Cyril D’Souza (“It was very difficult for me to understand . . .”) comes from my interview with him in 2007.

330 The description of treatment of mental patients in Senegal is based on personal reporting I did there in 2000.

331 The quotation from Esso Leete (“Criticize only constructively . . .”) comes from her article “Interpersonal environment: A consumer’s personal recollection,” in Surviving Mental Illness: Stress, Coping, and Adaptation, edited by Agnes B. Hatfield and Harriet P. Lefley (1993).

331 The advice to “approach delusions in a spirit of shared inquiry” is made at East Community’s “Family and friends” webpage, http://www.eastcommunity.org/home/ec1/smartlist_12/family_and_friends.html.

331 The quotation from the father (“My loving, bright, amusing son . . .”) occurs on page 34 of Raquel E. Gur and Ann Braden Johnson, If Your Adolescent Has Schizophrenia: An Essential Resource for Parents (2006); the quotation from the mother (“These kids die but they never get buried”) occurs on page 93.

331 The quotation “The sick child inhabits a different world . . .” occurs on page 3 of Nona Dearth and Families of the Mentally Ill Collective, Families Helping Families: Living with Schizophrenia (1986).

331 The murder of Malcolm Tate is described on page 79 of E. Fuller Torrey, Out of the Shadows: Confronting America’s Mental Illness Crisis (1997). A judgment in Lothell Tate v. State of South Carolina, affirming Lothell Tate’s conviction for the murder of her brother, was issued by the South Carolina Supreme Court on April 13, 1992.

331 This passage is based on my interview with Rosemary Baglio in 2008.

333 Prolixin is an antipsychotic medication that works by blocking dopamine.

334 Anosognosia is the subject of Xavier Francisco Amador, I Am Not Sick, I Don’t Need Help! (2007).

334 “That proves you mad, because you know it not” occurs in act 4, scene 3 of Thomas Dekker’s 1604 play, The Honest Whore, reissued by Nick Hern Books in 1998.

334 The quotation from Elyn Saks (“We should not be in the business of choosing selves”) occurs on page 12 of her book Refusing Care: Forced Treatment and the Rights of the Mentally Ill (2002).

335 For more information on IQ and outcomes in schizophrenia, see Janet C. Munro et al., “IQ in childhood psychiatric attendees predicts outcome of later schizophrenia at 21 year follow-up,” Acta Psychiatrica Scandinavica 106, no. 2 (August 2002); and Maurizio Pompili et al., “Suicide risk in schizophrenia: Learning from the past to change the future,” Annals of General Psychiatry 6, no. 10 (2007).

335 The quotation from John Krystal (“You have no idea how many people you interact with who are hearing voices . . .”) comes from my interview with him in 2012.

335 Linda Bishop is the subject of Rachel Aviv, “God knows where I am: What should happen when patients reject their diagnosis?,” New Yorker, May 30, 2011.

335 Judi Chamberlin’s comment (“If it isn’t voluntary, it isn’t treatment”) occurs in David Davis, “Losing the mind,” Los Angeles Times, October 26, 2003. Chamberlin is the author of On Our Own: Patient-Controlled Alternatives to the Mental Health System (1978).

335 The Mad Pride movement is discussed in Gabrielle Glaser, “‘Mad pride’ fights a stigma,” New York Times, May 11, 2008.

336 The quotation from the Asheville Radical Mental Health Collective organizer (“It used to be you were labeled . . .”) comes from Gabrielle Glaser, “‘Mad pride’ fights a stigma,” New York Times, May 11, 2008.

336 The quotation from David Oaks (“They took a wrecking ball to the cathedral of my mind”), Sally Zinman’s praise of Oaks, and the American Psychiatric Association’s response come from David Davis, “Losing the mind,” Los Angeles Times, October 26, 2003.

336 Peter Breggin describes drug-induced improvement in schizophrenics as a “disability, a loss of mental capacity” on page 2 of Psychiatric Drugs: Hazards to the Brain (1983).

337 Psychiatric drug “pro-choice” advocates are featured in I. A. Robinson and Astrid Rodrigues, “‘Mad Pride’ activists say they’re unique, not sick,” ABC News, August 2, 2009.

337 The quotation from Will Hall occurs on page 3 of his book Harm Reduction Guide to Coming Off Psychiatric Drugs (2007).

337 This quotation from Clare Allan (“There seems to be some sort of agreement . . .”) and the one that follows (“Rightly or wrongly, the truth was I didn’t feel proud . . .”) come from her article “Misplaced pride,” Guardian, September 27, 2006; “According to my doctor, I’m mad . . .” appears in the comments section of that article.

337 The statement “We are a network of people living with . . .” occurs on the Icarus Project website, http://theicarusproject.net/.

338 Alison Jost discusses Mad Pride in her article “Mad pride and the medical model,” Hastings Center Report 39, no. 4 (July–August 2009).

338 This passage is based on my interview with Walter Forrest in 2008. All names in this passage are pseudonyms.

339 The anecdote about the casting difficulties involved in the production of One Flew Over the Cuckoo’s Nest occurs on page 38 of Otto F. Wahl, Media Madness: Public Images of Mental Illness (1995).

339 The survey finding that 40 percent of landlords immediately rejected mentally ill applicants for apartments is reported in Joseph M. Alisky and Kenneth A. Iczkowski, “Barriers to housing for deinstitutionalized psychiatric patients,” Hospital & Community Psychiatry 41, no. 1 (January 1990).

339 For details on the miserable employment prospects of people with schizophrenia, see Eric Q. Wu et al., “The economic burden of schizophrenia in the United States in 2002,” Journal of Clinical Psychiatry 66, no. 9 (September 2005); and David S. Salkever et al., “Measures and predictors of community-based employment and earnings of persons with schizophrenia in a multisite study,” Psychiatric Services 58, no. 3 (March 2007).

339 The effectiveness of employment as therapy was noted by Stephen Marder in Mark Moran, “Schizophrenia treatment should focus on recovery, not just symptoms,” Psychiatric News 39, no. 22 (November 19, 2004). Marder is a coauthor of Robert S. Kern et al., “Psychosocial treatments to promote functional recovery in schizophrenia,” Schizophrenia Bulletin 35, no. 2 (March 2009).

339 The quotation from James Beck (“Many people can’t tolerate working with chronic schizophrenics . . .”) occurs on page 97 of Rael Jean Isaac and Virginia C. Armat, Madness in the Streets (1990).

340 Statistics on risk of homicide by people with schizophrenia come from Cameron Wallace et al., “Serious criminal offending and mental disorder: Case linkage study,” British Journal of Psychiatry 172, no. 6 (June 1998).

340 For the 1998 study on violence in psychiatric patients, see Henry J. Steadman et al., “Violence by people discharged from acute psychiatric inpatient facilities and by others in the same neighborhoods,” Archives of General Psychiatry 55, no. 5 (May 1998).

340 Increased risk of violence to family members of people with schizophrenia is documented in Annika Nordström and Gunnar Kullgren, “Victim relations and victim gender in violent crimes committed by offenders with schizophrenia,” Social Psychiatry & Psychiatric Epidemiology 38, no. 6 (June 2003); and Annika Nordström, Lars Dahlgren, and Gunnar Kullgren, “Victim relations and factors triggering homicides committed by offenders with schizophrenia,” Journal of Forensic Psychiatry & Psychology 17, no. 2 (June 2006).

340 The murder of Stephanie Moulton by Deshawn Chappell is discussed in Deborah Sontag, “A schizophrenic, a slain worker, troubling questions,” New York Times, June 17, 2011; and John Oldham’s letter to the editor in response to “How budget cuts affect the mentally ill,” New York Times, June 25, 2011.

341 Quotations that appear in this account of Jared Loughner’s shooting spree and the aftermath come from the following sources: “We have a mentally unstable person in the class . . .”: Matthew Lysiak and Lukas I. Alpert, “Gabrielle Giffords shooting: Frightening, twisted shrine in Arizona killer Jared Lee Loughner’s yard,” New York Daily News, January 10, 2011. “It seemed obvious that he had mental problems” and “We don’t understand why this happened”: Leslie Eaton, Daniel Gilbert, and Ann Zimmerman, “Suspect’s downward spiral,” Wall Street Journal, January 13, 2011. Loughner “rocked back and forth,” “experienced delusions, bizarre thoughts . . .”: Mark Lacey, “After being removed from court, Loughner is ruled incompetent,” New York Times, May 25, 2011. “Mr. Loughner has a due process right . . .”: Mark Lacey, “Lawyers for defendant in Giffords shooting seem to be searching for illness,” New York Times, August 16, 2011. “Is it ethical and proper . . .”: Mark Lacey, “After being removed from court, Loughner is ruled incompetent,” New York Times, May 25, 2011.

341 Judicial authorization for continued medication for Jared Loughner is reported in “Judge allows forced medication for Arizona shooting suspect,” New York Times, August 28, 2011.

341 Loughner’s guilty plea was reported in Fernanda Santos, “Life term for gunman after guilty plea in Tucson killings,” New York Times, August 7, 2012.

342 The Los Angeles County Jail is described as the facility containing the largest number of schizophrenics in the United States in the article “Treatment not jail: A plan to rebuild community mental health,” Sacramento Bee, March 17, 1999. For a comprehensive general source on mental health and the criminal justice system, see the Council of State Governments report Criminal Justice / Mental Health Consensus Project (2002).

342 Statistics on the total number of people with schizophrenia in jail and on probation come from Paula Ditton, Mental Health and Treatment of Inmates and Probationers (1999).

342 Massachusetts statistics come from the most comprehensive available study of mental illness in incarcerated persons: Sasha Abramsky and Jamie Fellner, Ill-Equipped: U.S. Prisons and Offenders with Mental Illness (2003).

342 This passage is based on my interviews with Susan Weinreich and Bobbe Evans in 2007 and subsequent communications. Weinreich and her work have been profiled in Deanna Franklin’s article “The art of Susan Weinreich,” Clinical Psychiatry News 32, no. 8 (August 2004); and Kate Stone Lombardi’s “For an artist, life reborn after a battle with psychosis,” New York Times, June 8, 2003. Weinreich maintains a personal website at http://www.susanweinreich.com/.

343 Four Winds Hospitals website: http://www.fourwindshospital.com.

346 The four quotations about voices and delusions come from personal communications.

347 The quotation from Michael Foster Green (“When an illness is viewed as inexplicable and impenetrable . . .”) occurs on the first page of his book Schizophrenia Revealed (2001).

347 Karl Jaspers uses the phrase abyss of difference on page 219 of General Psychopathology (1963), as cited by Christopher Frith and Eve Johnstone on page 123 of Schizophrenia: A Very Short Introduction (2003).

347 The quotation from Jay Neugeboren (“For paid professionals to act as if Robert were merely a vessel of flesh . . .”) occurs on pages 136–39 of his book about Robert’s schizophrenia, Imagining Robert: My Brother, Madness, and Survival (2003). It has been condensed. In full, “For paid professionals, then, to act as if Robert were merely a vessel of flesh in which (bad) chemicals somehow rose up once upon a time and made him ill, and in which other (good) chemicals must now be poured deprives Robert, to put it most simply, of what he still possesses in abundance: his humanity. Whether or not we can ever know (or would want to know) of all the curious, sad, miraculous, bewildering, unpredictable, and mysterious ways in which the body does or does not interact with the mind, how not cry out against any and all attempts, when it comes to human beings with lives like Robert’s, to reduce their humanity to their biology? When dealing with a condition that arises from, affects, and shows itself forth in behavior, feeling, choice, and action—that brings joy, sorrow, grief, and tragedies that, daily and long-term, are distinctly human—how not pay attention and listen to the stories of these lives from those who have led them, however confusingly and crazily they are told, when it is by this very telling that some essential part of the human beings in possession of these lives is expressing itself and doing so, often, as a means of survival? Is it the very mystery of what we call madness that seems to cause us, again and again, to condemn those afflicted with this condition to some nonhuman category of life?”

347 Andy Behrman describes his experiences with bipolar disorder in his essay “Mental health recovery: A personal perspective,” About.com, December 29, 2011.

348 The quotation from Richard C. Friedman (“The problem in psychiatric diagnosis . . .”) comes from personal communication in 2011.

348 This passage is based on my interview with Patricia, Winston, and Sam Fischer in 2008, and subsequent communications. All names in this passage are pseudonyms, except the name of David Nathan.

350 Gould Farm website: http://www.gouldfarm.org/.

 

VII: Disability

355 Elaine Fowler Palencia, Taking the Train: Poems (1997), pages 6–7.

356 My definitions of various disability categories come from the National Dissemination Center for Children with Disabilities’ FAQ “Severe and/or multiple disabilities,” http://www.nichcy.org/Disabilities/Specific/Pages/SevereandorMultipleDisabilities.aspx.

357 “Loving things for reasons” is a line in Richard Wilbur’s poem “Winter Spring,” which appears on page 453 of his Collected Poems, 1943–2004 (2004).

Winter Spring

 

A script of trees before the hill

Spells cold, with laden serifs; all the walls

Are battlemented still;

But winter spring is winnowing the air

Of chill, and crawls

Wet-sparkling on the gutters;

Everywhere

Walls wince, and there’s the steal of waters.

 

Now all this proud royaume

Is Veniced. Through the drift’s mined dome

One sees the rowdy rusted grass,

And we’re amazed as windows stricken bright.

This too-soon spring will pass

Perhaps tonight,

And doubtless it is dangerous to love

This somersault of seasons;

But I am weary of

The winter way of loving things for reasons.

357 For basic information on severe disabilities, I have relied upon Introduction to Persons with Severe Disabilities: Educational and Social Issues, edited by John J. J. McDonnell et al. (1995); the twenty thousand births per year figure occurs on page 75.

357 This passage is based on my interviews with David and Sara Hadden in 2004 and 2007 and subsequent communications. David Hadden is a member of the Connecticut Council on Developmental Services.

360 Hartford Association for Retarded Citizens website: http://www.harc-ct.org/.

361 For contemporary news reports about Sam Hadden’s death and the prosecution of his caregiver, see Lizbeth Hall, “Nurse’s aide faces arrest,” Hartford Courant, December 15, 2000; and Tina A. Brown, “Group home worker sentenced,” Hartford Courant, January 5, 2002.

363 Quotations from Alan O. Ross come from pages 55–56 and 157 of his book The Exceptional Child in the Family (1972). From page 156: “During the period of pregnancy the parents, and particularly the mother, develop an expectation of what the child will be like. The image of the expected baby is an amalgam of perceptions of the self and of significant persons in the parent’s past, such as mother, father, spouse, siblings and previous children. Included in these expectations is the cultural stereotype of the ‘ideal child,’ the child with all the attributes of perfection which will enable him to compete successfully and to assume the roles society assigns to him and his parents’ fantasy for him. While values differ depending on the parents’ social class status, their expectations invariably include that the child will be ale to surpass, or at least attain, the parents’ level of socio-cultural accomplishment. Because of the mother’s more immediate biological role in gestation, she has a greater narcissistic investment in these expectations than does the father so that any discrepancy between the expectations and the reality presented by the child, when born, will usually have greater psychological meaning to her.”

From page 157: “Child-rearing behavior of parents is largely based on expectations derived form their image of the ‘normal’ or average child, because this is the model most widely encountered and the condition the parents themselves passed through during their childhood. When the child does not conform to this image the parents often need help in adapting their behavior to the reality—they must learn to cope with the dissonance between their image of ‘a child’ and the reality of ‘their child.’ Where the parents themselves have exceptionally high intellectual endowment this dissonance and the potential problem is reduced to such parents may in fact have a greater problem if they have a child who is ‘only’ of average intelligence.”

363 The quotation from Susan Allport (“It is not parent providing care to helpless young . . .”) occurs on page 103 of her book A Natural History of Parenting: A Naturalist Looks at Parenting in the Animal World and Ours (1997).

363 Sarah Hrdy’s observation (“Nurturing has to be teased out, reinforced, maintained . . .”) occurs on page 174 of her book Mother Nature: Maternal Instincts and How They Shape the Human Species (1999).

364 The characterization of maternal attachment as “transactional, rather than linear and unidirectional” comes from Carol George and Judith Solomon, “Attachment and caregiving: The caregiving behavioral system,” in Handbook of Attachment: Theory, Research, and Clinical Applications, edited by Jude Cassidy and Phillip R. Shaver (1999), page 659.

364 Carrie Knoll tells the story of her encounter with parents of a child with holoprosencephaly in her article “In parents’ eyes, the faintest signs of hope blur the inevitable,” Los Angeles Times, October 28, 2002.

364 This passage is based on my interview with Louis and Greta Winthrop in 2005. All names in this passage are pseudonyms.

365 Sophia Isako Wong’s question (“. . . what rewards do parents expect . . .”) comes from her article “At home with Down syndrome and gender,” Hypatia 17, no. 3 (Summer 2002).

365 See Simon Olshansky, “Chronic sorrow: A response to having a mentally defective child,” Social Casework 43, no. 4 (1962).

365 Sigmund Freud, Mourning and Melancholia, vol. 14, The Standard Edition of the Complete Psychological Works of Sigmund Freud (1955). From page 243: “The distinguishing mental features of melancholia are a profoundly painful dejection, cessation of interest in the outside world, loss of the capacity to love, inhibition of all activity, and a lowering of the self-regarding feelings to a degree that finds utterance in self-reproaches and self-revilings, and culminates in a delusional expectation of punishment. This picture becomes a little more intelligible when we consider that, with one exception, the same traits are met with in mourning. The disturbance of self-regard is absent in mourning; but otherwise the features are the same. Profound mourning, the reaction to the loss of someone who is loved, contains the same painful frame of mind, the same loss of interest in the outside world—in so far as it does not recall him—the same loss of capacity to adopt any new object of love (which would mean replacing him) and the same turning away from any activity that is not connected with thoughts of him. It is easy to see that this inhibition and circumscription of the ego is the expression of an exclusive devotion to mourning which leaves nothing over for other purposes or other interests. It is really only because we know so well how to explain it that this attitude does not seem to us pathological.”

366 The reference to “. . . the deadly pall of tragedy . . .” occurs on page 27 of Jeanne Ann Summers, Shirley K. Behr, and Ann P. Turnbull, “Positive adaptation and coping strengths of families who have children with disabilities,” in Support for Caregiving Families: Enabling Positive Adaptation to Disability, edited by George H. S. Singer and Larry K. Irvin (1989).

366 Discrepancies between professionals’ observations of family stress and family members’ actual experience are discussed in Anne E. Kazak and Robert S. Marvin, “Differences, difficulties and adaptation: Stress and social networks in families with a handicapped child,” Family Relations 33, no. 1 (January 1984).

366 Jerome Groopman’s comment about language (“Language is as vital to the physician’s art as the stethoscope . . .”) occurs in his article “Hurting all over,” New Yorker, November 13, 2000.

366 This passage is based on my interview with Paul and Cris Donovan in 2007 and subsequent communications.

367 For more background on CHARGE syndrome, see Kim D. Blake and Chitra Prasad’s paper, “CHARGE syndrome,” Orphanet Journal of Rare Diseases 1 (September 7, 2006).

371 For research finding that social isolation is a risk factor for depression and attachment impairment, see pages 93–95 of Infants in Crisis: How Parents Cope with Newborn Intensive Care and Its Aftermath, edited by Glenn Affleck, Howard Tennen, and Jonelle Rowe (1991); see also Glenn Affleck and Howard Tennen, “Appraisal and coping predictors of mother and child outcomes after newborn intensive care,” Journal of Social & Clinical Psychology 10, no. 4 (1991).

371 The concept of an “internal locus of control” is discussed in Bryony Beresford, “Resources and strategies: How parents cope with the care of a disabled child,” Journal of Child Psychology & Psychiatry 35, no. 1 (January 1994); and Emmy Werner and Ruth Smith, Journeys from Childhood to Midlife: Risk, Resilience, and Recovery (2001).

372 This passage is based on my interview with Susanna Singer in 2006 and subsequent communications.

372 Information on Dandy-Walker syndrome and Joubert syndrome can be found on the website of the National Institute of Neurological Disorders and Stroke, http://www.ninds.nih.gov; in Stephen Greenspan’s chapter, “Dandy-Walker syndrome,” in Health-Related Disorders in Children and Adolescents, edited by LeAdelle Phelps (1998), pages 219–23; and in Francesco Brancati, Bruno Dallapiccola, and Enza Valente’s paper, “Joubert syndrome and related disorders,” Orphanet Journal of Rare Diseases 5 (July 8, 2010).

373 Hebrew Academy for Special Children website: http://www.hasc.net/.

374 Cecilia Bartoli’s website: http://www.ceciliabartolionline.com.

376 The statistic on the percentage of disabled children who live with parents into adulthood occurs on page 460 of The Parental Experience in Midlife, edited by Carol Ryff and Marsha Mailick Seltzer (1996).

376 The modern increase in the life expectancy of disabled people is discussed on page 85 of Mental Retardation in the Year 2000, edited by Louis Rowitz (1992); see also Richard K. Eyman et al., “Survival of profoundly disabled people with severe mental retardation,” American Journal of Diseases of Childhood 147, no. 3 (1993). From the abstract: “Survival estimates for individuals who were immobile and could not roll over were short regardless of arm-hand use or feeding status, as were estimates for people who were tube fed. For individuals who could roll over, but were otherwise immobile, survival was relatively improved.”

376 The role of parental caregiving in providing companionship and a sense of purpose is discussed in Tamar Heller, Alison B. Miller, and Alan Factor, “Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal,” Mental Retardation 35, no. 5 (October 1997).

376 This passage is based on my interview with Bill Zirinsky and Ruth Schekter in 2005, and on Bill’s articles “Sam’s story,” Exceptional Parent, June 1997; “Saying goodbye to our cherished boy, Sam Zirinsky,” Crazy Wisdom Community Journal, May–August 2004; “Life with my two little girls,” Crazy Wisdom Community Journal, January–April 2006; and “If you could see her through my eyes: A journey of love and dying in the fall of 2007,” Crazy Wisdom Community Journal, January–April 2008.

380 References cited in the paragraph about sibling adjustment: Finding siblings more responsible and tolerant: Sally L. Burton and A. Lee Parks, “Self-esteem, locus of control, and career aspirations of college-age siblings of individuals with disabilities,” Social Work Research 18, no. 3 (September 1994). Finding siblings more unhappy, but not suffering unduly from psychiatric problems: Naomi Breslau et al., “Siblings of disabled children: Effects of chronic stress in the family,” Archives of General Psychiatry 44, no. 12 (December 1987). Finding the worse the disability, the better the sibling adjustment: Frances Kaplan Grossman, Brothers and Sisters of Retarded Children: An Exploratory Study (1972), especially pages 177–78. Finding siblings were helped by a specific diagnosis: Ann Gath and Dianne Gumley, “Retarded children and their siblings,” Journal of Child Psychology & Psychiatry 28, no. 5 (September 1987).

381 Allen Shawn describes his experience as the fraternal twin of a profoundly disabled sister in Twin: A Memoir (2010).

381 This passage is based on my interviews with John, Eve, and Dylan Morris in 2007 and subsequent communications.

385 The discussion of the Ashley treatment and ensuing controversy is based on my telephone interview with Ashley’s father in 2008 and subsequent communications; The “Ashley Treatment” weblog established by Ashley’s parents at http://ashleytreatment.spaces.live.com, which is the source of all quotations from Ashley’s father’s writings; Chris Ayres and Chris Lackner, “Father defends decision to stunt disabled girl’s growth,” Ottawa Citizen, January 4, 2007; Elizabeth Cohen’s report for CNN “Disability community decries ‘Ashley treatment,’” broadcast January 12, 2007; Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007; Ed Pilkington, “Frozen in time: The disabled nine-year-old girl who will remain a child all her life,” Guardian, January 4, 2007; Geneviève Roberts, “Brain-damaged girl is frozen in time by parents to keep her alive,” Independent, January 4, 2007; Sam Howe Verhovek, “Parents defend decision to keep disabled girl small,” Los Angeles Times, ?January 3, 2007; the CNN feature “‘Pillow angel’ parents answer CNN’s questions,” broadcast March 12, 2008; and the BBC report “Treatment keeps girl child-sized,” broadcast January 4, 2007.

385 From Nancy J. Hitzfelder’s FAQ for Easter Seals, “Static encephalopathy: A basic explanation for parents” (1999), defines static encephalopathy: “’Static’ means permanent or unchanging. The brain abnormality in SE is permanent or unchanging in the sense that it does not get worse. It is not progressive or degenerative. Unfortunately, it usually does not get better or improve much, either. This does not mean that the child will not get better. Many do. But most children with static encephalopathy will always have some degree of learning or developmental problems because they always have some degree of abnormal brain function.”

387 The quotation from Douglas Diekema comes from the CNN report “Ethicist in Ashley case answers questions,” broadcast January 11, 2007.

387 The quotations from Daniel Gunther come from the CNN report “Ethicist in Ashley case answers questions,” broadcast January 11, 2007; and from Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.

387 For the clinical report of the Ashley treatment, see Daniel F. Gunther and Douglas S. Diekema, “Attenuating growth in children with profound developmental disability: A new approach to an old dilemma,” Archives of Pediatric & Adolescent Medicine 260, no. 10 (October 2006).

387 The quotation from Arthur Caplan comes from his January 5, 2007, opinion piece for MSNBC, “Is ‘Peter Pan’ treatment a moral choice?

387 The reference to “surgical mutilation” occurs in a response to the article “The Ashley treatment,” on Burkhart’s Blog, January 6, 2007; “They might as well kill her” occurs in the article “The mistreatment of Ashley X,” Family Voyage, January 4, 2007.

388 FRIDA’s statement was published in a press release on January 10, 2007, http://fridanow.blogspot.com/2007/01/for-immediate-release-january-10-2007.html. In full: “People with disabilities and families nationwide have reacted with outrage to the drastic medical ‘solution’ to what is actually a complex social problem of finding real supports for people with disabilities and their families. FRIDA is also not surprised that the initial recipient of the ‘Ashley Treatment’ was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization.”

388 Helen Henderson deplored the advent of “designer cripples” in her op-ed piece “Earthly injustice of ‘pillow angels,’Toronto Star, June 27, 2009.

388 Julia Epstein’s characterization of the Ashley treatment as “terminally infantilizing” occurs in Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.

388 The two statements by mothers of severely disabled children come from Elizabeth Cohen’s report for CNN “Disability community decries ‘Ashley treatment,’” broadcast January 12, 2007 (quoting Penny Richards, “Sigh,” Temple University Disability Studies Weblog, January 5, 2007; and article by “Nufsaid,” “The world has gone completely nuts,” Ramblings, January 4, 2007).

388 The Seattle Growth Attenuation and Ethics Working Group statement comes from Benjamin S. Wilfond et al., “Navigating growth attenuation in children with profound disabilities: Children’s interests, family decision-making, and community concerns,” Hastings Center Report 40, no. 6 (November–December 2010).

389 Norman Fost characterizes public concern about the “Ashley treatment” as intrusive in his article “Offense to third parties?,” whereas Eva Feder Kittay characterizes the procedure as discriminatory in “Discrimination against children with cognitive impairments?”; both were published in Hastings Center Report 40, no. 6 (November–December 2010).

389 The MSNBC survey was described in the CNN report “‘Pillow angel’ parents answer CNN’s questions,” broadcast March 12, 2008.

389 The quotation from Daniel Gunther (“The argument that a beneficial treatment should not be used . . .”) occurs in Nancy Gibbs, “Pillow angel ethics,” Time, January 7, 2007.

389 The quotation from Peter Singer (“What matters in Ashley’s life . . .”) occurs in his op-ed piece “A convenient truth,” New York Times, January 26, 2007.

390 I here draw from William Shakespeare’s Sonnet 116

Let me not to the marriage of true minds

Admit impediments; love is not love

Which alters when it alteration finds,

Or bends with the remover to remove.

O no, it is an ever-fixed mark,

That looks on tempests and is never shaken;

It is the star to every wand’ring bark,

Whose worth’s unknown, although his height be taken.

Love’s not Time’s fool, though rosy lips and cheeks

Within his bending sickle’s compass come;

Love alters not with his brief hours and weeks,

But bears it out even to the edge of doom.

If this be error and upon me proved,

I never writ, nor no man ever loved.

390 The quotations from Anne McDonald come from her article “The other story from a ‘pillow angel’: Been there. Done that. Preferred to grow,” Seattle Post-Intelligencer, June 15 2007.

391 The quotation about the uncertainties of prognosis for communication in three-year-olds comes from a letter by Miriam A. Kalichman published online as “Replies to growth-attenuation therapy: Principles for practice,” Pediatrics (June 18, 2009). 

391 The quotation from Alice Domurat Dreger comes from her article “Attenuated thoughts,” Hastings Center Report 40, no. 6 (November–December 2010).

392 The quotation from Norman Kunc (“From the age of three until the age of twelve . . .”) comes from his interview with Michael F. Giangreco, “The stairs don’t go anywhere! A disabled person’s reflections on specialized services and their impact on people with disabilities,” University of Vermont, September 7, 1996, http://www.normemma.com/articles/arstairs.htm.

393 Examples of references to genocide in the literature of disability include Paddy Ladd and Mary John, “Deaf people as a minority group: The political process,” in the 1992 Open University syllabus Constructing Deafness: Social Construction of Deafness: Deaf People as a Minority Group—the Political Process (“A major piece of recent legislation was the 1981 Education Act, which enforced the idea of mainstreaming. The policy of ‘integration’ was seen by Deaf people within the movement as a policy of assimilation: ‘This legislation thus endorsed the genocide of the deaf community by breaking up its roots. So-called integration has become Oralism’s Final Solution’ (NUD, circa 1982).”); Harlan Lane, “Ethnicity, ethics and the deaf-world,” Journal of Deaf Studies & Deaf Education 10, no. 3 (Summer 2005) (“A third argument against the disability label for the Deaf-World concerns the risk to the Deaf-World as a whole if that representation prevails. A majority of people in the Deaf-World have inherited their ethnicity. Deaf inheritance and a failure to understand the ethnic status of culturally Deaf people have historically and at present placed the Deaf-World in jeopardy of ethnocide and even genocide.”); and Bridget Brown’s letter to the Chicago Tribune and Time magazine, Down Syndrome Development Council Forum 6, March 2007, page 3 (“I am a young woman with Down Syndrome. I am so sad to hear about all the babies with Down Syndrome being aborted. I am so grateful that I was not aborted because I have a full and wonderful life! I do not “suffer” from Down Syndrome. I believe in the sacred dignity of all people and most people I know with disabilities have full and productive lives. I learned about what Hitler did during the Holocaust. He killed many people he did not think had the right to live. He learned how to kill by killing people with disabilities first. My heart broke when I learned about this at the Holocaust museum. It seems to me we are doing the same thing to children with disabilities today in our country. I think this is like genocide—the systematic killing of a whole people or nation. I wonder why we think Hitler was so horrible when we are doing the same thing he did? My heart breaks again when I think that I might be the last generation of people with Down Syndrome. The world will never again benefit from our gifts. I will hold hope for people with disabilities and for all the people who think we don’t have the right to live.”).

393 Peter Singer’s description of Frank Shann occurs on pages 38–56 of Rethinking Life and Death: The Collapse of Our Traditional Ethics (1994); the quotation “If the cortex of the brain is dead . . .” occurs on page 42.

394 Peter Singer’s statement “Killing a disabled infant is not morally equivalent to killing a person” occurs on page 191 of Practical Ethics, 2nd ed. (1993). Singer’s definition of person can be found on pages 86–87. In full: “I shall for the moment put aside the tricky term ‘human’ and substitute two different terms, corresponding to the two different senses of ‘human.’ For the first sense, the biological sense, I shall simply use the cumbersome but precise expression ‘member of the species Homo sapiens’ while for the second sense I shall use the term ‘person.’

“This use of ‘person’ is itself, unfortunately, liable to mislead, since ‘person’ is often used as if it meant the same as ‘human being.’ Yet the terms are not equivalent; there could be a person who is not a member of our species. There could also be members of our species who are not persons. The word ‘person’ has its origin in the Latin term for a mask worn by an actor in classical drama. By putting on masks the actors signified that they were acting a role. Subsequently ‘person’ came to mean one who plays a role in life, one who is an agent. According to the Oxford Dictionary, one of the current meanings of the term is ‘a self-conscious or rational being.’ This sense has impeccable philosophical precedents. John Locke defines a person as ‘A thinking intelligent being that has reason and reflection and can consider itself as itself, the same thinking thing, in different times and places.’

“This definition makes ‘person’ close to what Fletcher meant by ‘human,’ except that it selects two crucial characteristics—rationality and self-consciousness—as the core of the concept. Quite possibly Fletcher would agree that these two are central, and the others more or less follow from them. In any case, I propose to use ‘person’ in the sense of a rational and selfconscious being, to capture those elements of the popular sense of ‘human being’ that are not covered by ‘member of the species Homo sapiens.’”

394 Peter Singer’s statement beginning “If we compare a severely defective human infant with a nonhuman animal . . .” occurs on page 128 of his article “Sanctity of life or quality of life?,” Pediatrics 72, no. 1 (July 1983). In full: “Once the religious mumbo-jumbo surrounding the term ‘human’ has been stripped away, we may continue to see normal members of our species as possessing greaten capacities of rationality, selfconsciousness, communication, and so on, than members of any other species; but we will not regard as sacrosanct the life of each and every member of our species, no matter how limited its capacity for intelligent or even conscious life may be. If we compare a severely defective human infant with a nonhuman animal, a dog or a pig, for example, we will often find the nonhuman to have superior capacities, both actual and potential, for rationality, self-consciousness, communication, and anything else that can plausibly be considered morally significant. Only the fact that the defective infant is a member of the species Homo sapiens leads it to be treated differently from the dog or pig. Species membership alone, however, is not morally relevant. Humans who bestow superior value on the lives of all human beings, solely because they are members of our own species, are judging along lines strikingly similar to those used by white racists who bestow superior value on the lives of other whites, merely because they are members of their own race.”

394 The story of the Miller family’s ordeal comes from the Supreme Court of Texas opinion in Miller v. HCA, Inc., 118 S.W.3d 758 (Tex. 2003),http://www.supreme.courts.state.tx.us/historical/2003/sep/010079.pdf; see also Kris Axtman, “Baby case tests rights of parents,” Christian Science Monitor, March 27, 2003.

394 See Not Dead Yet et al., “Brief of amici curiae in support of respondents,” Miller v. HCA, Inc., Civil Action No. 01-0079 (Supreme Court of Texas, filed March 21, 2002), http://www.notdeadyet.org/docs/millerbrief.html.

394 “Many disability rights advocates believe that the Millers’ suit promotes infanticide . . .” comes from Dave Reynolds, “Who has the right to decide when to save the sickest babies?,” Inclusion Daily Express, June 14, 2002.

395 The quotations from Ellen Wright Clayton (“I think that it is really inappropriate . . .”) and George Annas (“The truth is, no one really knows . . .”) come from Kris Axtman, “Baby case tests rights of parents,” Christian Science Monitor, March 27, 2003.

395 The excerpt from the New York Court of Appeals decision in Becker v. Schwartz, 46 N.Y.2d 401 (1978), is quoted in Pilar N. Ossorio, “Prenatal genetic testing and the courts,” in Prenatal Testing and Disability Rights, edited by Adrienne Asch and Erik Parens (2000), page 320.

395 This passage is based on my interview with Julia Hollander in 2006 and subsequent communications, as well as her book When the Bough Breaks: A Mother’s Story (2008).

396 The quotation from Julia Hollander beginning “In Limbo, the babies have died” comes from her book When the Bough Breaks: A Mother’s Story (2008), page 22. The quotation beginning “One night in the dark” comes from page 69.

399 All quotations from Tania Beale come from her article with Julia Hollander, “A tale of two mothers,” Guardian, March 8, 2008.

401 The quotations from Chris Borthwick come from pages 205 and 207 of his article “The proof of the vegetable,” Journal of Medical Ethics 21, no. 4 (August 1995).

402 For an exploration of the Jewish concept of God in relationship, see Martin Buber, I and Thou (2000); e.g., page 49: “Spirit is not in the I, but between I and Thou.”

402 The quotation from Maggie Robbins (“Consciousness is not a noun, it’s a verb”) comes from a personal communication in 2010.

402 For more information on parenting in animals, see Susan Allport, A Natural History of Parenting: A Naturalist Looks at Parenting in the Animal World and Ours (1997).

403 The quotations from Annie Leclerc (“the profound taste we have for children”) and Daphne de Marneffe (“not only to her recognition . . .”) occur on pages 90 and 82, respectively, of Daphne de Marneffe, Maternal Desire: On Children, Love, and the Inner Life (2004).

403 The quotation from Sigmund Freud (“parental love, which is so moving and at bottom so childish, is nothing but parental narcissism born again”) occurs on page 91 of On Narcissism: An Introduction (1981).

403 For Anna Freud’s thoughts on the mother-child relationship, see The Harvard Lectures (1992), especially Lecture Five (pages 65–78), “Stages of development.”

403 See Rozsika Parker, Torn in Two: The Experience of Maternal Ambivalence (1995, 2005). The quotation “the Scylla of intrusiveness and the Charybdis of neglect” occurs on page 140, while the quotation about “a sort of sadness” occurs on page 45.

VIII: Prodigies

406 The quotation from Raymond Radiguet (“Child prodigies exist . . .”) occurs on pages viii–ix of his novel Count d’Orgel’s Ball (1989).

406 The statement “A prodigy is a group enterprise” occurs on page 121 of David Henry Feldman and Lynn T. Goldsmith, Nature’s Gambit: Child Prodigies and the Development of Human Potential (1991).

407 See Steven Mithen, The Singing Neanderthals: The Origins of Music, Language, Mind and Body (2006).

407 Psychologist Anne Fernald of Stanford University has conducted pioneering research in the role of singsong “baby talk” in child development; see Anne Fernald, “Four month olds prefer to listen to motherese,” Infant Behavior & Development 8 (1985); and Anne Fernald and P. Kuhl, “Acoustic determinants of infant preference for motherese speech,” Infant Behavior and Development 10 (1987).

407 The quotation from John Blacking (music “is there in the body . . .”) occurs on page 100 of his book How Musical Is Man? (1973).

407 For a cross-cultural study of musical communication of emotion, see Thomas Fritz et al., “Universal recognition of three basic emotions in music,” Current Biology 19, no. 7 (April 2009).

407 Robert Garfias’s identification of music as a “primary means of sustaining a process of socialization” occurs on page 100 of his article “Thoughts on the process of language and music acquisition,” in Music and Child Development: Proceedings of the 1987 Biology of Music Making Conference, edited by F. Wilson and R. Roehmann (1989).

407 Géza Révész refers to Handel’s singing before he could talk on page 7 of The Psychology of a Musical Prodigy (1925). The story may, however, be apocryphal; Handel’s earliest biographer, John Mainwaring, does not describe Handel’s infancy.

407 Arthur Rubinstein describes his early habit of expressing his desires in song on page 4 of My Young Years (1973). In the case of the mazurka, the child was engaging not only in precocious musicality, but also in precocious punning; the word mazurka refers to both a traditional Polish folk dance and a dense Polish cake with fruit and nuts.

407 The quotation from John Sloboda (“Musical idioms are not languages”) occurs on page 106 of his essay “Musical ability,” in Ciba Foundation Symposium 178: The Origins and Development of High Ability (1993).

407 All quotations from Leon Botstein come from my interview with him in 2010 and subsequent communications.

407 This passage is based on my interviews with Evgeny Kissin, Emilia Kissin, and Anna Pavlovna Kantor in 1996, and on a subsequent interview with Evgeny Kissin in 2008, as well as other communications. The 1996 conversations formed the basis for my article “Questions of genius,” New Yorker, August 26, 1996; for another profile of Kissin, see Vadim Prokhorov, “The prodigy (Evgeny Kissin),” Guardian, January 2, 2004. Evgeny Kissin maintains a website at http://www.kissin.dk.

410 Evgeny Kissin’s Carnegie Hall debut garnered overwhelmingly positive reviews: see Allan Kozinn, “Recital by Yevgeny Kissin, a young Soviet pianist,” New York Times, October 2, 1990; Peter Goodman, “Sparks fly from his fingertips,” Newsday, October 2, 1990; Harold C. Schonberg, “Russian soul gets a new voice at the keyboard,” New York Times, October 7, 1990; and Michael Walsh and Elizabeth Rudulph, “Evgeny Kissin, new kid,” Time, October 29, 1990. In fact, one of the earliest American reviews of a Kissin recording refers to his performance as “astonishing”: K. Robert Schwarz, “What happens when prodigies grow up,” New York Times, September 4, 1989.

411 The quotation from Anne Midgette comes from her review “Kissin is dexterous but lacking in emotion,” Washington Post, March 2, 2009.

412 This passage is based on my interview with Yefim Bronfman in 2010. For another profile of Bronfman, see Anne Midgette, “A star who plays second fiddle to music,” New York Times, December 15, 2007. Bronfman is depicted in Philip Roth’s novel The Human Stain (2000).

412 Peter Kivy discusses Plato’s concept of genius throughout the first chapter (pages 1–13) of The Possessor and the Possessed: Handel, Mozart, Beethoven, and the Idea of Musical Genius (2001). Consider also Plato’s doctrine of anamnesis, or recollection, which holds that knowledge is innate, bestowed by the gods, and that learning is a matter of recalling what one already knows; this idea is elaborated most notably in his dialogues Phaedo and Meno, in The Works of Plato, 4 vols., translated by Benjamin Jowett (New York: Random House, 1937).

412 See Longinus, On the Sublime, translated by Thomas R. R. Stebbing (1867), page 4: “Can Sublimity be taught?”: “Now the question which meets us at the outset is this: whether elevation of style and the reverse can be reduced to rule, since some think it an utter delusion to apply the precepts of art to this kind of subject. For sublimity, they say, is the gift of Nature, not the result of teaching, and the only art which leads to it is native genius. The effects of natural abilities, they think, are impaired and altogether weakened under the debilitating influence of systematic rules. But I maintain, that to be convinced of the contrary, one has but to consider that what Nature loves in impassioned and exalted moods is a general independence, not a random course without plan or direction; and that while Nature supplies in all cases primary and archetypal elements of production, it is system which avails to point out the needful limitations, the seasonable opportunity, in short, to bring together all the proprieties of use and practice; and that genius without science, left alone with no ballast or ought to steady it, upon its own mere impulse and undisciplined impetuosity, has an inherent liability to shipwreck. For genius, be assured, requires the curb as often as the spur. For as Demosthenes remarks of life in general, that ‘chief among blessings is good fortune, but second thereto, or even equal, is good counsel,’ seeing that men without the latter must inevitably forfeit also the former, so might we say as to the use of language, that natural talent answers to good fortune, and the teaching of art to good counsel. And indeed for the leading fact itself, that there is that in oratory which Nature can alone supply, we are indebted to none other than as I said, of these particulars, the censor of the studious will no longer, I believe, deem the investigation of our present subject superfluous or unprofitable.”

412 John Locke’s statement “I imagine the minds of children as easily turn’d this or that way, as water it self??” occurs on page 2 of his work Some Thoughts Concerning Education (1695). In full: “I imagine the minds of children as easily turn’d this or that way, as water it self: and though this be the principal part, and our main care should be about the inside, yet the clay-cottage is not to be neglected. I shall therefore begin with the case, and consider first the health of the body, as that which perhaps you may rather expect from that study I have been thought more peculiarly to have apply’d my self to; and that also which will be soonest dispatch’d, as lying, if I guess not amiss, in a very little compass.”

412 Kant’s statement “If an author owes a product to his genius, he himself does not know how he came by the ideas for it” occurs on page 175 of Critique of Judgment (1987). In full: “What this shows is the following: (1) Genius is a talent for producing something for which no determinate rule can be given, not a predisposition consisting of a skill for something that can be learned by following some rule or other; hence the foremost property of genius must be originality. (2) Since nonsense too can be original, the products of genius must also be models, i.e., they must be exemplary; hence, though they do not themselves arise through imitation, still they must serve others for this, i.e., as a standard or rule by which to judge. (3) Genius itself cannot describe or indicate scientifically how it brings about its products, and it is rather as nature that it gives the rule. That is why, if an author owes a product to his genius, he himself does not know how he came by the ideas for it; nor is it in his power to devise such products at his pleasure, or by following a plan, and to communicate to others in precepts that would enable them to bring about like products. (Indeed, that is presumably why the word genius is derived from [Latin] genius, the guardian and guiding spirit that each person is given as his own at birth, and to whose inspiration those original ideas are due.) (4) Nature, through genius, prescribes the rule not to science but to art, and this also only insofar as the art is to be ?ne art.”

412 See E. F. J. Payne’s rendition on page 391 of The World as Will and Representation (1966), simplified here. “Talent hits a target no one else can hit; genius hits a target no one else can see” is a translation of Schopenhauer’s statement “Das Talent gleicht dem Schützen, der ein Ziel trifft, welches die übrigen nicht erreichen können; das Genie dem, der eins trifft, bis zu welchem sie nicht einmal zu sehen vermögen”; the original occurs on page 391 of Welt als Wille und Vorstellung, vol. 2 (1844). E. F. J. Payne’s more formal rendition of the sentence occurs (coincidentally) on page 391 of The World as Will and Representation (1966): “Talent is like the marksman who hits a target which others cannot reach; genius is like the marksman who hits a target, as far as which others cannot even see.”

412 See Francis Galton, Hereditary Genius (1869).

412 Lewis Terman’s research reports include “A new approach to the study of genius,” Psychological Review 29, no. 4 (1922); Genetic Studies of Genius, vol. 1, Mental and Physical Traits of a Thousand Gifted Children (1925); and The Gifted Group at Mid-Life: Thirty-Five Years Follow-Up of the Superior Child (1959).

413 Scott Barry Kaufman offers a critical review of Terman’s work in his article “The truth about the Termites,” Psychology Today, September 2009.

413 Paul Popenoe’s statement “no son of an unskilled laborer has ever become an eminent man of science in the United States” occurs on page 134 of his book The Child’s Heredity (1929).

413 For in-depth investigations of the contribution of the British and American eugenics movement to the development of Nazi racial policies, see Henry P. David, Jochen Fleischhacker, and Charlotte Hohn, “Abortion and eugenics in Nazi Germany,” Population & Development Review 13, no. 1 (March 1988); Timothy Ryback, Hitler’s Private Library (2010); and Edwin Black, War Against the Weak: Eugenics and America’s Campaign to Create a Master Race (2004).

413 Alfred Kroeber considers the subject of genius in Configurations of Culture Growth (1944).

413 This passage is based on my interviews with Leon Fleisher and Julian Fleisher in 2010 and subsequent communication. For more on Fleisher, see his autobiography, My Nine Lives (2010); Karen Wada’s article “A hand fate dealt him,” Los Angeles Times, February 18, 2007; and the documentary Two Hands: The Leon Fleisher Story (2006).

416 The quotation from Daines Barrington occurs on pages 285 and 286 of his “Account of a very remarkable young musician” (1780), reprinted in 2008 by the Mozart Society of America. The passage in its entirety: “His astonishing readiness, however, did not arise merely from great practice; he had a thorough knowledge of the fundamental principles of composition, as, upon producing a treble, he immediately wrote a base under it, which, when tried, had a very good effect. He was also a great master of modulation, and his transitions from one key to another were excessively natural and judicious; he practised in this manner for a considerable time with a handkerchief over the keys of the harpsichord. The facts which I have been mentioning I was myself an eyewitness of; to which I must add, that I have been informed by two or three able musicians, when Bach the celebrated composer had begun a fugue and left off abruptly, that little Mozart hath immediately taken it up, and worked it after a most masterly manner. Witness as I was myself of most of these extraordinary facts, I must own that I could not help suspecting his father imposed with regard to the real age of the boy, though he had not only a most childish appearance, but likewise had all the actions of that stage of life. For example, whilst he was playing to me, a favourite cat came in, upon which he immediately left his harpsichord, nor could we bring him back for a considerable time. He would also sometimes run about the room with a stick between his legs by way of horse. I found likewise that most of the London musicians were of the same opinion with regard to his age, not believing it possible that a child of so tender years could surpass most of the masters in that science.”

416 All quotations from Veda Kaplinsky come from my interview with her in 2010.

416 The Japanese proverb “the ten-year-old prodigy becomes a talented fifteen-year-old on the way to mediocrity at twenty” is cited in “Music: Prodigies’ progress,” Time, June 4, 1973.

416 All quotations from Charles Hamlen come from my interviews with him in 1996 and 2007 and other communications.

417 All quotations from Karen Monroe come from my interview with her in 2007.

417 The quotations from and about Van Cliburn occur on pages 182–83 of Claude Kenneson, Musical Prodigies: Perilous Journeys, Remarkable Lives (1993).

417 The increase in the number of piano competitions is chronicled in Michael Johnson, “The dark side of piano competitions,” New York Times, August 8, 2009.

417 All quotations from Robert Levin come from my interview with him in 2010.

417 This passage is based on my interview with Sue, Joe, and Drew Petersen in 2010 and subsequent communications.

418 All quotations from Miyoko Lotto come from Roberta Hershenson, “Playing piano recitals and skipping fifth grade,” New York Times, July 9, 2009.

419 All quotations from Justin Davidson come from my interviews with him in 2010 and 2012 and prior and subsequent communication.

420 “Craftsmanship has never stood in the way of genius” is an English-language paraphrase of a sentiment frequently expressed by Pierre-Auguste Renoir, as, for example, in a letter to the painter Henry Mottez, ca. 1910, quoted in Jean Renoir, Renoir: My Father (2001), pages 415–16. In full: ” . . .Certainly, there will always be Ingres and Corots, just as there have been Raphaels and Titians, but they are exceptions, for whom it would be presumptuous to write a treatise on painting. Those young artists who take the trouble to read Cennini’s book, in which the author has described the way his contemporaries lived, will note that the latter were not all men of genius, but they were always marvelous craftsmen. . . . All painting, from that of Pompeii, done by Greek artists . . . down to that of Corot, by way of Poussin, seems to have come from the same palette. Formerly all pupils learned this way of painting under their master. Their genius, if they had any, did the rest. . . . The stern apprenticeship imposed on young painters never prevented them from having originality. Raphael was the pupil of Perugino, but he became the divine Raphael, nevertheless.”

420 The quotation from Steven Isserlis (“It should be taught like a mixture of religion and science . . .”) comes from my interview with him in 2010.

420 This passage is based on my interviews with Mikhail, Natalie, Misha, and Natasha Paremski in 2007 and prior and subsequent communications.

421 Mannes College: The New School for Music website: http://www.newschool.edu/mannes.

421 Natasha Paremski’s performance of Rachmaninoff’s Piano Concerto no. 2 was described as both “fresh” and “raw” by reviewer Anne Midgette in “Pinch-hitting at Caramoor: Young pianist and Rachmaninoff,” New York Times, June 25, 2007.

422 For more information on absolute pitch, see Daniel J. Levitin and Susan E. Rogers, “Absolute pitch: Perception, coding, and controversies,” Trends in Cognitive Sciences 9, no. 1 (January 2005); and A. Bachem, “Absolute pitch,” Journal of the Acoustical Society of America 27, no. 6 (1955).

423 The anecdotes about children’s manifestation of absolute pitch come from my interview with David A. Ross in 2010, as do all quotations from him.

423 Acquisition of perfect pitch is discussed in Annie H. Takeuchi and Stewart H. Hulse, “Absolute pitch,” Psychological Bulletin 113, no. 2 (1993); and Diana Deutsch et al., “Absolute pitch among American and Chinese conservatory students,” Journal of the Acoustical Society of America 199, no. 2 (February 2006).

423 Daniel J. Levitin evaluates the ability of nonmusicians to replicate the opening pitches of popular songs in “Absolute memory for musical pitch: Evidence from the production of learned melodies,” Perception & Psychophysics 56, no. 4 (1994).

423 See Nicholas A. Smith and Mark A. Schmuckler, “Dial A440 for absolute pitch: Absolute pitch memory by non-absolute pitch possessors,” Journal of the Acoustical Society of America 123, no. 4 (April 2008).

423 Both anecdotes about the difficulties encountered in group performance by musicians with absolute pitch come from my interview with David A. Ross. Ross is lead author of “Absolute pitch does not depend on early musical training,” Annals of the New York Academy of Sciences 999, no. 1 (November 2003); “Absolute pitch: Music and beyond,” Epilepsy Behavior 7, no. 4 (December 2005); and “Absolute pitch in children prior to the beginning of musical training,” Annals of the New York Academy of Sciences 1169 (July 2009). For the study finding that many subjects are able to recognize minor pitch changes in familiar tunes, see Glenn Schellenberg and Sandra E. Trehub, “Good pitch memory is widespread,” Psychological Science 14, no. 3 (2003).

423 The seminal study on absolute pitch and the planum temporale is Gottfried Schlaug et al., “In vivo evidence of structural brain asymmetry in musicians,” Science, n.s., 267, no. 5198 (February 3, 1995); see also Julian Paul Keenan, “Absolute pitch and planum temporale,” Neuroimage 14, no. 6 (December 2001).

423 Thomas Elbert et al. reported the finding of brain enlargement in violin players in “Increased cortical representation of the fingers of the left hand in string players,” Science 270, no. 5234 (October 13, 1995).

423 For neuroimaging evidence of enhanced motor coordination in musicians, see Burkhard Maess et al., “Musical syntax is processed in Broca’s area: An MEG study,” Nature Neuroscience 4, no. 5 (May 2001); and Vanessa Sluming et al., “Broca’s area supports enhanced visuospatial cognition in orchestral musicians,” Journal of Neuroscience 27, no. 14 (April 4, 2007).

423 This passage is based on my interviews and conversations with Robert, Orna, and Jay Greenberg in 2007 and 2008 and subsequent communication.

424 The quotation from Samuel Zyman (“What would you do if you met an eight-year-old boy who can compose . . .”) comes from his article “New music from a very new composer,” Juilliard Journal, May 2003.

424 Jay’s description of his compositional mental process comes from Rebecca Leung, “Prodigy, 12, compared to Mozart,” CBS News, February 18, 2009.

424 The quotation from Nancy Andreasen (“. . . the creative process is similar in artists and scientists . . .”) occurs on page 78 of her book The Creating Brain: The Neuroscience of Genius (2005).

424 Jay’s description of the mathematical underpinnings of one of his compositions comes from the liner notes to the recording Symphony No. 5; Quintet for Strings (2006).

425 “My music does express my feelings . . .” comes from Matthew Gurewitsch, “Early works of a new composer (very early, in fact),” New York Times, August 13, 2006.

425 See The Complete Works of Aristotle, vol. 2, edited by Jonathan Barnes, translated by E. S. Forster (1984), Problemata xxx 1, 953a10–14: “Why is it that all those who have become eminent in philosophy or politics or poetry or the arts are clearly of an atrabilious temperament (????????????), and some of them to such an extent as to be affected by diseases caused by black bile, as is said to have happened to Heracles among the heroes?”

425 For a host of diabolical legends about Paganini, see G. I. C. De Courcy’s 1957 biography, Paganini the Genoese (repr., 1977); and “Fiddler Paganini’s ways: Stories and facts in the great man’s life,” New York Times, July 27, 1891. For a more modern take on the great violinist, see Maiko Kawabata, “Virtuosity, the violin, the devil . . . what really made Paganini ‘demonic’?,” Current Musicology, March 22, 2007.

425 The quotation from Cesare Lombroso occurs on page 333 of his book The Man of Genius (1888). In full: “We may confidently affirm that genius is a true degenerative psychosis belonging to the group of moral insanity, and may temporarily spring out of other psychoses, assuming their forms, though keeping its own special peculiarities, which distinguish it from all others.”

425 The role of dopamine receptors in the creative process is explored in Örjan de Manzano et al., “Thinking outside a less intact box: Thalamic dopamine D2 receptor densities are negatively related to psychometric creativity in healthy individuals,” PLoS One 5, no. 5 (May 17, 2010).

425 Norman Geschwind refers to “pathologies of superiority” in his paper “The biology of cerebral dominance: Implications for cognition,” Cognition 17, no. 3 (August 1984). Geschwind and Albert M. Galaburda are authors of Cerebral Lateralization (1987); Daniel Goleman reports on their work in his article “Left vs. right: Brain function tied to hormone in the womb,” New York Times, September 24, 1985.

426 Pinchas Noy describes preoccupation with music as a defensive strategy in “The development of musical ability,” Psychoanalytic Study of the Child 23 (1968).

426 Miraca Gross discusses resilience in child prodigies in her essay “Social and emotional issues for exceptional and intellectually gifted students,” in Maureen Neihart et al., The Social and Emotional Development of Gifted Children: What Do We Know? (2002), pages 19–30.

426 The quotation from Zarin Mehta (“Thank God we don’t have such talented children”) comes from my interview with him in 2010.

426 The quotation from Elisha Abas (“Sometimes the shoulders of a child are not big enough to handle his genius”) comes from Daniel J. Wakin, “Burned out at 14, Israeli concert pianist is back where he ‘really belongs,’New York Times, November 2, 2007.

426 All quotations from Joseph Polisi come from my interview with him in 2010.

426 The quotation from Brandenn Bremmer (“America is a society that demands perfection”) occurs on page 142 of Alissa Quart, Hothouse Kids: The Dilemma of the Gifted Child (2006); the quotation from his parents (“He was born an adult . . .”) comes from the news report “Child prodigy’s time to ‘do something great,’ Mom says,” Washington Post, March 20, 2005.

427 Terence Judd and Michael Rabin are both discussed in Richard Morrison, “The prodigy trap,” Sunday Times, April 15, 2005.

427 Christiaan Kriens is mentioned in Joyce Maynard, “Prodigy, at 13,” New York Times, March 4, 1973.

427 The quotation from Julian Whybra about suicide among gifted youth occurs on page 40 of his chapter, “Extension and enrichment programmes,” in Meeting the Social and Emotional Needs of Gifted and Talented Children, edited by Michael J. Stopper (2000). Nancy Robinson takes issue with the assertion that intellectually gifted children are less hardy than other children on page xiv of her introduction to The Social and Emotional Development of Gifted Children: What Do We Know?, edited by Maureen Neihart et al. (2002).

427 All quotations from Robert Sirota come from my interview with him in 2010 and subsequent communications.

427 Jascha Heifetz’s quip about the dangers of prodigiousness appears in the liner notes of his 1959 recording of Sibelius’s Violin Concerto (RCA Victor Red Seal/BMG Classics).

428 The quotation from Isaac Babel occurs on page 628 of The Complete Works of Isaac Babel, translated by Cynthia Ozick (2002). It has been condensed. In full: “Our fathers, seeing they had no prospects of their own, set up a lottery for themselves. They built this lottery on the bones of their little children. And sure enough, over the last few decades our town had sent a number of child prodigies onto the stages of the world. When a boy turned four or five, his mother took the tiny, frail creature to Mr. Zagursky. Zagursky ran a factory that churned out child prodigies, a factory of Jewish dwarfs in lace collars and patent leather shoes. There was powerful harmony in the souls of these little creatures with their swollen blue heads. They became acclaimed virtuosi. And so—my father decided to keep up with them. I had passed the age of child prodigies—I was almost fourteen—but because of my height and frailness I could be mistaken for an eight-year-old. Therein lay all our hopes.”

428 The quotations from Ruth Slenczynska occur on pages 31, 137, and 232 of her autobiography, Forbidden Childhood (1957).

428 The psychologist who examined Ervin Nyiregyházi was Géza Révész; his book is The Psychology of a Musical Prodigy (1925).

428 All quotations from Ervin Nyiregyházi come from Kevin Bazzana, Lost Genius: The Curious and Tragic Story of an Extraordinary Musical Prodigy (2007): “I was like a calling card,” page 44; “By the time I was five . . . ,” page 53; “My mother hated me,” page 37; and “Whatever obstacles were put in my way, I just gave up,” page 41. Nyiregyházi’s praise for Hitler is mentioned on page 40: “Perceiving himself to be emotionally deprived, struggling with the conflicting emotions of youth, he seems, self-defensively, to have projected all of the blame for his anxieties onto his mother, making her the enemy of everything he held dear. She died in the Holocaust, and he was once (while drunk) heard to say that Hitler was a great man because Hitler had killed his mother.”

428 This passage is based on my interview with Lorin Hollander in 2007.

429 Mozart originally wrote “Next to God comes Papa” in a March 1778 letter reproduced on page 183 of The Letters of Wolfgang Amadeus Mozart (1866); see also Maynard Solomon, Mozart: A Life (1996).

429 Paganini’s description of abuse by his father (“If he didn’t think I was industrious enough . . .”) is described on page 13 of G. I. C. de Courcy’s 1957 biography, Paganini the Genoese (repr., 1977), citing to Julius Max Schottky, Paganini’s Leben und Treiben als Kunstler und als Mensch (1830).

429 The quotation describing how Clara Wieck’s father examined and wrote in her diary occurs on pages 18–20 of Nancy B. Reich, Clara Schumann: The Artist and the Woman (1985); the quotation from Robert Schumann occurs on page 64: “You are, forgive me, like a pair of children,” he (Schumann) wrote on October 24, 1838. “You cry, he scolds, and it is still the same as ever. . . . You can’t belong to him and to me at the same time. You will have to leave one, him or me.”

429 This passage is based on my interview with Scott Frankel in 2010, and prior and subsequent communications.

431 All quotations in this passage come from an interview by Nikki Murfitt, “The heart-breaking moment I realised my mother had cut me off forever, by violin virtuoso Vanessa-Mae,” Daily Mail, August 7, 2008.

431 This passage is based on my interview with Nicolas Hodges in 2010 and subsequent communications.

432 Curtis Institute of Music in Philadelphia website: http://www.curtis.edu.

432 The anecdote about Rudolf Serkin was recounted to me in 2009 by Gary Graffman, the sometime director of Curtis, who was with Serkin when he made this remark.

432 The quotation from Yo-Yo Ma occurs on page 265 of Samuel and Sada Applebaum, The Way They Play, vol. 13 (1984).

432 The quotation from Thérèse Mahler comes from my interview with her in 2010.

433 The quotation from Hoang Pham comes from my interview with him in 2010.

433 This passage is based on my interview with Ken Noda in 2009 and subsequent communications.

433 Takayo Noda is an accomplished artist and poet; see http://www.takayonoda.com.

436 This passage is based on my interview with Candy Bawcombe in 2010.

439 This passage is based on my interview with David Waterman in 2010 and subsequent communications; see also his article “Four’s a crowd,” Times, January 17, 2004. Website of the Leeds International Pianoforte Competition, founded by Dame Fanny Waterman, DBE: http://www.leedspiano.com/. Website of the Endellion String Quartet: http://www.endellionquartet.com/.

441 This passage is based on my interview with Vikram, Marion, and Sondra Price in 2010. All names in this passage are pseudonyms, and some identifying details have been changed.

443 Mitsuko Uchida’s remark about society’s bewildering preoccupation with prodigies comes from a personal communication in 2012.

443 The quotation from Janice Nimura (“The child prodigy is the polite version of the carny freak . . .”) comes from her article “Prodigies have problems too,” Los Angeles Times, August 21, 2006.

443 The anecdote about Leonard Bernstein occurs on page 107 of Clifton Fadiman, The Little, Brown Book of Anecdotes (1985). In full: “Bernstein’s father was criticized for not having given his talented son more encouragement. ‘How was I to know he would grow up to be Leonard Bernstein?’ he protested.” I have heard the anecdote phrased as I have phrased it from other members of the Bernstein family.

443 This passage is based on my interview with Jonathan Floril in 2010.

444 The characterization of Jonathan Floril as “more than a prodigy, not only because of what he performs, but also how he performs” comes from Alfredo Brotons Muñoz, “Más que un prodigio,” Levante EMV, May 7, 2007. In the original: “Aunque, como luego se explicará, va más allá de eso, de momento no puede escapar a la calificación de prodigio. No sólo por cómo toca, sino por lo que toca.”

445 The quotation from Gore Vidal (“Hatred of one parent or the other can make an Ivan the Terrible or a Hemingway: the protective love, however, of two devoted parents can absolutely destroy an artist”) occurs on page 34 of his collection of essays Matters of Fact and Fiction (1977).

445 For the study finding a threefold increase in early parental loss among eminent people, see Catherine Cox, The Early Mental Traits of Three Hundred Geniuses (1926). Eighty-three years later, Dean Keith Simonton and Anna V. Song published a follow-up study, “Eminence, IQ, physical and mental health, and achievement domain: Cox’s 282 geniuses revisited,” Psychological Science 20, no. 4 (April 2009).

445 This passage is based on my interviews with Lang Lang and Lang Guoren in 2005 and 2009 and on other communications. Lang Lang maintains a website at http://www.langlang.com and has published two autobiographies, which I have used as sources: Lang Lang: Playing with Flying Keys (2008), with Michael French; and Journey of a Thousand Miles: My Story (2008), with David Ritz. I have also consulted David Remnick, “The Olympian: How China’s greatest musician will win the Beijing Games,” New Yorker, August 4, 2008; and made use of Dad’s Aspirations Are That High, by Yuanju Li (2001) (an unpublished English translation of : ???????? : ??????????? / Ba ba de xin jiu zhe mo gao: Gang qin tian cai Lang Lang he ta de fu qin).

448 John von Rhein likened Lang Lang to Liberace in his review “Bend the rules, but don’t break the bond,” Chicago Tribune, August 18, 2002.

448 For Anthony Tommasini’s caustic review of Lang Lang’s performance, see “A showman revs up the classical genre,” New York Times, November 10, 2003.

449 The favorable comment by Anthony Tommasini about Lang Lang comes from a 2008 review, “Views back (and forward) on an outdoor stage,” New York Times, July 17, 2008.

449 Popular books promoting the ten-thousand-hours hypothesis include Malcolm Gladwell, Outliers: The Story of Success (2008); Daniel Coyle, The Talent Code: Greatness Isn’t Born, It’s Grown (2009); and Geoff Colvin, Talent Is Overrated: What Really Separates World-Class Performers from Everybody Else (2010).

449 For the ten-thousand-hours study and follow-ups, see K. Anders Ericsson, R. T. Krampe, and C. Tesch-Romer, “The role of deliberate practice in the acquisition of expert performance,” Psychological Review 100 (1993); K. Anders Ericsson, Michael J. Prietula, and Edward T. Cokel, “The making of an expert,” Harvard Business Review, July–August 2007; and K. Anders Ericsson, Roy W. Roring, and Kiruthiga Nandagopal, “Giftedness and evidence for reproducibly superior performance,” High Ability Studies 18, no. 1 (June 2007).

450 For the study finding that practice time matters more than talent, see Michael J. A. Howe, Jane W. Davidson, and John A. Sloboda, “Innate talents: Reality or myth?,” Behavioural & Brain Sciences 21, no. 3 (June 1998).

450 The quotation from David Brooks comes from his article “Genius: The modern view, ” New York Times, May 1, 2009.

450 The quotation from Leopold Auer (“Practice three hours a day if you are any good . . .”) was recalled by his protégé Joseph Szigeti on page 4 of Szigeti on the Violin (1979).

450 For the original marshmallow study and follow-up reports, see Walter Mischel, E. B. Ebbesen, and A. R. Zeiss, “Cognitive and attentional mechanisms in delay of gratification,” Journal of Personality & Social Psychology 21, no. 2 (February 1972); Yuichi Shoda, Walter Mischel, and Philip K. Peake, “The nature of adolescent competencies predicted by preschool delay of gratification,” Journal of Personality & Social Psychology 54, no. 4 (1988); and Yuichi Shoda, Walter Mischel, and Philip K. Peake, “Predicting adolescent cognitive and self-regulatory competencies from preschool delay of gratification: Identifying diagnostic conditions,” Developmental Psychology 26, no. 6 (1990). Recent articles on Mischel’s current work include Susan Kenney’s “A marshmallow and a song,” General Music Today 22, no. 2 (January 2009); and Jonah Lehrer’s “Don’t! The secret of self-control,” New Yorker, May 18, 2009.

450 The dramatic difference in SAT scores between children who could delay gratification and those who could not was reported in Yuichi Shoda, Walter Mischel, and Philip K. Peake, “Predicting adolescent cognitive and self-regulatory competencies from preschool delay of gratification: Identifying diagnostic conditions,” Developmental Psychology 26, no. 6 (1990); and noted in Jonah Lehrer, “Don’t! The secret of self-control,” New Yorker, May 18, 2009.

450 The quotation from Angela L. Duckworth occurs in Jonah Lehrer, “Don’t! The secret of self-control,” New Yorker, May 18, 2009; see also Angela L. Duckworth and Martin E. P. Seligman, “Self-discipline outdoes IQ in predicting academic performance of adolescents,” Psychological Science 16, no. 12 (December 2005).

450 Ellen Winner refers to the “commonsense myth” that giftedness is “entirely inborn,” and the “psychologists’ myth” that “giftedness is entirely a matter of hard work” on page 308 of Gifted Children: Myths and Realities (1996).

450 The quotation from Edward Rothstein (“The contemporary attack on genius . . .”) comes from his article “Connections: myths about genius,” New York Times, January 5, 2002.

451 The quotation from Yehudi Menuhin (“Maturity, in music and in life, has to be earned by living”) occurs on page 22 of his biography Unfinished Journey (1977), as cited on page 44 of Claude Kenneson, Musical Prodigies: Perilous Journeys, Remarkable Lives (1993).

451 The quotation from Gabriel Kahane comes from my interview with him in 2010.

451 This passage is based on my experience attending Marc Yu’s New York debut in 2007, my interview with Chloe and Marc Yu that year, and subsequent communications.

454 A substantial body of research supports the hypothesis that tonal languages such as Chinese enhance musicality in young children; see, e.g., Diana Deutsch et al., “Absolute pitch among students in an American music conservatory: Association with tone language fluency,” Journal of the Acoustical Society of America 125, no. 4 (April 2009); and Ryan J. Giuliano et al., “Native experience with a tone language enhances pitch discrimination and the timing of neural responses to pitch change,” Frontiers in Psychology 2, no. 146 (August 2011). The observation about typical Chinese hand shape comes from my interview with Veda Kaplinsky.

454 The quotation from Mihaly Csikszentmihalyi (“One cannot be exceptional and normal at the same time”) occurs on page 177 of Creativity: Flow and the Psychology of Discovery and Invention (1996).

455 All quotations from Robert Blocker come from my interview with him in 2010.

455 This passage is based on my interview with May Armstrong in 2010.

456 Charles Hamlen told me the story about the tour of Los Alamos in 2007.

457 The quotation from the English journalist (“His playing was so cultured . . .”) comes from Stephen Moss, “At three he was reading the Wall Street Journal,” Guardian, November 10, 2005.

457 The quotation from Daniel Singal (“The problem is not the pursuit of equality but the bias against excellence that has accompanied it”) comes from his article “The other crisis in American education,” Atlantic Monthly, November 1991.

458 John Cloud’s characterization of the No Child Left Behind Act as “radically egalitarian” comes from his article “Are we failing our geniuses?,” Time, August 16, 2007.

458 For the Templeton report, see Nicolas Colangelo, A Nation Deceived: How Schools Hold Back America’s Brightest Students (2004).

458 The finding that 80 percent of gifted subjects constantly monitored their behavior to conform to the norms of less gifted children is reported on page 14 of Maureen Neihart et al., The Social and Emotional Development of Gifted Children (2002); the finding that 90 percent of subjects did not want to be identified as a “brain” comes from B. Bradford Brown and Laurence Steinberg, “Academic achievement and social acceptance: Skirting the ‘brain-nerd’ connection,” Education Digest 55, no. 7 (1990).

458 Miraca Gross presents the findings of her study of sixty gifted students in Australia in Exceptionally Gifted Children (1993); her subjects’ satisfaction with radical academic acceleration is discussed on pages 26–27.

458 The quotations from Norbert Wiener (“the suffering which grows from belonging half to the adult world and half to the world of the children about him” and “. . . I was not so much a mixture of child and man . . .”) occur on pages 117–18 and 106–7 of his autobiography, Ex-Prodigy: My Childhood and Youth (1953). From pages 117–18: “Every child, in gaining emotional security, believes in the values of the world around him, and thus starts by being, not a revolutionary, but an utter conservative. He wishes to believe that his elders, on whom he is dependent for the arrangement and control of the world in which he lives, are all wise and good. When he discovers that they are not, he faces the necessity of loneliness and of forming his own judgment of a world that he can no longer fully trust. The prodigy shares this experience with every child, but added to it is the suffering which grows from belonging half to the adult world and half to the world of the children around him.”

From Ex-Prodigy, pages 106–7: “My life was sharply divided between the sphere of the student and that of the child. I was not so much a mixture of child and man as wholly a child for purposes of companionship and nearly completely a man for purposes of study. Both my playmates and the college students were aware of this. My playmates accepted me as a child with them, although I might have been a slightly incomprehensible child, while my fellow students were willing to allow me to participate in their bull sessions if I wasn’t too loud and too insistent.”

See also Wiener’s sequel, I Am a Mathematician: The Later Life of a Prodigy (1956).

459 This passage is based on my interviews with Joshua Bell and Shirley Bell in 2007 and subsequent communications. Other profiles of and interviews with Joshua Bell include Adam Sweeting’s “In tune with today: Adam Sweeting meets violinist Joshua Bell,” Gramophone, December 1998; James Oestreich, “The violin odyssey of an all-American boy,” New York Times, August 31, 1998; and Laurie Niles, “Violinist.com interview with Joshua Bell,” Violinist, October 7, 2009.

460 Meadowmount School of Music website: http://www.meadowmount.com.

462 For an extensive history of sound recording, see David L. Morton Jr., Sound Recording: The Life Story of a Technology (2006). Digital reproductions of Thomas Edison’s papers documenting the invention of the phonograph can be found on the Rutgers University website http://edison.rutgers.edu/docsamp.htm.

463 This passage is based on my interviews with Conrad Tao and Mingfang Ting in 2010.

465 This passage is based on my interviews with Sylvester, Stephanie, and Christian Sands in 2010 and subsequent communication.

466 The jazzman’s term for this sort of exchange is trading fours. Oscar Peterson’s and Christian’s performances may be seen on YouTube at http://www.youtube.com/watch?v=fYpoWD1qmEA.

467 Paul Potts’s performance can be viewed at http://www.youtube.com/watch?v=1k08yxu57NA; and Jackie Evancho’s at http://www.youtube.com/watch?v=6ar0r02FZng.

467 This passage is based on my interviews with Nico Muhly, Bunny Harvey, and Frank Muhly in 2010–12, and on subsequent communications; see also Rebecca Mead, “Eerily composed: Nico Muhly’s sonic magic,” New Yorker, February 11, 2008.

468 Grace Episcopal Church in Providence invites anyone who enjoys singing to participate in their choirs; see http://www.gracechurchprovidence.org/music-at-grace/choral-music/.

471 See Alfred Louis Kroeber, Configurations of Culture Growth (1944), page 9: “In short, though the Principia could have been produced only by a genius like Newton and are the true expression of his personality, it is nevertheless clear that the existence of a certain body of science was needed before his genius could be touched off to realize itself in the Principia.”

471 The quotation from Isaac Newton comes from a letter he wrote to Robert Hooke, February 15, 1676, and occurs on page 231 of The Correspondence of Isaac Newton, vol. 3 (1961): “What Descartes did was a good step. You have added much several ways, & especially in taking the colours of thin plates into philosophical consideration. If I have seen further it is by standing on ye shoulders of Giants.”

472 See Lucretius, On the Nature of ?Things (1851). I came to this via Harold Bloom, who ran with the idea in How to Read and Why (2000). From Bloom’s introduction: “We read deeply for varied reasons, most of them familiar: that we cannot know enough people profoundly enough; that we need to know ourselves better; that we require knowledge, not just of self and others, but of the way things are. Yet the strongest, most authentic motive for deep reading of the now much-abused traditional canon is the search for a difficult pleasure. I am not exactly an erotics-of-reading purveyor, and a pleasurable difficulty seems to me a plausible definition of the Sublime, but a higher pleasure remains the reader’s quest. There is a reader’s Sublime, and it seems the only secular transcendence we can ever attain, except for the even more precarious transcendence we call ‘falling in love.’ I urge you to find what truly comes near to you, that can be used for weighing and considering. Read deeply, not to believe, not to accept, not to contradict, but to learn to share in that one nature that writes and reads.”

472 See Essays of Schopenhauer (1897), page 153: “What makes a man so very curious, as may be seen in the way he will spy into other people’s affairs, is boredom, a condition which is diametrically opposed to suffering;—though envy also often helps in creating curiosity.”

472 The quotation from Margaret Mead (“There is in America an appalling waste of first-rate talents . . .”) is condensed from a passage on page 213 of her essay “The gifted child in the American culture of today,” Journal of Teacher Education 5, no. 3 (1954), as cited on page 51 of Jan Davidson, Bob Davidson, and Laura Vanderkam, Genius Denied: How to Stop Wasting Our Brightest Young Minds (2004).

In full: “. . .there is in America today an appalling waste of first-rate talents, while the slightly superior people just because they do have to work hard to get straight A’s, are forgiven. Meanwhile the parents of gifted children are terrorized with behests to bring their children up to be normal happy human beings, and told horror stories about infant prodigies who go mad at twenty. In American psychology the theory of ‘special gifts’ competes and loses before two more congenial theories, (1) the theory of a general superiority factor, which makes you into an all-round superior person, in sports as well as in scholarship, in business or in music, or, (2) the specially gifted who are penalized by accusations of neuroses, and interpretations which make all special interests in childhood and adolescence into symptoms of trauma or psychological morbidity. Under these conditions it is not surprising that, as an English critic has acutely remarked, ‘The United States has more promising young people who fizzle out than any other country.’ First efforts, if they are recognized at all, are tailored into normal success terms, given prizes, published, exhibited prematurely, and forgotten.

“This is admittedly a grim picture—a startlingly grim picture especially when one realizes that parents all over the world dream of making it possible for their children to be born in America, the country where there are the resources and the freedoms necessary for the good life.

“What Can We Do?

“What as educators can we do about the situation, about recognizing and fostering those special, hereditary, discontinuous, incredible gifts which once in many centuries produce a Shakespeare, an Einstein, or a Leonardo da Vinci, an Abraham Lincoln or a St. Thomas Aquinas, and without whom a society, no matter how rich and industrious will stagnate in the end? In the first place, we have the culture with us the minute we have stated the difficulty, for as Americans, ‘the possible we do at once; the impossible takes a little bit longer.’ Furthermore as Americans, we feel a moral obligation to remedy our defects. If it is true that we are at present lamentably poor in fostering genius, then it is obvious that we had better recognize what the obstacles are and proceed to clear them away. So that the clearer the facing of the number of culturally regular myths about the desirability of normalcy, the undesirability of skipping stages—especially if those stages are places where one can be miserable as one’s predecessors have been miserable—the better. But such recognition is only a first step, because most of what a wise teacher or counselor tells the parents of a gifted child is true, culturally speaking. The culture tries to make the child with a gift into a one-sided person, to penalize him at every turn, to cause him trouble in making friends, and to create conditions conducive to the development of a neurosis. Neither teachers, the parents of other children, nor the child’s peers will tolerate the Wunderkind.”

472 The quotation from Rhonda Garelick (“crisis in admiration”) comes from a personal communication, 2011.

473 This passage is based on my interviews with Jeffrey, Martha, and Gabriel Kahane in 2009 and 2010. Gabriel Kahane maintains a professional website, where one can listen to and download Craigslistleider, at http://www.gabrielkahane.com. For another profile of Gabriel, see Steve Smith’s article “A singer-songwriter ignores musical boundaries,” New York Times, April 26, 2009.

475 The characterization of Gabriel Kahane as a “highbrow polymath” comes from Nate Chinen, “Gabriel Kahane, Where Are the Arms,” New York Times, September 19, 2011.

475 The quotation from Goethe’s mother (“Air, fire, water and earth . . .”) occurs on page 153 of Bruno Bettelheim, The Uses of Enchantment (1976). Bettelheim’s version is condensed from the original. Here is a different translation of the passage in its entirety, from pages 269–70 of BettinaVon Arnim’s book Goethe’s Correspondence with a Child (1839): “Air, fire, water and earth I represented to him as beautiful princesses and all, that happened in the whole of nature, received a signification, in which I soon believed myself, more firmly than my auditor, and when we had imagined to ourselves, streets between the constellations, and that we should once inhabit stars, and what great spirits we should meet there above, then there was no one so eager for the hour of narration with the children as I was, nay I was curious in the highest degree, about the further progress of our little imaginative tales, and an invitation, which robbed me of such an evening, was always vexatious to me. There I sat, and there he soon devoured me, with his great black eyes; and when the fate of any favourite did not turn out exactly according to his notion, I saw how the passionate veins swelled upon his forehead and how he choked his tears.—He often caught me up, and said, before I had taken the turn in my tale: ‘Mother, the princess won’t marry the nasty tailor, even if he does slay the giant, will she?’—When I made a stop and put off the catastrophe to the next evening, I might be sure, that during that time, he had put everything in right order and so, my imagination, when it could reach no further, was often supplied by his; and when the next evening, guiding the reins of fate according to his design, I said: ‘You have guessed it, so it happened,’ he became all fire and flame, and one could hear his little heart beat under his collar.”

IX: Rape

478 The Stigma Inc. website (http://www.stigmatized.org) is no longer online; an archived version can be viewed at http://web.archive.org/web/20070901030454/www.stigmatized.org/about.htm.

478 Rape as property theft is discussed in the entry “Sexual assault” in Encyclopedia of Rape, edited by Merrill D. Smith (2004), pages 224–25.

478 According to Encyclopedia of Rape, edited by Merrill D. Smith (2004), pages xiii–xvii, the Code of Hammurabi (c. 1780 BCE) “declared that a virgin was innocent if raped, but that her attacker should be executed. Married women who were raped were considered to be guilty of adultery and could be executed along with their attackers.” The Hittite Code of the Nesilim (c. 1650–1500 BCE) prescribed that “a woman who was raped within her own house could be executed.” The Assyrian Code of Assura (c. 1075 BCE) “permitted a husband to kill or punish his wife if she was raped.”

478 Rape in ancient Greece is explored in Daniel Ogden, “Rape, adultery and the protection of bloodlines in classical Athens,” in Rape in Antiquity, edited by Susan Deacy and Karen F. Pierce (1997), pages 25–41.

478 For more information on rape in ancient and seventeenth-century law, see “Ancient law codes,” in Encyclopedia of Rape, edited by Merrill D. Smith (2004), pages 14–15; and Else L. Hambleton, Daughters of Eve: Pregnant Brides and Unwed Mothers in Seventeenth-Century Massachusetts (2004).

478 Rape in classical mythology is discussed in “Art,” in Encyclopedia of Rape (2004), page 15; and James A. Arieti, “Rape and Livy’s view of Roman history,” in Rape in Antiquity, edited by Susan Deacy and Karen F. Pierce (1997), pages 209–29.

478 See “Rape of the Sabine women,” in Encyclopedia of Rape (2004), pages 196–97; and Norman Bryson, “Two narratives of rape in the visual arts: Lucretia and the Sabine women,” in Rape: An Historical and Cultural Enquiry, edited by Sylvana Tomaselli and Roy Porter (1986), pages 152–73.

479 The permissibility of infanticide of rape-conceived children is discussed in John Boswell, The Kindness of Strangers: The Abandonment of Children in Western Europe from Late Antiquity to the Renaissance (1998), page 200; see also “Pregnancy,” in Encyclopedia of Rape (2004), pages 154–55.

479 For more information on Galen’s ideas of rape and fertility, see “‘Blaming the victim’ syndrome” (pages 26–28) and “Pregnancy” (pages 154–55) in Encyclopedia of Rape (2004).

479 St. Augustine’s discussion of rape and humility is cited on page 251 of Corinne Saunder, “Classical paradigms of rape in the Middle Ages: Chaucer’s Lucretia and Philomenia,” in Rape in Antiquity (1997), edited by Susan Deacy and Karen F. Pierce, citing to Augustine, City of God Against the Pagans, vol. 1, edited and translated by George E. McCracken (1957).

For Latin aficionados who wish to go to the source, here’s the Bishop of Hippo’s own words as they appear in Corpus Scriptorum Ecclesiasticorum Latinorum, vol. 40 (1899), pages 49–50: “[XXVIII] Non itaque uobis, o fideles Christi, sit taedio uita uestra, si ludibrio fuit hostibus castitas uestra. Habetis magnam ueramque consolationem, si fidam conscientiam retinetis non uos consensisse peccatis eorum, qui in uos peccare permissi sunt. Quod si forte, cur permissi sint, quaeritis, alta quidem est prouidentia creatoris mundi atque rectoris, et inscrowtabilia sunt iudicia eius et inuestigabiles uiae eius, uerum tamen interrogate fideliter animas uestras, ne forte de isto integritatis et continentiae uel pudicitiae bono uos inflatius extulistis et humanis laudibus delectatae in hoc etiam aliquibus inuidistis. Non accuso quod nescio, nec audio quod uobis interrogata uestra corda respondent. Tamen si ita esse responderint, nolite admirari hoc uos amisisse, unde hominibus placere gestistis, illud uobis remansisse, quod ostendi hominibus non potest. Si peccantibus non consensistis, diuinae gratiae, ne amitteretur, diuinum accessit auxilium; humanae gloriae, ne amaretur, humanum successit opprobrium. In utroque consolamini, pusillanimes, illinc probatae hinc castigatae, illinc iustificatae hinc emeatae.

“Quarum uero corda interrogata respondent numquam se de bono uirginitatis uel uiduitatis uel coniugalis pudicitiae superbisse, sed humilibus consentiendo de dono Dei cum tremore exultasse, nec inuidisse cuiquam paris excellentiam sanctitatis et castitatis, sed humana laude postposita, quae tanto maior deferri solet, quanto est bonum rarius, quod exigit laudem, optasse potius ut amplior earum numerus esset, quam ut ipsae in paucitate amplius eminerent: nec istae, quae tales sunt, si earum quoque aliquas barbarica libido compressit, permissum hoc esse causentur, nec ideo Deum credant ista neglegere, quia permittit quod nemo inpune committit. Quaedam enim ueluti pondera malarum cupiditatum et per occultum praesens diuinum iudicium relaxantur et manifesto ultimo reseruantur. Fortassis autem istae, quae bene sibi sunt consciae non se ex isto castitatis bono cor inflatum extulisse, et tamen uim hostilem in carne perpessae sunt, habebant aliquid latentis infirmitatis, quae posset in superbiae fastum, si hanc humilitatem in uastatione illa euasissent, extolli. Sicut ergo quidam morte rapti sunt, ne malitia mutaret intellectum eorum, ita quiddam ab istis ui raptum est, ne prosperitas mutaret modestiam earum. Vtrisque igitur, quae de carne sua, quod turpem nullius esset perpessa contactum, uel iam superbiebant uel superbire, si nec hostium uiolentia contrectata esset, forsitan poterant, non ablata est castitas, sed humilitas persuasa; illarum tumori succursum est inmanenti, istarum occursum est inminenti.

“Quamquam et illud non sit tacendum, quod quibusdam, quae ista perpessae sunt, potuit uideri continentiae bonum in bonis corporalibus deputandum et tunc manere, si nullius libidine corpus adtrectaretur; non autem esse positum in solo adiuto diuinitus robore uoluntatis, ut sit sanctum et corpus et spiritus; nec tale bonum esse, quod inuito animo non possit auferri; qui error eis fortasse sublatus est. Cum enim cogitant, qua conscientia Deo seruierint, et fide inconcussa non de illo sentiunt, quod ita sibi seruientes eumque inuocantes deserere ullo modo potuerit, quantumque illi castitas placeat dubitare non possunt, uident esse consequens nequaquam illum fuisse permissurum, ut haec acciderent sanctis suis, si eo modo perire posset sanctitas, quam contulit eis et diligit in eis.”

479 Rape in seventeenth- to eighteenth-century America is discussed in “Rape in the United States: Eighteenth century,” Encyclopedia of Rape (2004), pages 179–81; and Else L. Hambleton, Daughters of Eve: Pregnant Brides and Unwed Mothers in Seventeenth-Century Massachusetts (2004).

479 The quotation from the Kingston British Whig occurs on page 115 of Patrick J. Connor, “The law should be her protector: The criminal prosecution of rape in upper Canada, 1791–1850,” in Sex Without Consent: Rape and Sexual Coercion in America, edited by Merrill D. Smith (2001), pages 103–35.

479 For more information on the rape of African slaves and disparate treatment of black and white suspects and perpetrators, see the chapter “Slavery” in Susan Brownmiller, Against Our Will: Men, Women, and Rape (1975), pages 153–69; the entries “African-Americans” (pages 5–7) and “Slavery” (pages 234–36) in Encyclopedia of Rape (2004); Diane Miller Sommerville, “‘I was very much wounded’: Rape law, children, and the antebellum South,” in Sex Without Consent: Rape and Sexual Coercion in America, edited by Merrill D. Smith (2001), pages 136–77; and Diana Miller Sommerville, Rape and Race in the Nineteenth-Century South (2004).

479 The legal requirement that women resist is discussed in the Encyclopedia of Rape entry “Rape in the United States: Nineteenth century,” pages 181–83.

479 The experience of rape-conception in the mid-twentieth century is discussed throughout Rickie Solinger, Wake Up Little Susie: Single Pregnancy and Race before Roe v. Wade (2000); the quotation from the mother (“If a certain male wanted to get out of being named the true father . . .”) occurs on page 73.

479 See the Encyclopedia of Rape entry “Freud, Sigmund/Freudian theory,” pages 82–83.

480 The quotations from Menachem Amir come from his study Patterns in Forcible Rape (1971). From page 254: “Reflected in women is the tendency for passivity and masochism, and a universal desire to be violently possessed and aggressively handled by men”; and page 258: “In a way, the victim is always the cause of the crime.”

480 See Susan Brownmiller, Against Our Will (1975).

480 Brownmiller’s call for “gender free, non-activity-specific” sexual assault laws occurs on page 378 of Against Our Will (1975).

480 The historic definition of rape as “an act of sexual intercourse undertaken by a man with a woman, not his wife, against her will and by force” occurs in the Encyclopedia of Rape entry “Rape law,” page 186. Marital rape and the marital exception are discussed in Diana E. H. Russell, Rape in Marriage (1990); David Finkelhor and Kersti Yllö, License to Rape: Sexual Abuse of Wives (1985); Jacquelyn C. Campbell and Peggy Alford, “The dark consequences of marital rape,” American Journal of Nursing 89, no. 7 (July 1989); and the Encyclopedia of Rape entries “Hale, Sir Matthew (1609–1676)” (pages 94–95) and “Marital rape” (pages 122–24).

480 Michel Foucault’s pronouncement “There is no difference, in principle, between sticking one’s fist into someone’s face or one’s penis into their sex” occurs in his essay “Confinement, psychiatry, prison,” in Politics, Philosophy, Culture: Interviews and Other Writings, 1977–1984 (1988), page 200.

480 For a discussion of state and federal laws on sexual assault in the United States, see the entry “Rape law” in Encyclopedia of Rape (2004), pages 186–89.

480 The relative severity of punishment for sexual offenses is discussed in the entry “Rape law” in Encyclopedia of Rape, pages 186–89; and Diane E. H. Russell and Rebecca M. Bolen, The Epidemic of Rape and Child Sexual Abuse in the United States (2000).

481 Statistics on sexual assault occur on pages 35–36 of Patricia Tjaden and Nancy Thoennes, Full Report of the Prevalence, Incidence, and Consequences of Violence Against Women: Findings from the National Violence against Women Survey (2000). The CDC’s identification of rape as “one of the most underreported crimes” occurs in the news item “Sexual Assault Awareness Month, April 2005,” Morbidity & Mortality Weekly Report 54, no. 12 (April 1, 2005), page 311.

481 This passage is based on my interview with Marina James in 2008. All names in this passage are pseudonyms.

484 Wolfgang Jöchle originally argued that fear might induce human ovulation in “Coitus-induced ovulation,” Contraception 7, no. 6 (1973); and Mary M. Krueger in “Pregnancy as a result of rape,” Journal of Sex Education & Therapy 14, no. 1 (1988); for a recent review of the subject, see Juan J. Tarín, Toshio Hamatani, and Antonio Cano, “Acute stress may induce ovulation in women,” Reproductive Biology & Endocrinology 8, no. 53 (2010), pages 1–13.

484 The estimate that as few as 3 percent of female rape victims become pregnant comes from Allen J. Wilcox et al., “Likelihood of conception with a single act of intercourse: Providing benchmark rates for assessment of post-coital contraceptives,” Contraception 63, no. 4 (April 2001), pages 211–15.

484 Melissa M. Holmes et al. report an increased incidence of pregnancy among rape victims who are regularly abused in “Rape-related pregnancy: Estimates and descriptive characteristics from a national sample of women,” American Journal of Obstetrics & Gynecology 175, no. 2 (August 1996).

484 The estimate that twenty-five thousand rape-related pregnancies occur annually in the United States comes from Felicia H. Stewart and James Trussell, “Prevention of pregnancy resulting from rape: A neglected preventive health measure,” American Journal of Preventive Medicine 19 (November 2000); the thirty-two thousand estimate is from Melissa M. Holmes et al., “Rape-related pregnancy: Estimates and descriptive characteristics from a national sample of women,” American Journal of Obstetrics & Gynecology 175, no. 2 (August 1996).

485 For the 1996 study of child-bearing decisions made by rape victims, see Melissa M. Holmes et al., “Rape-related pregnancy: Estimates and descriptive characteristics from a national sample of women,” American Journal of Obstetrics & Gynecology 175, no. 2 (August 1996).

485 The quotation from Ana Milena Gil (“Pregnancy born of desire and fed by love . . .”) comes from her paper (with Ana Maria Jaramillo and Bertha Ortiz), “Pregnancy resulting from rape: Breaking the silence of multiple crises,” Women’s Health Collection, January 1, 2001.

485 The rape victim’s question “If someone shot you, would you walk around with a bullet inside of you?” comes from Natela Cutter, “‘Anne Smith’: A rape victim found relief in the abortion,” U.S. News & World Report 124, no. 2 (January 19, 1998).

486 The statement “The baby was innocent . . .” comes from Amy Engeler, “I can’t hate this baby,” Redbook 192, no. 4 (February 1999).

486 All quotations from Joan Kemp come from her article “Abortion: The second rape,” Sisterlife, Winter 1990.

486 The quotation from Kay Zibolsky (“The baby was part of my healing process . . .”) comes from Marie McCullough, “Abortion, rape debate,” Chicago Tribune, September 26, 1995.

486 The quotation from Kathleen DeZeeuw (“I began to realize that this little life inside me was struggling, too . . .”) comes from the film Children of Rape (1994).

486 The quotation from Sharon Bailey (“Basically, my feelings were ‘It’s just you and me, kid’”) occurs on page 86 of Victims and Victors: Speaking Out about Their Pregnancies, Abortions, and Children Resulting from Sexual Assault, edited by David C. Reardon, Julie Makimaa, and Amy Sobie (2000).

486 The quotation from Kathleen DeZeeuw (“The first time I held him . . .”) comes from the film Children of Rape (1994).

486 The quotation “I had tried to convince myself . . .” occurs on page 87 of Victims and Victors: Speaking Out about Their Pregnancies, Abortions, and Children Resulting from Sexual Assault, edited by David C. Reardon, Julie Makimaa, and Amy Sobie (2000).

486 The passage by Padmasayee Papineni comes from her article “Children of bad memories,” Lancet 362, no. 9386 (September 6, 2003). It has been condensed. In full: “Rape survivors have a much greater fear about intimacy and in terms of attachment dimensions, have less confidence in others’ dependability, less comfort with closeness, and more fear of abandonment. This fear of attachment manifests in the relationship with the child, and feelings of rejection by the mother towards the infant can lead to a wide range of psychological consequences in the child. A series of interviews done with children conceived through rape who lived with their mothers, revealed that the mother-child relationships formed were very traumatic, since the ‘children constantly reminded mothers of the horrors of rape, and that inevitably influenced mutual relations.’”

For the source of the quote “children constantly reminded mothers of the horrors of rape, and that inevitably influenced mutual relations,” Papineni cites to Vesna Nikoli?-Ristanovi?, Women, Violence and War: Wartime Victimisation of Refugees in the Balkans (Budapest: Central European University Press, 2000); who in turn cites to H. Sandher and B. Johr, Befreier und Befreite (The Liberator and the Liberated) (Berlin: Kunstmann, 1992), page 94.

487 This passage is based on my interview with Brenda Henriques in 2007. All names in this passage are pseudonyms.

489 My primary source on the history of abortion law is Leslie J. Reagan, When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973 (1997); and the Encyclopedia of Rape entry “Abortion,” pages 2–4.

489 The quotations from the American Medical Association come from the organization’s position statement “Pregnancy from rape does not justify abortion,” Journal of the American Medical Association 43 (August 6, 1904), page 413.

489 The rise in illegal abortions during the Great Depression is chronicled in chapter 5 of Leslie J. Reagan, When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973 (1997), pages 132–59.

489 The suggestion that offering abortions to unmarried women and widows would result in “lowering of the moral tone” occurs in Frederick J. Taussig’s review of Abortion: Legal or Illegal? by A. J. Rongy, Birth Control Review 17 (?June 1933), page 153, as cited in Leslie J. Reagan, When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973 (1997), page 142. Taussig’s description of social and economic conditions that would justify offering abortions occurs on pages 443–44 of his book The Prevention and Treatment of Abortion (1910), as cited in Leslie J. Reagan, When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973 (1997), page 142. It has been condensed. In full: “In a poorly nourished woman with a large family, we must regard the saving of fetal life with less concern than in the woman who can and will carry out sanatorium treatment for the required period of time during and after her pregnancy, and for whom the saving of the child is a matter of great concern. In such women with but one or no children we may, even in active cases, refrain from intervention, while in those whose external conditions make the pregnancy and the subsequent care of the child a serious burden, we would incline more readily, even in latent cases, to an interruption.”

The words “deserve” and “abuse,” which appear here in quotes, do not appear in Taussig, but in Reagan.

489 The 1938 trial of Aleck Bourne for abortion is described in Leslie J. Reagan, When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973 (1997), page 175. Later in life, Bourne became an antiabortion advocate, serving as a founding member of the Society for the Protection of Unborn Children. See A Way of Life: Affirming a Pro-Life Culture in Northern Ireland (London: Society for the Protection of Unborn Children, 2002). From page 56: “In 1938, a London gynaecologist named Aleck Bourne tested the laws by performing an abortion on a 14-year-old girl who had apparently been raped by several soldiers. He gave himself up to police, was charged with an illegal abortion, and pleaded not guilty on the basis that the girl’s mental health would have been adversely affected by giving birth. Bourne was acquitted after the judge, Mr Justice Macnaughten, told the jury that the proviso permitting an abortion to save the life of the mother included in the Infant Life (Preservation) Act 1929 should be read back into the Offences Against the Person Act 1861. Then, controversially, he invited the jury to decide whether Dr Bourne’s declared intention amounted to ‘preserving the life’ of the young woman. The jury acquitted him and the case was never appealed.

“The effect of the Bourne case was to authorise abortion to prevent damage to a woman’s physical or mental health, a test which became interpreted more and more liberally. The influence of the judge’s comments extended far afield, to Commonwealth countries such as Australia. Aleck Bourne eventually became appalled at the results of his case and became a founder member of the Society for the Protection of Unborn Children.”

489 Abortion committees are discussed in Leslie J. Reagan, When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973 (1997), pages 174–75.

490 The quotation from the pathologizing, victim-blaming social worker (“She became a passive object . . .”) occurs on page 133 of Rickie Solinger, Wake Up Little Susie: Single Pregnancy and Race before Roe vs. Wade (2000), citing to Marion K. Sanders, “Social work: A profession chases its tail,” Harper’s, March 1957. In full: “She would not talk about the father of the baby. She had gone out with him to amuse herself. He was tender and sweet and did not make sexual demands on her except in a laughing casual way. Then one night he became very passionate and she could not defend herself. She became a passive object and could not say ‘no.’ Here we see a girl who having lost parental love, continues to search for love and her primary motivation became centered in getting her dependent needs met. She took the man’s sexual interest as love and an opportunity to be loved by somebody.”

490 Early proposals to legalize abortion are discussed in Leslie J. Reagan, When Abortion Was a Crime: Women, Medicine, and Law in the United States, 1867–1973 (1997), pages 220–21.

490 Coerced relinquishment and maternity homes are central subjects of Rickie Solinger, Wake Up Little Susie: Single Pregnancy and Rape before Roe v. Wade (2000) and Beggars and Choosers: How the Politics of Choice Shapes Adoption, Abortion, and Welfare in the United States (2001).

490 The quotation from Kathleen Leahy Koch (“I was just someone who had to have a baby for some worthy family . . .”) occurs on page 73 of Rickie Solinger, Beggars and Choosers: How the Politics of Choice Shapes Adoption, Abortion, and Welfare in the United States (2001).

490 The quotation from Kay Ball (“I was so ashamed and beaten down emotionally . . .”) occurs on page 75 of Rickie Solinger, Beggars and Choosers: How the Politics of Choice Shapes Adoption, Abortion, and Welfare in the United States (2001).

490 Post-Roe abortion politics are explored in William Saletan, “Electoral politics and abortion: Narrowing the message,” in Abortion Wars: A Half Century of Struggle, 1950–2000, edited by Rickie Solinger (1998); and Saletan’s book Bearing Right: How Conservatives Won the Abortion War (2003) (results of the poll appear on page 163).

491 Idaho governor Cecil D. Andrus is quoted in Timothy Egan, “Idaho governor vetoes measure intended to test abortion ruling,” New York Times, March 31, 1990. In full: “‘This law would force the woman to compound the tragedy of rape,’ Mr. Andrus said. Referring to the seven-day reporting requirement for victims of rape, he said, ‘On the eighth day, she ceases to be the victim and becomes a criminal.’”

491 See William Saletan, Bearing Right: How Conservatives Won the Abortion War (2003). From page 168: “As television cameras and an overflow crowd looked on, [Louisiana state representative Woody] Jenkins explained how abortion for ‘birth control’ tempted young men and women to sin:

“‘[L]ook at what has happened since 1973. Teenage pregnancy has skyrocketed. Illegitimacy has skyrocketed. Welfare has skyrocketed. . . . Abortion has become birth control of last resort. [Teenagers] knew that if all else went wrong and there was a pregnancy, they could get an abortion. The young boys, the young males, have known that and so have the young females, and so they have been much more lax and much more liberal in their sexual practices. . . . They’re having teenage pregnancies, and they’re having illegitimate children and they’re putting children on welfare.’”

From pages 172–73: “Allusions to chastity and wantonness littered the hearing. Cross and another senator accused pro-choice witnesses of ‘advocating abortion as a method of birth control.’ Cross challenged the extent of a woman’s authority over her body, protesting that if she were granted a right to abortion, she would have to be granted ‘a right to prostitute her body’ and perhaps to use illegal drugs. Another lawmaker agreed: ‘We do not allow women to prostitute themselves. We do not allow them to be illegal drug users. There is no absolute freedom to use one’s body as you so desire.’

“This line of reasoning only made the rape exception more compelling. ‘I’m pro-life, but I believe there ought to be some exceptions,’ said a Methodist minister. ‘Why should we burden a young mother with an unwanted child if it wasn’t the result of her own misconduct. She’s blameless, so why should she be punished?’ One senator bluntly said he wanted to ban most abortions but would vote against the bill because it failed to exempt rape and incest. Another distinguished abortion in rape cases from abortion for birth control: ‘I do not believe that we should use abortion as a form of contraceptive. . . . But I do think that there are certain circumstances where a woman should have the right, the opportunity to make a decision: Life of the mother . . . Rape and incest . . . I cannot in good conscience say to a woman that if you are raped by some thug on the streets, you must have that thug’s baby.’”

See also Michael Baruzzini, “Justice or comfort?: Conservatives and the rape exceptions,” Catholic Lane, June 16, 2011, at http://catholiclane.com/justice-or-comfort-conservatives-and-the-rape-exception (“The defense of the rape exception often stems from arguments based on a notion of ‘responsibility.’ Abortion is wrong, in this view, because those who choose to engage in sexual intercourse have the obligation to accept the consequences of their free choices. One cannot choose sex, and then violently attempt to undo that choice through abortion; therefore abortion is ordinarily wrong. Rape, however, is different because the victim did not choose her situation. The pregnancy that results from rape is itself the effect of a violent offense. Therefore, the logic goes, it is acceptable, though unfortunate, that this intrusion be remedied by recourse to abortion.”); and the Church of Jesus Christ of Latter Day Saints, “The law of chastity,” Gospel Principles (2012), at http://www.lds.org/library/display/0,4945,11-1-13-49,00.html (“If a child is conceived by those who break the law of chastity, they may be tempted to commit another abominable sin: abortion. There is seldom any excuse for abortion. The only exceptions are when pregnancy has resulted from incest or rape; the life or health of the woman is in jeopardy in the opinion of competent medical authority; or the fetus is known, by competent medical authority, to have severe defects that will not allow the baby to survive beyond birth.” So the “sin” of abortion is forgiven if the woman has not willfully committed the sin of being unchaste.).

491 The quotation from the antiabortion advocate (“It would be wrong . . . Two wrongs do not make a right”) comes from Bob Ellis, “South Dakota abortion task force studies rape exceptions,” Dakota Voice, January 20, 2006.

491 Megan Barnett states, “My child is not the exception . . .” in the film I Love My Baby Who Was Conceived by Rape (2006) Barnett was widely quoted throughout the 2006 election season; see, e.g., David Crary, “Campaign 2006: South Dakota nears abortion ban vote: Opposing groups flood the state for November 7 referendum,” Houston Chronicle, October 9, 2006; Angela Mettler, “Speakers rally on issues,” Aberdeen American News, October 18, 2006; and Judy Peres, “In South Dakota, abortion the issue: Referendum on ban roils low-key state,” Chicago Tribune, October 21, 2006..

491 The quotation from John C. Willke (“The woman has been subjected to an ugly trauma”) comes from Bob Ellis, “South Dakota abortion task force studies rape exceptions,” Dakota Voice, January 20, 2006.

491 Rebecca Kiessling’s statement “I am not a product of rape, but a child of God” comes from her pamphlet, “Conceived in Rape: A Story of Hope.” The sarcastic reply occurs on the January 26, 2009, entry of the First World Problems blog, at http://ivytheadventure.livejournal.com/2009/01/26/.

491 The quotation from Joan Raphael-Leff (“an internal foreigner . . .”) occurs on page 129 of her paper “Psychotherapy and pregnancy,” Journal of Reproductive & Infant Psychology 8, no. 2 (April 1990). It has been condensed. In full: “Finally, in common with other ‘wrong’ impregnators like an unloved partner, an irresponsible man or ‘substitute’ for someone else, all of these mean that the woman feels she has growing inside her part of a hateful or distasteful Other. Unless this feeling can be resolved, the foetus who takes on these characteristics, is liable to remain an internal foreigner, barely tolerated or in constant danger of expulsion, and the baby will emerge part-stranger likely to be ostracised or punished.”

491 The quotation from the rape survivor who characterized her child as “a living, breathing torture mechanism” occurs on page 183 of William Saletan, Bearing Right (2003), citing to the Minutes of the Louisiana Senate Committee on Health and Welfare, May 29, 1991.

491 The mother who described the experience of rape-related pregnancy as “entrapment beyond description” is quoted on page 133 of David Finkelhor and Kersti Yllö, License to Rape (1985).

492 Joan Kemp describes abortion as a solution “that is imposed by a society that places too much importance on a male lineage” in her article “Abortion: The second rape,” Sisterlife, Winter 1990.

492 Denise Kalasky describes her abortion experience in her article “Accomplices in incest,” Post-Abortion Review 2, no. 1 (Winter 1993).

492 David C. Reardon is author of “Rape, incest and abortion: Searching beyond the myths,” Post-Abortion Review 2, no. 1 (Winter 1994); and coeditor with Julie Makimaa and Amy Sobie of the anthology Victims and Victors: Speaking Out about Their Pregnancies, Abortions, and Children Resulting from Sexual Assault (2000). The Elliott Institute website: http://www.afterabortion.info.

492 David Mall and Walter F. Watts first posited the existence of a “postabortion syndrome” in their book, The Psychological Aspects of Abortion (1979), a concept further promoted by Joyce Arthur in “Psychological aftereffects of abortion: The rest of the story,” Humanist 57, no. 2 (March–April 1997). Controversy over the legitimacy of PAS is discussed in Emily Bazelon, “Is there a post-abortion syndrome?,” New York Times Magazine, January 21, 2007.

492 David Reardon’s characterization of abortion as “medical rape” occurs in his article “Rape, incest and abortion: Searching beyond the myths,” Post-Abortion Review 2, no. 1 (Winter 1994).

492 The quotation from Sandra Mahkorn (“can be lessened with proper support”) occurs on page 67 of her chapter, “Pregnancy and sexual assault,” in The Psychological Aspects of Abortion, edited by David Mall and Walter F. Watts (1979).

492 The quotation from George E. Maloof (“Incestuous pregnancy offers a ray of generosity to the world . . .”) occurs on page 98 of his chapter, “The consequences of incest: Giving and taking life,” in The Psychological Aspects of Abortion, edited by David Mall and Walter F. Watts (1979).

493 Statistics pertaining to the frequent discovery of rape-related pregnancy in the second trimester come from Melissa M. Holmes et al., “Rape-related pregnancy: Estimates and descriptive characteristics from a national sample of women,” American Journal of Obstetrics & Gynecology 175, no. 2 (August 1996).

493 The quotation from Susan Brison (“Trauma not only haunts the conscious and unconscious mind . . .”) occurs on page x of the introduction to her book Aftermath: Violence and the Remaking of a Self (2002).

493 Vera Folnegovic´-Šmalc’s description of suicidality among rape victims comes from her chapter, “Psychiatric aspects of the rapes in the war against the republics of Croatia and Bosnia-Herzegovina,” in Mass Rape: The War against Women in Bosnia-Herzegovina, edited by Andrea Stiglmayer, translated by Marion Faber (1994), pages 174–79.

493 This passage is based on my interview with Melinda Stephenson in 2007 and subsequent communications. All names in this passage are pseudonyms.

496 For a journalistic discussion of evolutionary theories of rape, see Erica Goode, “What provokes a rapist to rape?,” New York Times, January 15, 2000.

496 The quotation from Jonathan A. Gottschall and Tiffani A. Gottschall occurs on page 10 of their paper “Are per-incident rape-pregnancy rates higher than per-incident consensual pregnancy rates?,” Human Nature: An Interdisciplinary Biosocial Perspective 14, no. 1 (March 1, 2003). In full: “We propose, based on this growing body of research, that all men—rapists and non-rapists—have the capacity to ‘read’ fecundity cues and pursue the most attractive/fecund women that they can. However, since rapists circumvent the problem of female choice, while non-rapists must confront it, it is plausible that the average instance of rape occurs with a more attractive/fecund woman than the average instance of consensual intercourse. Thus we propose that rapists target victims not only on the basis of age but based on a whole complement of physical and behavioral signals indicating the victim’s capacity to become pregnant and successfully carry a child to term.”

496 See Randy Thornhill and Craig T. Palmer, A Natural History of Rape: Biological Bases of Sexual Coercion (2000).

496 The quotation from Catharine MacKinnon (“Forced pregnancy is familiar . . .”) occurs on page 74 of her chapter “Turning rape into pornography: Postmodern genocide,” in Mass Rape: The War against Women in Bosnia-Herzegovina, edited by Andrea Stiglmayer, translated by Marion Faber (1994). It has been condensed. In full: “The rapes in the Serbian war of aggression against Bosnia-Herzegovina and Croatia are to everyday rape what the Holocaust was to everyday anti-Semitism: both like it and not like it at all, both contiguous with it and a whole new departure, a unique atrocity yet also a pinnacle moment in something that goes on all the time. As it does in this war, ethnic rape happens every day. As it is in this war, prostitution is forced on women every day; what is a brothel but a captive setting for organized serial rape? Forced pregnancy is familiar, too, beginning in rape and proceeding through the denial of abortions; this occurred during slavery and still happens to women who cannot afford abortions—who in the United States are disproportionately African-American or Latina.”

496 Susan Brownmiller’s statement “Men began to rape women when they discovered that sexual intercourse led to pregnancy” occurs on page 314 of Against Our Will (1975).

496 Mary P. Koss is cited in Erica Goode, “What provokes a rapist to rape? Scientists debate notion of an evolutionary drive,” New York Times, January 15, 2000.

496 The finding that women who have been raped before the age of eighteen are twice as likely as those who have not to be revictimized in adulthood is reported on page 39 of Patricia Tjaden and Nancy Thoennes, Full Report of the Prevalence, Incidence, and Consequences of Violence against Women: Findings from the National Violence against Women Survey (2000).

496 Interview with Lori Michaels, Clarabel Michaels, Ringo Smythe, and Bobby Michaels in 2007. All names in this section are pseudonyms.

500 The mother’s statement “My son will never know the details of his conception” occurred in a public discussion, “Children born of rape,” on the Adoption.com Forums, archived at http://web.archive.org/web/20070508215233/http://forums.adoption.com/single-parenting/128755-children-born-rape.html.

500 The quotation from Holly van Gulden about secret-keeping comes from her 1998 article “Talking with children about difficult history,” at http://www.family-source.com/cache/731451/idx/0.

500 The quotation from the man relieved that his mother was neither a “bad girl” nor a “tramp” occurs on page 103 of Victims and Victors: Speaking Out about Their Pregnancies, Abortions, and Children Resulting from Sexual Assault, edited by David C. Reardon, Julie Makimaa, and Amy Sobie (2000).

500 The story of and quotations from Lee Ezell come from the film Children of Rape (1994).

500 See Sherrie Eldridge, “Unexpected rejection: The subject no one wants to talk about,” Jewel Among Jewels Adoption News (Winter 1999).

501 This passage is based on my interview with Lisa Boynton in 2007. All names in this passage are pseudonyms.

503 The horrendous recommendation of euthanasia for children of rape occurred in a blog post by Jenifer Ann Cazador, “Lost souls of polygamy central,” The Wrecking Machine, April 2008, formerly at http://the-wrecking-machine.blogspot.com/2008/04/lost-souls-of-polygamy-central.html.

503 The quotation from Kathleen DeZeeuw occurs on page 79, and the quotation from Cindy Speltz occurs on pages 97–98, of Victims and Victors (2000). The second quotation has been condensed. From page 79: “I am not sorry, nor ever will be, that I kept and raised my son. The life I tried to snuff out was the very tool that was used to bring me to a place where I could forgive those involved in what happened to me. . . . Still, I regret the things I put my son through because of my unforgiveness of the man who raped me. It took me many years to come to grips with my own problem, which meant I had to quit blaming him for all my emotional problems. I had many years of analysis to try and overcome my deep-seated hatred and bitterness. . . . It was Patrick, my son, conceived in rape—whose life I had tried to snuff out—who taught me how to forgive. He was willing to forgive not only his biological father, but also me (for physically and verbally abusing him as a child). He kept telling me, ‘Mom, you need to forgive.’ Finally I listened to his most sound advice. It was then that I was able to go on with life and to forgive as I had been forgiven. Patrick was God’s tool to help me find peace.”

Pages 97–98: “My daughter’s identity is not to be found in the frail characteristics of her biological parents. Her identity is in being a child of God. Jennifer is the link that reconnected me to God. She was the gift that brought me out of fear and darkness into the Light of authentic Love.”

503 The quotation from the anti-abortionist conceived in rape and put up for adoption occurs on pages 148–49 of Victims and Victors (2000).

503 This passage is based on my interview with Tina Gordon in 2007. All names in this passage are pseudonyms.

506 See Stigma Inc., “Information,” at http://web.archive.org/web/20060221101659/www.stigmatized.org/information.htm.

507 This passage is based on my interview with Emily Barrett in 2008. All names in this passage are pseudonyms.

511 This paragraph relies on Diana E. H. Russell, Rape in Marriage (1990). The 14 percent statistic occurs on page xxxii, the story of the Burnhams on pages xvii–xviii.

512 The quotation from Louise McOrmond-Plummer (“The woman raped by her partner was routinely blamed”) comes from her article “My story of partner rape” (2006), http://www.aphroditewounded.org/loustory.html; see also Patricia Weiser Easteal and Louise McOrmond-Plummer, Real Rape, Real Pain: Help for Women Sexually Assaulted by Male Partners (2006).

512 This passage is based on my interview with Ashley Green in 2007. All names in this passage are pseudonyms.

516 The reference to “coerced childbearing as a weapon in the arsenal of power and control” occurs on page 27 of Anthony Lathrop, “Pregnancy resulting from rape,” Journal of Obstetric, Gynecologic & Neonatal Nursing 27, no. 1 (January 1998).

516 The quotation from the first woman coerced into bearing children (“He raped me to keep me pregnant all the time”) occurs on page 23 of Raquel Kennedy Bergen, Wife Rape: Understanding the Response of Survivors and Service Providers (1996); the quotation from the second (“They own you when you have a child by him”) occurs on page 219 of Jacquelyn C. Campbell et al., “The influence of abuse on pregnancy intention,” Women’s Health Issues 5, no. 4 (Winter 1995).

517 This passage is based on my interview with Mindy Woods and Larry Foster in 2007. All names in this passage are pseudonyms.

520 This passage is based on my interview with Barbara, Jeffrey, and Pauline Schmitz in 2007. All names in this passage are pseudonyms.

526 Statistics on numbers of war children can be found on page 7 of Kai Grieg, The War Children of the World (2001).

526 The quotation from Ruth Seifert (“The rape of women communicates from man to man . . .”) occurs on page 59 of her essay “War and rape: A preliminary analysis,” in Mass Rape: The War against Women in Bosnia-Herzegovina, edited by Andrea Stiglmayer, translated by Marion Faber (1994). It has been condensed. The passage in full: “In the context of war, rape can be considered the final symbolic expression of the humiliation of the male opponent. As experience teaches us, the myth of man as protector that is mobilised in most wars is really nothing more than a myth. There is by no means a cultural imperative to protect women from war and its consequences. This is not to say that this myth has no social effect and possesses no psychological reality for many men (and women). Neither do I mean to deny the possibility that isolated men do protect isolated women (just as isolated women protect isolated men). But in principle women are always laid open to the consequences of war. Furthermore, the rape of women carries an additional message: it communicates from man to man, so to speak, that the men around the women in question are not able to protect ‘their women.’ They are thus wounded in their masculinity and marked as incompetent. In the former Yugoslavia, this communicative function from man to man is clearly evident when buses with women in sixth, seventh or even eighth months of pregnancy were sent back over enemy lines, usually with cynical inscriptions on the vehicles regarding the children about to be born.”

526 Susan Brownmiller’s characterization of wartime rape as an “extracurricular battlefield” occurs on page 182 of her essay, “Making female bodies the battlefield,” in Mass Rape: The War against Women in Bosnia-Herzegovina, edited by Andrea Stiglmayer, translated by Marion Faber (1994). The passage in full (pages 181–82): “During World War II, when the Germans were on the march again, atrocious rapes were committed on the bodies of Russian and Jewish women in the occupied villages and cities while still more women were dragged to brothels or to death. When the tide reversed and the Soviet Army began advancing into German territory on the road to Berlin, it was the turn of German women to experience the use of their bodies as an extracurricular battlefield.”

526 Books consulted on the Rwandan genocide include Alison Liebhafsky Des Forges, “Leave None to Tell the Story”: Genocide in Rwanda (1999); Jean Hatzfeld, Machete Season: The Killers in Rwanda Speak (2005); Elizabeth Neuffer, The Key to My Neighbour’s House: Seeking Justice in Bosnia and Rwanda (2002); Binaifer Nowrojee, Shattered Lives: Sexual Violence during the Rwandan Genocide and Its Aftermath (1996); Philip Gourevitch, We Wish to Inform You That Tomorrow We Will Be Killed with Our Families: Stories from Rwanda (1999); and Johnathan Torgovnik, Intended Consequences: Rwandan Children Born of Rape (2009). For journalistic coverage, see Donatella Lorch, “Rape used as a weapon in Rwanda: Future grim for genocide orphans,” Houston Chronicle, May 15, 1995; Elizabeth Royte, “The outcasts,” New York Times Magazine, January 19, 1997; Lindsey Hilsum, “Rwanda’s time of rape returns to haunt thousands,” Guardian, February 26, 1995; Lindsey Hilsum, “Don’t abandon Rwandan women again,” New York Times, April 11, 2004; and Emily Wax, “Rwandans are struggling to love children of hate,” Washington Post, March 28, 2004.

526 The Rwandan proverb “A woman who is not yet battered is not a real woman” is reported on page 20 of Binaifer Nowrojee’s report for Human Rights Watch, Shattered Lives: Sexual Violence during the Rwandan Genocide and Its Aftermath (1996).

526 The role of Rwandan media in inciting genocide is discussed in Dina Temple-Raston’s remarkable book Justice on the Grass (Free Press, 2005). See also Russell Smith, “The impact of hate media in Rwanda,” BBC News, December 3, 2003. Also, in his remarkable PhD dissertation, “Propaganda and conflict: Theory and evidence from the Rwandan genocide” (Stockholm University, 2009), political economist David Yanagizawa found a direct correlation between hate radio and violence by analyzing locations of transmission towers and topographical impediments to transmission, and the locations and numbers of subsequent genocide prosecutions.

526 Statistics on wartime rapes in Rwanda are supported by the UN Office for the Coordination of Humanitarian Affairs news report “Our bodies, their battle ground: Gender-based violence in conflict zones,” IRIN News, September 1, 2004. Estimates of the numbers of wartime rapes and births come from the introduction by Marie Consolée Mukagendo, “The struggles of Rwandan women raising children born of rape,” in Johnathan Torgovnik’s photo essay, Intended Consequences: Rwandan Children Born of Rape (2009): “The struggles of Rwandan women raising children born of rape“: “While there is little information available on the real numbers of rape victims at the national level, a study in 2000 by Human Rights Watch estimated up to five hundred thousand women were raped systematically during the genocide. In Rwanda, abortion is illegal, but many women used more primitive methods to abort their pregnancies or traveled to neighboring Zaire (Congo) in order to obtain an abortion because they were unable to cope with the prospect of raising a child fathered by a militiaman. Many other women, however, had children in the aftermath of the genocide and are now raising them alone.

“The National Population Office of Rwanda estimated that the number of children born of forced impregnation to be between two and five thousand. However, according to information provided by victim groups, the number may actually range between ten and twenty-five thousand children. Rwanda is a heavily patriarchal society; so children are identified with the lineage of their fathers. This means that most members of society perceive the children of wartime rape as belonging to the enemy. They are often referred to as ‘les enfants mauvais souvenir’ (children of bad memories) or ‘enfants indesirés’ (children of hate) and others are named ‘little killers’ by their own mothers and by the community. As a consequence, often as soon as the mothers reveal the truth of their rape, they face rejection by their families and lose any support from the community, which harbors deep emotional scars from the genocide. So many of the women were girls during the genocide, and acknowledging the rapes, publicly or privately, can dash their future hopes of marriage. Josette, a mother to eleven-year-old Thomas, explains, ‘My uncle didn’t welcome me into his house. He asked me who was responsible for my pregnancy. I said it must be the militias since many of them had raped me. He said I shouldn’t enter his house carrying a baby of the Hutus and chased me away. I left, but I didn’t know where to go.’ These mothers and their children are simply not accepted into the community and struggle for support.

“. . .To date there has been no systematic effort to identify the children of rape or to evaluate their needs and the needs of their mothers specifically.”

527 See Padmasayee Papineni, “Children of bad memories,” Lancet 362, no. 9386 (September 6, 2003).

527 The phrase living legacy of a time of death comes from Emily Wax, “Rwandans are struggling to love children of hate,” Washington Post, March 28, 2004.

527 The quotation from Catherine Bonnet occurs on page 79 of Binaifer Nowrojee’s report Shattered Lives: Sexual Violence during the Rwandan Genocide and Its Aftermath (1996), citing to Bonnet’s paper, “Le viol des femmes survivantes du génocide du Rwanda,” in Rwanda: Un génocide du XXe siècle, edited by Raymond Verdier, Emmanuel Decaux, and Jean-Pierre Chrétien (1995), page 18. The Bonnet quote in full: “The psychopathy of pregnancies resulting from rape in Rwanda is the same as that which has been observed in France and in the former Yugoslavia: these pregnancies are rejected and concealed, often denied and discovered late. They are often accompanied by attempted self-induced abortions or violent fantasies against the child; indeed, even infanticide. Suicidal ideas are frequently present. Some women probably committed suicide without revealing the reason when they discovered that they had become pregnant by their rapist-tormentor.”

527 All quotations from Jean Damascene Ndayambaje come from my interview with him in 2004.

527 All quotations from Espérance Mukamana come from my interview with her in 2004.

527 The loaded names chosen by some women are cataloged in Emily Wax, “Rwandans are struggling to love children of hate,” Washington Post, March 28, 2004.

528 All quotations from Alphonsine Nyirahabimana come from my interview with her in 2004.

528 All quotations from Célestin Kalimba come from my interview with him in 2004.

528 All quotations from Marie Rose Matamura come from my interview with her in 2004.

529 General information sources on rape as a tool of war include Susan Brownmiller, Against Our Will (1975); Maria de Bruyn, Violence, Pregnancy and Abortion: Issues of Women’s Rights and Public Health (2003); and the Global Justice Center report The Right to an Abortion for Girls and Women Raped in Armed Conflict (2011). For further information on rape in specific conflicts noted in this passage, see Nayanika Mookherjee, “‘Remembering to forget’: Public secrecy and memory of sexual violence in the Bangladesh war of 1971,” Journal of the Royal Anthropological Institute 12, no. 2 (?June 2006); Martina Vandenburg and Kelly Askin, “Chechnya: Another battleground for the perpetration of gender based crimes,” Human Rights Review 2, no. 3 (2001); Michele L. Leiby, “Wartime sexual violence in Guatemala and Peru,” International Studies Quarterly 53, no. 2 (June 2009); “Comfort women,” Encyclopedia of Rape, pages 46–48; the Amnesty International report “Liberia: No impunity for rape” (2004); and Louise Taylor’s report for Human Rights Watch, “‘We’ll kill you if you cry’: Sexual violence in the Sierra Leone conflict” (2003).

529 The statement “These incidents of rape are clearly aimed to subjugate, humiliate, and terrorize the entire community, not just the women and girls raped by the militias” appears on page 5 of the Human Rights Watch report “Sexual violence and its consequences among displaced persons in Darfur and Chad (2005).

529 See “Rape of Nanking,” Encyclopedia of Rape, pages 194–96.

529 Rape as a weapon during the conflict in Bangladesh is discussed in Robert Trumball, “Dacca raising the status of women while aiding rape victims,” New York Times, May 12, 1972; Aubrey Menen, “The rapes of Bangladesh,” New York Times, July 23, 1972; and Susan Brownmiller, Against Our Will (1976), pages 78–86.

529 The quotation from the Kosovar husband (“If I were normal, I would keep the kid, accept my wife . . .”) comes from Helena Smith, “Rape victims’ babies pay the price of war,” Observer, April 16, 2000.

529 The quotation from the Bosnian rape survivor (“It was a hard birth . . .”) occurs on page 131 of Alexandra Stiglmayer, “The rapes in Bosnia-Herzegovina,” in Mass Rape: The War against Women in Bosnia-Herzegovina, edited by Andrea Stiglmayer, translated by Marion Faber (1994).

529 See Helena Smith, “Rape victims’ babies pay the price of war,” Observer, April 16, 2000.

530 This passage is based on my interview with Marianne Mukamana in 2004.

530 The quotation from the East Timorese rape survivor (“I was used like a horse by the Indonesian soldiers . . .”) occurs on page 337 of Susan Harris Rimmer, “‘Orphans’ or veterans?: Justice for children born of war in East Timor,” Texas International Law Journal 42, no. 2 (Spring 2007), citing to Galuh Wandita et al., “Learning to engender reparations in Timor-Leste: Reaching out to female victims,” in Engendering Reparations: Recognising and Compensating Women Victims of Human Rights Violations, edited by Ruth Rubio-Marín (2006).

530 The characterization of children of rape as a “symbol of the trauma the nation as a whole went through” occurs on page 16 of Elisabeth Rehn and Ellen Johnson Sirleaf’s report to UNIFEM, Women, War and Peace: The Independent Experts’ Assessment on the Impact of Armed Conflict on Women and Women’s Role in Peace-Building (2002).

531 The quotation from Zahra Ismail (“This creates a problem for ensuring fundamental social benefits for children . . .”) occurs on page 18 of her dissertation, “Emerging from the shadows: Finding a place for children born of war” (2008).

531 See Robert McKelvey, The Dust of Life: America’s Children Abandoned in Vietnam (1999).

531 The citizenship status of children conceived in rape during the Bosnian conflict is explored in Joana Daniel’s thesis, “No man’s child: The war rape orphans” (2003); and “Children born of war rape in Bosnia-Herzegovina and the Convention on the Rights of the Child,” in Born of War: Protecting Children of Sexual Violence Survivors in Conflict Zones, edited by R. Charli Carpenter (2007), pages 21–39; see also the UNICEF Innocenti Research Centre report, Birth Registration and Armed Conflict (2007).

531 The denial of citizenship to offspring of Kuwaiti women raped during the Iraqi occupation is discussed in Kathy Evans, “Kuwait’s rape children offer bitter reminder,” Guardian, July 29, 1993.

531 The quotations from Zahra Ismail about wartime-rape-conceived children as victims occur on pages 13–14 of her dissertation, “Emerging from the shadows: Finding a place for children born of war” (2008). The passage in full: “Children born of war are after all also, albeit secondary, victims of the rape, who are denied their basic rights based on biological origins. The status of children born of rape as rights bearers, victims of genocide, or as refugees of war has only been addressed on the periphery, and never as part of the forced pregnancy dialogue. This failure to connect the fate of rape victims with the fate of their children within legal discourse is both unsettling and surprising, especially in light of the widespread awareness of the plight of these children in the media during the aftermath of violence in the former Yugoslavia. However, by the time the War Crimes Tribunal and the International Criminal Court (ICC) started the debate on the issue of genocidal rape in the mid 1990’s, the inclusion of forced pregnancy as a war crime, and the issue of war rape children had dropped out of the media and out of the site of human rights activists and scholars.11 Thus following its consideration as a war crime and a severe breach of the Geneva Convention, forced pregnancy has so far been treated solely as a women’s issue, not giving children born of war any consideration. This not only led to their marginalization but also contributed to their being overlooked as victims, and later being somehow cast into the perpetrator camp.”

531 Pursuant to Article 7, part 1, of the UN Convention on the Rights of the Child (full text at http://www2.ohchr.org/english/law/crc.htm), every child “shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by his or her parents.”

531 R. Charli Carpenter discusses UK policy on the adoption of babies from the Balkans in her paper “War’s impact on children born of rape and sexual exploitation: Physical, economic and psychosocial dimensions” (presented at the University of Alberta, Edmonton, conference The Impact of War on Children, April 2005).

531 This passage is based on my interview with Marcelline Niyonsenga in 2004.

532 The quotation from Bishop Carlos Belo and Susan Harris Rimmer’s commentary occur on page 332 of her paper “‘Orphans’ or veterans?: Justice for children born of war in East Timor,” Texas International Law Journal 42, no. 2 (Spring 2007).

533 The technical name for the Helms Amendment is Section 104(f) of the Foreign Assistance Act of 1961, as amended. The full text of the amendment can be found at http://www.law.cornell.edu/uscode/text/22/2151b, and an extensive discussion of its ramifications appears in the Global Justice Center report The Right to an Abortion for Girls and Women Raped in Armed Conflict (2011).

533 See the Global Justice Center report The Right to an Abortion for Girls and Women Raped in Armed Conflict (2011), page 10: “The denial of abortion as cruel and inhuman treatment has also been recognized by the Human Rights Committee. In the case of KL v. Peru, the Committee concluded that the denial of abortion to a woman whose life was endangered by a pregnancy constituted a violation of Article 7 of the International Covenant on Civil and Political Rights, which prohibits torture and cruel and inhuman treatment.”

533 All quotations from Janet Benshoof come from my interview with her in 2011.

533 This passage is based on my interview with Alphonsine Mukamakuza in 2004.

534 The Rome Statute of the International Criminal Court was adopted July 17, 1998, and entered into force on July 1, 2002. For the full text, see United Nations, Treaty Series, vol. 2187, p. 3, http://treaties.un.org/pages/ViewDetails.aspx?src=TREATY&mtdsg_no=XVIII-10&chapter=18&lang=en; see also the website of the Rome Statute of the International Criminal Court, http://untreaty.un.org/cod/icc/index.html.

534 See International Criminal Tribunal for Rwanda, The prosecutor versus Jean-Paul Akayesu, Case No. ICTR-96-4-T, Judgment 688, September 2, 1998; a summary of the judgment can be found at http://www.uniurb.it/scipol/pretelli/9%20Akayesu.pdf.

534 A 2004 report by the Iraq Ministry of Women’s Affairs found that more than half of the four hundred rapes reported since the US invasion resulted in the murder of rape survivors by their families; see Yifat Susskind, “The murder of Du’a Aswad,” Madre, May 22, 2007.

534 The quotation from Susan Harris Rimmer occurs on page 324 of her paper “‘Orphans’ or veterans?: Justice for children born of war in East Timor,” Texas International Law Journal 42, no. 2 (Spring 2007). In full: “I aim to shift the current approach to children born of war in Timor from covert welfare assistance by the Catholic Church and NGOs, to a rights-based framework, in which the affected children would be publicly accepted as having valid claims before the Government, rather than seen as by-products of a crime or sin.”

534 The quotation from Jeanne Muliri Kabekatyo (“We want to make out of these children artisans of peace”) comes from Danielle Shapiro, “Mothers in Congo get help in raising children of rape,” Christian Science Monitor, May 9, 2010.

535 This passage is based on my interview with Christine Uwamahoro in 2004.

X: Crime

538 Popular overestimation of the deterrent effects of incarceration is discussed in Peter W. Greenwood et al., Diverting Children from a Life of Crime: Measuring Costs and Benefits (1996).

538 The quotation from Fight Crime: Invest in Kids (“Those on the front lines . . .”) occurs on page 2 of the organization’s position statement “Investments in children prevent crime and save money” (2003), http://www.fightcrime.org/wp-content/uploads/sites/default/files/reports/Cost-Bft%20Br%20FINAL%204-30-03.pdf.

538 For the meta-analysis of studies on the correlation between rehabilitation programs and recidivism, see Mark W. Lipsey and David B. Wilson, “Effective interventions for serious juvenile offenders: A synthesis of research,” on pages 313–66 of Serious and Violent Juvenile Offenders: Risk Factors and Successful Interventions, edited by Rolf Loeber and David P. Farrington (1998).

538 The quotation from the NIH on the futility of scare tactics to reduce youth crime occurs on page 7 of the report Preventing Violence and Related Health-Risking Social Behaviors in Adolescents (2004).

538 Joseph A. Califano’s reference to “colleges of criminality” occurs on page 20 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004).

538 Statistics on rates of rearrest of juveniles after release from prison occur on page 7 of Patrick A. Langan and David J. Levin’s report to the Department of Justice, “Recidivism of prisoners released in 1994” (2002).

539 Crime victims’ survivors’ lack of postexecution satisfaction is explored in Scott Vollum and Dennis R. Longmire, “Covictims of capital murder: Statements of victims’ family members and friends made at the time of execution,” Violence & Victims 22, no. 5 (October 2007); and Thomas J. Mowen and Ryan D. Schroeder, “Not in my name: An investigation of victims’ family clemency movements and court appointed closure,” Western Criminology Review 12, no. 1 (January 2011).

539 This passage is based on my interviews with Cora Nelson, Peter Makya, Jennifer Stiles, Mandy Stiles, Ethan Heinz, and Marcella Smith between 2003 and 2006 and subsequent communications. All names in this passage are pseudonyms.

543 Adolescent weapon-carrying was assessed in the National Longitudinal Study of Adolescent Health, with findings published in multiple reports; see, e.g., Robert W. Blum et al., “The effects of race/ethnicity, income, and family structure on adolescent risk behaviors,” American Journal of Public Health 90, no. 12 (December 2000); and John Hagan and Holly Foster, “Youth violence and the end of adolescence,” American Sociological Review 66 (December 2001). For a journalistic discussion of the study, see Laura Sessions’s article “New study questions teen risk factors,” Washington Post, November 30, 2000.

543 See Robert Agnew and Sandra Huguley, “Adolescent violence toward parents,” Journal of Marriage & the Family 51, no. 3 (August 1989); and Charles W. Peek, Judith L. Fischer, and Jeannie S. Kidwell, “Teenage violence toward parents: A neglected dimension of family violence,” Journal of Marriage & the Family 47 (1985).

543 Statistics on juvenile arrest rates occur on page 5 of Dean John Champion, The Juvenile Justice System: Delinquency, Processing, and the Law (2004).

543 Relative chances of apprehension of juvenile and adult suspects are discussed in Monique M. Matherne and Adrian Thomas, “Family environment as a predictor of adolescent delinquency,” Adolescence 36, no. 144 (Winter 2001).

543 Jennifer L. Truman, Criminal Victimization, 2010, Bureau of Justice Statistics Special Report NCJ 235508 (2011). See also statistics on referrals to court, incarceration, and probation on pages 29–57 of Charles Puzzanchera and Melissa Sickmund’s report to the US Department of Justice, Juvenile Court Statistics 2005 (2008); see also Charles Puzzanchera, Juvenile Arrests 2007 (2009).

543 The characterization of juvenile detention centers as “an extension of the principal’s office” occurs in Sara Rimer, “Unruly students facing arrest, not detention,” New York Times, January 4, 2004.

543 Statistics on the decline in juvenile murder arrests occur on page 1 of Charles Puzzanchera, Juvenile Arrests 2007 (2009).

544 Waivers are discussed in chapter 9 (pages 297–342) of Dean John Champion, The Juvenile Justice System: Delinquency, Processing, and the Law (2004).

544 For information on the expansion of the waiver system, see Juvenile Offenders and Victims: 2006 National Report (2006), pages 113–14 (“Traditionally, discretionary judicial waiver was the most common transfer mechanism. Beginning in the 1970s, however, state legislatures have changed laws to move juvenile offenders into criminal court based on age and/or offense seriousness without the case-specific consideration offered by the discretionary juvenile court judicial waiver process. State transfer provisions changed extensively in the 1990s. Since 1992, all states but Nebraska have changed their transfer statutes to make it easier for juveniles to be tried in criminal court. But the pace of such changes has slowed considerably. From 1992 through 1995, 40 states and the District of Columbia enacted or expanded transfer provisions. From 1998 through 2002, legislatures in 18 states enacted or expanded their transfer provisions. From 2003 through 2004, only 4 states made substantive changes in transfer provisions, and only 2 of those states expanded them.”); see also Melissa Sickmund, “Juveniles in court,” National Report Series Bulletin (June 2003), https://www.ncjrs.gov/html/ojjdp/195420/page4.html, page 4 (chart details statutes at the end of the 1999 legislative session: 46 states provided for discretionary judicial waiver; excerpt: “Nearly all states have expanded their transfer provisions recently. Traditionally, discretionary judicial waiver was the transfer mechanism on which most states relied. Beginning in the 1970s and continuing through the present, however, state legislatures have increasingly moved juvenile offenders into criminal court based on age and/or offense seriousness, without the case-specific consideration offered by the discretionary juvenile court judicial waiver process.

“State transfer provisions changed extensively in the 1990s. From 1992 through 1999, 49 states and the District of Columbia enacted or expanded their transfer provisions. Nebraska was the only exception. An increasing number of state legislatures have enacted mandatory waiver or exclusion statutes. Less common, then and now, are concurrent jurisdiction provisions.”).

544 The US Supreme Court decision outlawing the death penalty in juvenile cases occurred in Roper v. Simmons, 543 U.S. 551, decided March 1, 2005, available at http://www.supremecourt.gov/opinions/04pdf/03-633.pdf. For a press report on the case, see David Stout, “Supreme Court bars death penalty for juvenile killers,” New York Times, March 1, 2005. Statistics on the percentage of juveniles on death row prior to Roper v. Simmons come from page 187 of Dean John Champion, The Juvenile Justice System: Delinquency, Processing, and the Law (2004).

544 Authoritative modern sources on the history of juvenile crime and juvenile justice in the United States include Dean John Champion, The Juvenile Justice System: Delinquency, Processing, and the Law (2004); and Clemens Bartollas, Voices of Delinquency (2003). For a nineteenth-century perspective, see Bradford Kinney Pierce, A Half Century with Juvenile Delinquents: The New York House of Refuge and Its Times (1869).

The tragic story of Thomas Granger was told by William Bradford, governor of the Massachusetts Bay Colony, in his diary, Of Plymouth Plantation, 1620–1647, edited by Samuel Eliot Morison (1957), pages 320–21: “And after the time of the writing these things befell a very sad accident of the like foul nature in this government, this very year, which I shall now relate. There was a youth whose name was Thomas Granger. He was servant to an honest man of Duxbury, being about 16 or 17 years of age. (His father and mother lived at the same time at Scietuate.) He was this year detected of buggery, and indicted for the same with a mare, a cow, two goats, five sheep, two calves and a turkey. Horrible it is to mention, but the truth of the history requires it. He was the first discovered by one that accidentally saw his lewd practice towards the mare. (I forbear particulars.) Being upon it examined and committed, in the end he not only confessed the fact with that beast at that time, but sundry times before and at several times with all the rest of the forenamed in his indictment. And this his free confession was not only in private to the magistrates (though at first he strived to deny it) but to sundry, both ministers and others; and afterwards, upon his indictment, to the whole Court and jury; and confirmed it at his execution.

“And whereas some of the sheep could not so well be known by his description of them, others with them were brought before him and he declared which were they and which were not. And accordingly he was cast by the jury and condemned, and after executed about the 8th of September, 1642. A very sad spectacle it was. For first the mare and then the cow and the rest of the lesser cattle were killed before his face, according to the law, Leviticus xx.15; and then he himself was executed. The cattle were all cast into a great and large pit that was digged of purpose for them, and no use made of any part of them.

“Upon the examination of this person and also of a former that had made some sodomitical attempts upon another, it being demanded of them how they came first to the knowledge and practice of such wickedness, the one confessed he had long used it in old England; and this youth last spoken of said he was taught it by another that had heard of such things from some in England when he was there, and they kept cattle together. By which it appears how one wicked person may infect many, and what care all ought to have what servants they bring into their families.”

545 The quotation from the Society for the Prevention of Pauperism (“Here is one great school of vice and desperation . . .”) occurs on pages 37–39 of Bradford Kinney Pierce, A Half Century with Juvenile Delinquents: The New York House of Refuge and Its Time (1869); the phrase simple labor appears on page 62; a discussion of the organization’s proposals can be found on pages 62–74.

545 The quotation from Chicago judge Julian Mack (“The problem for determination by the judge . . .”) occurs on pages 119–20 of his article “The juvenile court,” Harvard Law Review 23 (1909). The passage in full: “The problem for determination by the judge is not, Has this boy or girl committed a specific wrong, but What is he, how has he become what he is, and what had best be done in his interest and in the interest of the state to save him from a downward career. It is apparent at once that the ordinary legal evidence in a criminal court is not the sort of evidence to be heard in such a proceeding. A thorough investigation, usually made by the probation officer, will give the court much information bearing on the heredity and environment of the child. This, of course, will be supplemented in every possible way; but this alone is not enough. The physical and mental condition of the child must be known, for the relation between physical defects and criminality is very close. It is, therefore, of the utmost importance that there be attached to the court, as has been done in a few cities, a child study department, where every child, before hearing, shall be subjected to a thorough psycho-physical examination. In hundreds of cases the discovery and remedy of defective eyesight or hearing or some slight surgical operation will effectuate a complete change in the character of the lad.”

545 The quotation from Judge Benjamin Lindsey (“Our laws against crime are as inapplicable to children as they would be to idiots”) occurs on page 133 of Ben Lindsey and Harvey O’Higgins, The Beast (1970), as cited in Rachel Aviv, “No remorse: Should a teenager be given a life sentence?,” New Yorker, January 2, 2012.

545 The full text of the Supreme Court decision In re Gault, 387 U.S. 1, decided May 15, 1967, can be found on the Cornell University Legal Information Institute website, http://www.law.cornell.edu/supct/html/historics/USSC_CR_0387_0001_ZS.html. The reference to “Kangaroo Court” occurs on pages 27–28 of the decision: “[I]t would be extraordinary if our Constitution did not require the procedural regularity and the exercise of care implied in the phrase ‘due process.’ Under our Constitution, the condition of being a boy does not justify a kangaroo court.”

545 The full text of the Juvenile Justice and Delinquency Prevention Act can be found on the US Department of Justice website, http://www.ojjdp.gov/about/ojjjjact.txt. For a discussion of the provisions of the act, see pages 36–39 of Dean John Champion, The Juvenile Justice System: Delinquency, Processing, and the Law (2004).

545 The US Department of Justice official’s lament about the “psychobabble of social workers” comes from Merrill Hartson, “Juvenile court system too soft on criminals, U.S. official says,” Associated Press, September 4, 1985.

545 The paucity of treatment programs for court-involved youth is discussed on page 7 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004).

546 See, for example, Rosemary Sarri and Jeffrey Shook, “Human rights and juvenile justice in the United States,” in Children’s Human Rights: Progress and Challenges for Children Worldwide, edited by Mark Ensalaco and Linda C. Majka (2005).

546 For a discussion of the study finding that only a third of adolescent defendants thought their attorneys were helpful, see page 126 of Thomas Grisso and Robert G. Schwartz, Youth on Trial: A Developmental Perspective on Juvenile Justice (2000); juvenile defendants’ understanding of the Miranda warning is discussed on page 114.

546 The quotation from Thomas Grisso and Robert G. Schwartz (“The adult-like procedures introduced by the left . . .”) occurs on page 31 of their book Youth on Trial: A Developmental Perspective on Juvenile Justice (2000).

546 For more information on brain development and delinquent behavior, see Daniel R. Weinberger, “A brain too young for good judgment,” New York Times, March 10, 2001; and Laurence Steinberg and Elizabeth Cauffman, “Maturity of judgment in adolescence: Psychosocial factors in adolescent decision making,” Law & Human Behavior 20, no. 3 (June 1996). Weinberger is director of the Clinical Brain Disorders Laboratory at the National Institutes of Health.

546 Statistics on the association of drug and alcohol intoxication and the commission of crimes come from page 11 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004); rates of drug and alcohol abuse among adolescent criminal defendants from page 2; rates of substance-abuse treatment from page 56. For more detail on the level of substance-abuse treatment in correctional facilities, see the HHS report Drug and Alcohol Treatment in Juvenile Correctional Facilities: The DASIS Report (2002).

547 This passage is based on my interview with Sophia and Josiah McFeely in 2004 and subsequent communications. All names in this passage are pseudonyms.

549 Numbers of adolescent defendants with psychiatric diagnoses come from Linda A. Teplin et al., “Psychiatric disorders in youth in juvenile detention,” Archives of General Psychiatry 59, no. 12 (2002); and page 35 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004).

549 The proportion of incarcerated adolescents with learning disabilities comes from page 5 of Ronald D. Stephens and June Lane Arnette, “From the courthouse to the schoolhouse: Making successful transitions,” OJJDP: Juvenile Justice Bulletin NCJ-178900 (2000).

549 For the study of “easy” and “difficult” babies and later court involvement, see Rolf Loeber and Dale F. Hay, “Developmental approaches to aggression and conduct problems,” on pages 488–515 of Development through Life: A Handbook for Clinicians, edited by Michael Rutter and Dale F. Hay (1994).

549 For the study on the relationship between youthful “troublesomeness” and adolescent offending, see David P. Farrington, “The development of offending and antisocial behaviour from childhood: Key findings from the Cambridge Study in Delinquent Development,” Journal of Child Psychology & Psychiatry 36, no. 6 (September 1995).

549 An increased risk for offending for those who start young is found in Richard Dembo et al., “Predictors of recidivism to a juvenile assessment center: A three year study,” Journal of Child & Adolescent Substance Abuse 7, no. 3 (1998); see also Patrick Tolan and Peter Thomas, “The implications of age of onset for delinquency risk II: Longitudinal data,” Journal of Abnormal Child Psychology 23, no. 2 (April 1995): 157–81.

549 The quotation from Carol Carothers (“It is hard to imagine a worse place . . .”) comes from her testimony “Juvenile detention centers: Are they warehousing children with mental illnesses?,” on behalf of the National Alliance on Mental Illness before the Governmental Affairs Committee, United States Senate on Juvenile Detention Centers, July 7, 2004. In full: “The sad truth in Maine and nearly every other state in our country is that youth with mental illnesses are being held in juvenile detention for the sole purpose of awaiting mental health treatment and services. It is hard to imagine a worse place to house a child that requires health-care treatment and services for their mental illness. Surely we would not dream of placing a child with another serious illness, like cancer for example, in a juvenile detention center to await a hospital bed or community based treatment. It is outrageous that we do this to children with mental illnesses, as young as 7 years old. This takes an enormous toll on the child and the family.”

550 This passage is based on my interview with Brianna Gandy in 2003. All names in this passage are pseudonyms.

551 This passage is based on my interview with Jackson Simpson, Alexa Simpson, and Jackson’s father in 2003. All names in this section are pseudonyms.

552 The description of hellish conditions at the Mississippi juvenile detention center comes from David M. Halbfinger, “Care of juvenile offenders in Mississippi is faulted,” New York Times, September 1, 2003.

552 The quotation describing filthy, inhumane conditions in a Mississippi detention center comes from the complaint filed in D.W. et al. v. Harrison County, Mississippi, Case 1:2009cv00267, US District Court for the Southern District of Mississippi (Complaint filed April 20, 2009; Memorandum of Agreement filed June 24, 2009); see also the Southern Poverty Law Center press release “SPLC sues Mississippi county to stop ‘shocking’ abuse of children at detention center,” April 20, 2009.

552 Stripping and isolation of adolescent female inmates is described in David Halbfinger, “Care of juvenile offenders in Mississippi is faulted,” New York Times, September 1, 2003.

552 “Blender meals” are described in John Broder, “Dismal California prisons hold juvenile offenders,” New York Times, February 15, 2004.

552 The characterization of California’s juvenile prisons as “a dysfunctional jumble of antiquated facilities” comes from John Broder, “Dismal California prisons hold juvenile offenders,” New York Times, February 15, 2004.

552 Conditions at the Nevada Youth Training Center are described in Ralph F. Boyd, Investigation of Nevada Youth Training Center, Elko, Nevada (2005), as cited on page 20 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004).

552 The death of a seventeen-year-old inmate and deplorable conditions at the Miami-Dade Regional Juvenile Detention Center are described in the Miami-Dade County Grand Jury report Investigation into the death of Omar Paisley and the Department of Juvenile Justice, Miami-Dade Regional Juvenile Detention Center, January 27, 2004.

552 The statement from Joseph Califano (“We have fifty-one different systems of juvenile injustice . . .”) occurs on page 20 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004).

553 All quotations from Home School staff and residents come from interviews and personal communications between 2003 and 2005, and subsequent communications.

553 See Stephen DiMenna’s website: http://www.stephendimenna.com/.

555 This passage is based on my interviews with Dashonte Malcolm, Audrey Malcolm, Bishop Forbes, Mother Forbes, and Darius Stewart between 2003 and 2007, and subsequent communications. All names in this passage are pseudonyms.

557 Comprehensive general resources on gangs include James C. Howell et al., “U.S. gang problem trends and seriousness,” National Gang Center Bulletin 6 (May 2011); and James C. Howell, Gangs in America’s Communities (2011); for specific background on the Bloods, see the Virginia Fusion Center, Bloods Street Gang Intelligence Report (2008).

559 See “Interview with Leslie Van Houten,” CNN Larry King Weekend, Cable News Network, June 29, 2002.

560 See Suzanne Daley’s interview with Aicha el-Wafi, mother of Zacarias Moussaoui, “Mysterious life of a suspect from France,” New York Times, September 21, 2001. Since that interview, Moussaoui’s mother has recognized and publicly acknowledged her inability to recognize his transformation into a terrorist; see Peter Wilkin’s interview “Mother of 9/11 conspirator: I was blind to son’s extremism,” Cable News Network, September 2, 2011.

560 This passage is based on my interview with Dan Patterson in 2004. All names in this passage are pseudonyms.

560 See Lionel Dahmer, A Father’s Story (1994).

561 The quotation from Lionel Dahmer occurs on pages 127–28 of A Father’s Story (1994). It has been condensed. In full: “And so, my life had become an exercise in avoidance and denial. I had grasped at every hope, evaded every unpleasant truth. In the months that followed, my conversations with Jeff continued on the same, anesthetized plane they’d been on from the time he was a teenage boy. We spoke, but we did not converse. I made suggestions. He accepted them. He gave excuses. I accepted them. It was as if we had agreed to speak only in half sentences, communicating only what it was safe to communicate, and never moving to penetrate the wall that had come to exist between us.

“Now, when I think of those final days, I see myself in a kind of mental crouch, half expecting some sudden blow, but hoping against hope that it would never hit. I had come to accept the wall that separated me from my son. I had even come to think of it not so much as a wall, but as a shield which both of us needed if we were to communicate at all. It was as if we had agreed to speak only of the most banal things, because each of us knew that there were other things which, if honestly confronted, would tear us both apart. We had tacitly agreed to severely limit the subjects about which we could talk. We would discuss only the most trivial things in life, and let all the more profound and troubling ones drop from our conversations. We would live in a world of shallow exchanges, and let everything else remain unsaid. This dreadful silence we called peace.”

561 See Rachel King, Capital Consequences: Families of the Condemned Tell Their Stories (2005). For a summary of King’s work and conclusions, see her article “The impact of capital punishment on families of defendants and murder victims,” Judicature 89, no. 5 (March–April 2006).

561 The story of Dave Herman and his family is told in chapter 7 of Rachel King, Capital Consequences (2005), pages 221–45. The quotations from Esther Herman (“I had two very active businesses . . .” and “Dave had been a good person . . .”) occur on pages 223 and 231. They have been condensed.

561 This passage is based on my interview with Noel Marsh, Felicity Tompkins, and Steve Tompkins in 2003. All names in this passage are pseudonyms.

563 Studies of aggression in monkeys include Maribeth Champoux et al., “Serotonin transporter gene polymorphism, differential early rearing, and behavior in rhesus monkey neonates,” Molecular Psychiatry 7, no. 10 (2002); and Allyson Bennett et al., “Early experience and serotonin transporter gene variation interact to influence primate CNS function,” Molecular Psychiatry 7, no. 1 (2002).

563 See Avshalom Caspi et al., “Role of genotype in the cycle of violence in maltreated children,” Science 297, no. 5582 (August 2002). For a general review of research in this area, see Terrie E. Moffitt, “Genetic and environmental influences on antisocial behaviors: Evidence from behavioral-genetic research,” Advances in Genetics 55 (2005).

564 The quotation about the benefits of “a positive family environment” occurs on page 457 of Karol L. Kumpfer and Rose Alvarado, “Family-strengthening approaches for the prevention of youth problem behaviors,” American Psychologist 58, nos. 6–7 (June–July 2003). It has been condensed. In full (citations omitted): “Tested causal models find that a positive family environment (e.g., positive parent-child relationships, parental supervision and consistent discipline, and communication of family values) is the major reason youth do not engage in delinquent or unhealthy behaviors. These protective family factors are even stronger predictors for minority youth and girls.”

564 The statement “The parental attachment factor explains delinquency” occurs on page 32 of Jill Leslie Rosenbaum, “Family dysfunction and female delinquency,” Crime & Delinquency 35, no. 1 (January 1989); see also Joseph H. Rankin and Roger Kern, “Parental attachments and delinquency,” Criminology 32, no. 4 (November 1994).

564 This passage is based on my interviews with Karina Lopez and Emma Lopez in 2003 and 2004 and subsequent communications. All names in this passage are true except for “Cesar Marengo,” which is a pseudonym.

567 The murder of Luis Alberto Anaya and the prosecution of José Monroy Vega, Juan Carlos Ortiz-Mendoza, and Ramiro Montoya Pineda were covered extensively in the Minneapolis Star Tribune; see, e.g., Paul Gustafson, “Gang member found not guilty of St. Paul killing,” May 6, 2004; “Doubts about witness lead to acquittal in murder case,” July 24, 2004; and “Gang member sentenced for shooting death of rival,” August 20, 2004. Sureños (also known as Sureños 13) is an alliance of Mexican-American street gangs that originated in Southern California during the 1970s and has since spread throughout the United States. In 2009, the Minnesota Metro Gang Strike Force estimated that Sureños 13 was the region’s fastest-growing gang, with 106 members residing in the Minneapolis/St. Paul area; see Metro Gang Strike Force, “2008 Annual Report” (2009).

568 Statistics on single-parent families come from pages 10–11 of Howard Snyder and Melissa Sickmund, Juvenile Offenders and Victims (2006); see also Stephen Demuth and Susan L. Brown, “Family structure, family processes, and adolescent delinquency: The significance of parental absence versus parental gender,” Journal of Research in Crime & Delinquency 41, no. 1 (February 2004).

568 This passage is based on my interview with Jamaal Carson and Breechelle Carson in 2003. All names in this passage are pseudonyms.

569 The quotation from John Bowlby (“comfortless and unpredictable, and they respond either by shrinking from it or doing battle with it”) occurs on page 208 of John Bowlby, Margery Fry, and Mary D. Salter Ainsworth, Separation: Anxiety and Anger, vol. 2: Attachment and Loss (1973). For further discussion of abuse and neglect as a contributing factor to delinquency, see Frank J. Elgar et al., “Attachment characteristics and behavioural problems in rural and urban juvenile delinquents,” Child Psychiatry & Human Development 34, no. 1 (Fall 2003). The increased incidence of crimes committed by abused and neglected children is reported on page 3 of Cathy Widom and Michael G. Maxfield, An Update on the “Cycle of Violence” (2001).

569 This passage is based on my interview with Huaj Kyuhyun in 2003. All names in this passage are pseudonyms.

570 For discussion of exposure to violence as a risk factor for delinquency, see Cathy Widom and Michael G. Maxfield, An Update on the “Cycle of Violence” (2001); Karol L. Kumpfer, Strengthening America’s Families (1999); Sally Preski and Deborah Shelton, “The role of contextual, child, and parent factors in predicting criminal outcomes in adolescence,” Issues in Mental Health Nursing 22 (March 2001); and Carolyn Hilarski, “Victimization history as a risk factor for conduct disorder behaviors,” Stress, Trauma & Crisis 7, no. 1 (January 2004).

570 For the report of the study finding increased risk of engaging in violent behavior in children exposed to violence, see Terence P. Thornberry, Violent Families and Youth Violence (1994); additionally, criminologist James C. Howell discusses and analyzes Thornberry’s study on pages 113–14 of Preventing and Reducing Juvenile Delinquency: A Comprehensive Framework (2003).

570 The quotation from Jess McDonald (“The Child Welfare System is a feeder system for the juvenile justice system”) occurs on page 32 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004).

570 This passage is based on my interview with Ryan Nordstrom and his parents in 2004. All names in this passage are pseudonyms.

570 At least one study has found an association between early exposure to pornography and offending: David L. Burton, George Stuart Leibowitz, and Alan Howard, “Comparison by crime type of juvenile delinquents on pornography exposure: The absence of relationships between exposure to pornography and sexual offense characteristics,” Journal of Forensic Nursing 6, no. 3 (September 2010).

570 David P. Farrington summarizes a major inquiry into youths’ high-risk behavior in “The development of offending and antisocial behaviour from childhood: Key findings from the Cambridge Study in Delinquent Development,” Journal of Child Psychology & Psychiatry 36, no. 6 (September 1995).

571 See Judith Rich Harris, The Nurture Assumption: Why Children Turn Out the Way They Do (1998), especially the discussion of “groupness” on page 128. The tendency of juveniles to commit crimes in groups is discussed on page 370 of Child Delinquents: Development, Intervention, and Service Needs, edited by Rolf Loeber and David P. Farrington (2001).

571 For discussion of the contribution of the social environment to juvenile delinquency, see Kenneth C. Land, “Influence of neighborhood, peer, and family context: Trajectories of delinquent/criminal offending across the life course” (2000).

571 Statistics on the percentage of juvenile crimes committed by females come from page 4 of Charles Puzzanchera, Juvenile Arrests 2007 (2009).

571 For further discussion of precursors to female offending, see Leslie D. Leve and Patricia Chamberlain, “Female juvenile offenders: Defining an early-onset pathway for delinquency,” Journal of Child & Family Studies 13, no. 4 (December 2004); and Jill Leslie Rosenbaum, “Family dysfunction and female delinquency,” Crime & Delinquency 35, no. 1 (January 1989).

571 Statistics on the incidence of childhood sexual abuse among female criminal defendants come from George Calhoun et al., “The neophyte female delinquent: A review of the literature,” Adolescence 28, no. 110 (Summer 1993); and Margaret A. Zahn et al., “Causes and correlates of girls’ delinquency,” US Department of Justice (April 2010).

571 Statistics on the percentage of chronic juvenile offenders who are gang members come from James C. Howell’s report to the US Office of Juvenile Justice and Delinquency Prevention Youth Gang Programs and Strategies (2000).

571 Statistics on gang membership come from the National Youth Gang Center, National Youth Gang Survey Analysis (2011), http://www.nationalgangcenter.gov/Survey-Analysis/Measuring-the-Extent-of-Gang-Problems (“The most recent figures provided by law enforcement are that approximately three out of every five gang members are adults.”)

571 This passage is based on my interviews with Krishna Mirador, Carol Malloy, and Raul Mirador from 2003 to 2009, and subsequent communications. All names in this passage are pseudonyms.

572 For the Indian court decision finding that Ananda Marga was the intended recipient of the arms drop in the Purulia arms drop case, see State v. Peter James Gifran von Kalkstein Bleach et al., Purulia arms dropping case, Sessions Trial No. 1, Calcutta Court of Session, judgment issued June 1997, http://www.cbi.gov.in/dop/judgements/padc.pdf. The case was extensively covered by the Times of India.

576 As Krishna noted, many gangs started out as neighborhood baseball teams; see Robert Chow, “Barrios’ rivalry began with sports, cars,” Orange County Register, August 6, 1990.

578 Website of the Ananda Marga center in La Limonada, Guatemala City: http://www.guatemala.crimsondawn.info/.

579 See Elizabeth Bishop, “Questions of Travel,” Questions of Travel (1965).

580 Vatos locos is Spanish for “crazy guys.”

582 This passage is based on my interview with Tyndall Wilkie in 2003. All names in this passage are pseudonyms.

582 This passage is based on the story of Mitt Ebbetts as recounted to me in 2004 by a member of staff at a juvenile facility. All names in this passage are pseudonyms.

583 An official study found that nearly half of Castington inmates anticipate difficulty finding work after release; see Her Majesty’s Young Offender Institution, Castington and Oswald Unit, “Summary of questionnaires and interviews,” February 16, 2010, at http://www.justice.gov.uk/downloads/publications/inspectorate-reports/hmipris/2010_CASTINGTON_YJB_survey_rps.pdf. In response, Berwick MP Alan Beith has advocated for increased provision of reentry counseling and services; see James Moore’s article “Acklington and Castington prisons may be privatised,” Journal, July 14, 2011.

584 The survey of juvenile caseworkers is described on page 387 of Rolf Loeber and David P. Farrington, Child Delinquents: Development, Intervention, and Service Needs (2001).

584 Figures on the cost of jailing juveniles come from page 16 of Peter W. Greenwood et al., RAND Corporation report Diverting Children from a Life of Crime: Measuring Costs and Benefits (1996), estimating $21,000/year; and page 32 of Karol Kumpfer, Strengthening America’s Families: Exemplary Parenting and Family Strategies for Delinquency Prevention (1999), estimating $34,000–$64,000/year.

584 For more information on prison programming and its role in reducing recidivism, see the discussion on pages 210–11 of James C. Howell, Preventing and Reducing Juvenile Delinquency (2003); Cole Barton et al., “Generalizing treatment effects of functional family therapy: Three replications,” American Journal of Family Therapy 13, no. 3 (Fall 1985); and Roger Przybylski’s report to the Colorado Division of Criminal Justice, What Works: Effective Recidivism Reduction and Risk-Focused Prevention Programs (2008).

584 The quotation from Joseph Califano (“Treatment and accountability . . .”) occurs on page 9 of the Columbia University National Center on Addiction and Substance Abuse report Criminal Neglect: Substance Abuse, Juvenile Justice and the Children Left Behind (2004).

584 The positive impact of family-based intervention is explored in William Shadish et al., “Effects of family and marital psychotherapies: A meta-analysis,” Journal of Consulting & Clinical Psychology 61, no. 6 (December 1993).

584 The quotation about the effectiveness of family and group interventions occurs on page 255 of Susan R. Woolfenden, Katrina Williams, and Jennifer K. Peat, “Family and parenting interventions for conduct disorder and delinquency: A meta-analysis of randomized controlled trials,” Archives of Disease in Childhood 86, no. 4 (April 2002).

584 The effectiveness of prenatal home visits in reducing juvenile crime is discussed on page 90 of the US surgeon general’s report Youth Violence (2001). For more information on preventive programs, see Peter W. Greenwood et al., Diverting Children from a Life of Crime: Measuring Costs and Benefit (1996).

585 Delinquency prevention programs are likened to “the dental model” in Robert Nix, “Preschool intervention programs and the process of changing children’s lives,” Prevention & Treatment 6, no. 1 (December 2003). In full: “The immunological model of intervention may be misguided, and a dental model may be more appropriate. Just as we expect to need regular visits to the dentist to prevent future cavities, we may need to provide on-going assessment and adaptive support to uphold intervention effects.”

585 The meaning of all of those acronyms:

BPT: Behavioral Parent Training

FFT: Functional Family Therapy

MST: Multisystemic Therapy

SFT: Structural Family Therapy

BSFT: Brief Structural Family Therapy

MFGI: Multiple Family Group Intervention

FAST: Families and Schools Together

FET: Family Effectiveness Training

TFC: Treatment Foster Care

These programs and others like them are reviewed in Patricia Chamberlain and Julie Gilbert Rosicky’s paper, “The effectiveness of family therapy in the treatment of adolescents with conduct disorders and delinquency,” Journal of Marital & Family Therapy 21, no. 4 (June 1995); and W. Jeff Hinton, Carl Sheperis, and Pat Sims’s “Family-based approaches to juvenile delinquency: A review of the literature,” Family Journal: Counseling & Therapy for Couples & Families 11, no. 2 (April 2003).

585 Recent publications by Alan Kazdin on the parenting of defiant children include Parent Management Training: Treatment for Oppositional, Aggressive, and Antisocial Behavior in Children and Adolescents (2005); and Alan E. Kazdin, P. L. Marciano, and M. Whitley, “The therapeutic alliance in cognitive-behavioral treatment of children referred for oppositional, aggressive, and antisocial behavior,” Journal of Consulting and Clinical Psychology 73, no. 4 (August 2005).

585 For the study concluding that behavioral-communication programs could cut recidivism in half, see Patrick Tolan et al., “Family therapy with delinquents: A critical review of the literature,” Family Processes 25, no. 4 (December 1986).

585 For the two studies finding significantly reduced recidivism among participants in family therapy, see William H. Quinn and David J. Van Dyke, “A multiple family group intervention for first-time juvenile offenders: Comparisons with probation and dropouts on recidivism,” Journal of Community Psychology 32, no. 2 (February 2004); and Cole Barton et al., “Generalizing treatment effects of functional family therapy: Three replications,” American Journal of Family Therapy 13, no. 3 (Fall 1985).

585 Statistics on the increased incidence of arrest for violent crimes in youth from families who had received no early intervention come from Arthur J. Reynolds et al., “Long-term effects of an early childhood intervention on educational achievement and juvenile arrest,” Journal of the American Medical Association 285, no. 18 (May 9, 2001). From the abstract: “Relative to the preschool comparison group and adjusted for several covariates, children who participated in the preschool intervention for 1 or 2 years had a higher rate of high school completion (49.7% vs 38.5%; P=.01); more years of completed education (10.6 vs 10.2; P=.03); and lower rates of juvenile arrest (16.9% vs 25.1%; P=.003), violent arrests (9.0% vs 15.3%; P=.002), and school dropout (46.7% vs 55.0%; P=.047).” Nine percent vs. 15.3 percent translates to a 70 percent difference.

Reports of the Chicago Longitudinal Study, which demonstrated the effectiveness of early intervention and family therapy in reducing risk of initial offending, include Arthur J. Reynolds, Judy A. Temple, and Suh-Ruu Ou, “School-based early intervention and child well-being in the Chicago Longitudinal Study,” Child Welfare 82, no. 5 (September–October 2003); Arthur J. Reynolds, Suh-Ruu Ou, and James W. Topitzes, “Paths of effects of early childhood intervention on educational attainment and delinquency: A confirmatory analysis of the Chicago Child-Parent Centers,” Child Development 75, no. 5 (September 2004); and Arthur J. Reynolds, “Promoting well being in children and youth: Findings from the Chicago Longitudinal Study,” Children & Youth Services Review 26, no. 1 (January 2004).

From Fight Crime: Invest in Kids: “Similar savings were found for Chicago’s federally-funded Child-Parent Centers which have served 100,000 three- and four-year-olds since 1967. Research shows that similar children from low-income neighborhoods were 70 percent more likely to have been arrested for a violent crimes by age 18 than those who attended the program. This program will prevent an estimated 33,000 crimes by the time the children already served reach the age of 18. Seven dollars were saved for every $1 invested in this program, of which taxpayers alone save almost $3.”

585 Meager implementation of family therapy by juvenile institutions was found in Karol L. Kumpfer and Rose Alvarado, “Family-strengthening approaches for the prevention of youth problem behaviors,” American Psychologist 58, nos. 6–7 (June–July 2003), page 457: “In the past 20 years, prevention researchers have developed and tested a number of effective parenting and family interventions; however, only about 10% of practitioners are implementing these family strengthening programs and only about 25% are implementing these with fidelity.”

585 For demonstrations of the cost savings resulting from expenditures on family education, see Lawrence J. Schweinhart, Helen V. Barnes, and David P. Weikart, Significant Benefits: The High/Scope Perry Preschool Study through Age 27 (1993). For documentation of even greater savings with later-stage intervention, see Robert Barnoski, Outcome Evaluation of Washington State’s Research-Based Programs for Juvenile Offenders (2004).

585 Criminologist Peter Greenwood compares costs of the “three strikes” law with parole and parent training in the RAND Corporation report Diverting Children from a Life of Crime: Measuring Costs and Benefits (1996); specific figures cited occur on page 25.

586 Estimates of the total cost of the failure to provide adequate preventive services come from page 6 of Lawrence J. Schweinhart et al., Lifetime Effects: The HighScope Perry Preschool Study through Age 40 (2005).

587 This passage is based on my interviews with Tom and Sue Klebold between 2005 and 2007, and subsequent communications. My sources on the Columbine tragedy include reports in the Denver Rocky Mountain News by Lynn Bartels, Dan Luzadder, and Kevin Vaughan (see the bibliography for all titles); David Cullen’s articles on Salon and his subsequent book, Columbine (2009); coverage in the New York Times by David Brooks and Judith Warner; Nancy Gibbs and Timothy Roche, “The Columbine tapes,” Time, December 20, 1999; Michael Paterniti, “Columbine never sleeps,” GQ, April 2004; Brooks Brown and Rob Merritt, No Easy Answers: The Truth behind Death at Columbine (2002); Ralph Larkin, Comprehending Columbine (2007); and Susan Klebold, “I will never know why,” O, The Oprah Magazine, November 2009.

588 Nathan Dykeman said of the Klebolds, “They’re in a glass cage,” in an ABC Good Morning America interview, “More insight on Dylan Klebold,” broadcast April 30, 1999.

XI: Transgender

599 The quotation from Richard C. Friedman (“. . . ‘Don’t worry—it won’t happen to you’”) comes from personal communication in 2011.

599 Amy Bloom’s observation (“Male is not gay or straight; it’s male . . .”) occurs on page 18 of her book Normal: Transsexual CEOs, Crossdressing Cops, and Hermaphrodites with Attitude (2002).

599 The quotations from Jan Morris (“Transsexualism is not a sexual mode or preference . . .” and “My inner uncertainty . . .”) occur on pages 8 and 7 of her memoir, Conundrum (2006). Page 8: “Whatever the cause, there are thousands of people, perhaps hundreds of thousands, suffering from the condition today. It has recently been given the name trans-sexualism, and in its classic form is as distinct from transvestism as it is from homosexuality. Both transvestites and homosexuals sometimes suppose they would be happier if they could change their sex, but they are generally mistaken. The transvestite gains his gratification specifically from wearing the clothes of the opposite sex, and would sacrifice his pleasures by joining that sex: the homosexual, by definition, prefers to make love with others of is own sort, and would only alienate himself and them by changing. Trans-sexualism is something different in kind. It is not a sexual mode or preference. It is not an act of sex at all. It a passionate, lifelong, ineradicable conviction, and no true transsexual has ever been disabused of it.”

From page 7: “This was a bewilderment that would never leave me, and I see it now as the developing core of my life’s dilemma. If my landscapes were Millais or Holman Hunt, my introspections were pure Turner, as though my inner uncertainty could be represented in swirls and clouds of colour, a haze inside me. I did not know exactly where it was—in my head, in my heart, in my loins, in my dreams. Nor did I know whether to be ashamed of it, proud of it, grateful for it, resentful of it. Sometimes I thought I would be happier without it, sometimes I felt it must be essential to my being. Perhaps one day, when I grew up, I would be as solid as other people appeared to be: but is perhaps I was meant always to be a creature of wisp or spindrift, loitering in this inconsequential way almost as though I were intangible.”

599 These definitions, commonly accepted though occasionally debated, are cataloged on pages 4–6 of Stephanie Brill and Rachel Pepper, The Transgender Child: A Handbook for Families and Professionals (2008).

600 The quotation from Aiden Key (“My gender is who I am; my sexuality is who I bounce it off of??”) comes from my interview with him in 2009.

600 The quotation from the mother (“She’s four—I don’t think she’s got sexual desires yet”) comes from a personal interview in 2009.

600 See Richard Green, The “Sissy Boy Syndrome” and the Development of Homosexuality (1987).

601 My sources on ENDA and NGLTF advocacy include David Herszenhorn, “House approves broad protections for gay workers,” New York Times, November 8, 2007; and Rea Carey’s November 5, 2009, testimony before the Senate Committee on Health, Education, Labor, and Pensions. (I am a member of the Task Force board of directors, which I joined after I began researching this chapter.)

601 Diagnostic criteria for gender identity disorder appear on pages 576–80 of the Diagnostic and Statistical Manual of Mental Disorders, DSM-IV-TR, 4th ed. (2000).

601 Stephanie Brill and Rachel Pepper discuss the emergence of gender-stereotypical behavior in chapter 3 (pages 61–72) of The Transgender Child (2008).

601 Unless otherwise specified, all quotations from Stephanie Brill come from my interviews with her in 2009 and subsequent communications.

602 See Simona Giordano, “Lives in a chiaroscuro: Should we suspend the puberty of children with gender identity disorder?,” Journal of Medical Ethics 34, no. 8 (August 2008).

602 “Official” statistics on incidence of gender reassignment surgery appear on page 579 of the Diagnostic and Statistical Manual of Mental Disorders, DSM-IV-TR (2000). I have applied those proportions to American population estimates.

602 Lynn Conway offers her analysis of transgender population statistics in her essay “The numbers don’t add; transsexual prevalence,” GID Reform Advocates (2008), http://gidreform.org/gid30285.html.

602 The quotation from Barbara Walters (“what’s between their legs doesn’t match what’s between their ears”) comes from her ABC News report “Transgender children face unique challenges,” 20/20, April 27, 2007.

602 The National Center for Transgender Equality estimates that between .25 percent and 1 percent of the population is transsexual; see page 1 of the organization’s brochure “Understanding Transgender” (2009).

603 The quotation from Holly Devor occurs on page xxvi of FTM: Female-to-Male Transsexuals in Society (1997).

603 The word cisgender is new enough that it still awaits a place in the Oxford English Dictionary, but notable enough to have its own Wikipedia page (http://en.wikipedia.org/wiki/Cisgender); a 1991 article by German sexologist Volkmar Sigusch featured the neologism zissexuelle, and cisgender can be found in Usenet posts as far back as 1994.

603 This passage is based on my interview with Venessia, Joseph, Josie, and Jade Romero in 2009 and subsequent communications.

604 TransYouth Family Allies website: http://imatyfa.org/. (I am a member of the TYFA board of directors, which I joined after I began researching this chapter.)

606 Josie agreed to be profiled in the 2010 National Geographic documentary Sex, Lies and Gender and is featured in Stephanie Innes, “Meet Josie, 9: No secret she’s transgender,” Arizona Star, July 25, 2010.

607 A recent study has established that of the 4,508 genes actively transcribed in the mouse brain, 257 are more highly expressed in males and 355 in females; see Xia Yang et al., “Tissue-specific expression and regulation of sexually dimorphic genes in mice,” Genome Research 16, no. 8 (August 2006). These numbers are far greater than the numbers of genes involved in the differentiation of the gonads. Given the increased size and complexity of the human brain, it is likely that even larger numbers of genes are associated with sexually dimorphic processes other than reproduction, including behavior and disposition. For a useful review of current research on genetic and epigenetic contributions to sex differences in behavior, see Irfan A. Qureshi and Mark F. Mehler, “Genetic and epigenetic underpinnings of sex differences in the brain and in neurological and psychiatric disease susceptibility,” Progress in Brain Research 186 (2010). For further discussion of genetic and biological contributions to gender identity, see Louis Gooren, “The biology of human psychosexual differentiation,” Hormones & Behavior 50 (2006): 589–601; Dick F. Swaab, “Sexual differentiation of the brain and behavior,” Best Practice & Research Clinical Endocrinology & Metabolism 21, no. 3 (September 2007); and Lauren Hare et al., “Androgen receptor repeat length polymorphism associated with male-to-female transsexualism,” Biological Psychiatry 65, no. 1 (?January 1, 2009).

607 Unless otherwise specified, all quotations from Norman Spack come from my interview with him in 2009.

607 The possible influence of DES on development of gender dysphoria is discussed on pages 226–71 of Deborah Rudacille, The Riddle of Gender: Science, Activism and Transgender Rights (2005); the survey is described on page 17.

607 For more information on endocrine disruptors and differences in gendered behavior, see David Crews and John A. McLachlan, “Epigenetics, evolution, endocrine disruption, health, and disease,” Endocrinology 147, no. 6 (June 2006). Nicholas Kristof’s reports on the subject include “It’s time to learn from frogs,” New York Times, June 27, 2009; and “Chemicals and our health,” New York Times, July 16, 2009.

608 The quotation from Georges Canguilhem (“Diversity is not disease; the anomalous is not the pathological”) occurs on page 137 of his book The Normal and the Pathological (1991).

608 Diagnostic criteria for gender identity disorder appear on pages 576–80 of the Diagnostic and Statistical Manual of Mental Disorders, DSM-IV-TR, 4th ed. (2000). For in-depth discussion of gender-atypical behaviors common to children with GID, see Kenneth J. Zucker and Susan J. Bradley, Gender Identity Disorder and Psychosexual Problems in Children and Adolescents (1995); and the chapter “Childhood, interrupted,” on pages 192–225 of Deborah Rudacille, The Riddle of Gender (2005).

608 Heino Meyer-Bahlburg analyzes the statistical variance of children with GID from gender-typical behavior in his paper “Gender identity disorder of childhood: Introduction,” Journal of the American Academy of Child Psychiatry 24, no. 6 (November 1985).

608 Figures for the percentage of children with GID whose cross-gender identification persists into adolescence are based on the findings in Richard Green, The “Sissy Boy Syndrome” and the Development of Homosexuality (1987). Although Green’s study is twenty-five years old, it is cited as rigorous and relevant in nearly every paper that mentions the subject of persistence of GID into adolescence. The general principle that most children with early GID do not transition later on is supported by more recent work as well; see Kelley D. Drummond et al., “A follow-up study of girls with gender identity disorder,” Developmental Psychology 44, no. 1 (January 2008). From the abstract: “This study provided information on the natural histories of 25 girls with gender identity disorder (GID). Standardized assessment data in childhood (mean age, 8.88 years; range, 3–12 years); and at follow-up (mean age, 23.24 years; range, 15–36 years) were used to evaluate gender identity and sexual orientation. At the assessment in childhood, 60% of the girls met the Diagnostic and Statistical Manual of Mental Disorders criteria for GID, and 40% were subthreshold for the diagnosis. At follow-up, 3 participants (12%) were judged to have GID or gender dysphoria. Regarding sexual orientation, 8 participants (32%) were classified as bisexual/homosexual in fantasy, and 6 (24%) were classified as bisexual/homosexual in behavior. The remaining participants were classified as either heterosexual or asexual.” See also M. S. Wallien and Peggy T. Cohen-Kettenis, “Psychosexual outcome of gender-dysphoric children,” Journal of the American Academy of Child & Adolescent Psychiatry 47, no. 12 (December 2008). To wit: “Results: At follow-up, 30% of the 77 participants (19 boys and 4 girls) did not respond to our recruiting letter or were not traceable; 27% (12 boys and 9 girls) were still gender dysphoric (persistence group), and 43% (desistance group: 28 boys and 5 girls) were no longer gender dysphoric. Both boys and girls in the persistence group were more extremely cross-gendered in behavior and feelings and were more likely to fulfill gender identity disorder (GID) criteria in childhood than the children in the other two groups. At follow-up, nearly all male and female participants in the persistence group reported having a homosexual or bisexual sexual orientation. In the desistance group, all of the girls and half of the boys reported having a heterosexual orientation. The other half of the boys in the desistance group had a homosexual or bisexual sexual orientation.”

609 The quotation from Kelly Winters (“Behaviors that would be ordinary or even exemplary . . .”) comes from her essay “Issues of GID diagnosis for transsexual women and men” (2007).

609 Gerald Mallon and Teresa DeCrescenzo refer to “the sports corrective” and “the etiquette corrective” on page 58 of Social Services with Transgendered Youth (1999); and on page 230 of their article “Transgender children and youth: A child welfare practice perspective,” Child Welfare 85, no. 2 (March–April 2006). In full: “Gender variant boys may be mercilessly teased for not being rough-and-tumble, they may be frequently assumed to be gay by those adults who are ill-informed, and some are moved toward what the authors term, ‘the sports corrective.’ They are pushed into organized sports teams as if participation in such activities will correct their gender nonconformity.

“Gender variant girls are also verbally harassed for being too much like a boy and not enough like a girl. Although other girls seldom wear dresses nowadays, gender variant girls always are confronted by both peers and adults who try to enroll them in what the authors term, “the etiquette corrective.” Turn them from tomboys into ladies and everything will be all right. It seldom, if ever, works for them, and only adds to the pain and the self-blame.”

609 The quotation from Diane Ehrensaft (“The mental health profession has been consistently doing harm . . .”) comes from Lois Wingerson, “Gender identity disorder: Has accepted practice caused harm?,” Psychiatric Times, May 19, 2009.

609 Deborah Rudacille’s observation about GID (“The diagnosis legitimizes the range of hormonal and surgical interventions . . .”) occurs on page 216 of The Riddle of Gender (2005).

609 The quotation from William Narrow (“The harm of retention is stigma . . .”) comes from Susan Jeffrey, “APA 2009: DSM-V on track for 2019, but difficult decisions lie ahead,” Medscape Medical News, May 26, 2009.

610 Although gender reassignment surgery generally remains ineligible for insurance reimbursement, in November 2011 the Internal Revenue Service dropped its opposition to a 2010 Tax Court ruling allowing a federal tax deduction; see Jonathan Berr, “Sex change surgery is now tax deductible,” Time, November 10, 2011.

610 All quotations from Michele Angello come from my interview with her in 2009 and subsequent communications.

610 See “AMA policy regarding sexual orientation” (2007), http://www.ama-assn.org/ama/pub/about-ama/our-people/member-groups-sections/glbt-advisory-committee/ama-policy-regarding-sexual-orientation.page.

610 The quotation from Edgardo Menvielle (“The goal is for the child to be well adjusted . . .”) comes from Patricia Leigh Brown, “Supporting boys or girls when the line isn’t clear,” New York Times, December 2, 2006. Menvielle is author of “Parents struggling with their child’s gender issues,” Brown University’s Child & Adolescent Behavior Letter 20, no. 7 (July 2004); and coauthor with Ellen Perrin and Catherine Tuerk of “To the beat of a different drummer: The gender-variant child,” Contemporary Pediatrics 22, no.2 (May 2005).

610 The characterization of Peggy Cohen-Kettenis’s work occurs on page 29 of Alice Dreger, “Gender identity disorder in childhood: Inconclusive advice to parents,” Hastings Center Report 39, no. 1 (January–February 2009).

611 The quotations from Aristotle (“the single cause” as to “why the man is man or the musician musical” is simply “because each thing is inseparable from itself??”) occur in Metaphysics, Book VII, pt. 17, on page 311 of A New Aristotle Reader (1987). In full: “Let us state what, i.e. what kind of thing, substance should be said to be, taking once more another starting-point; for perhaps from this we shall get a clear view also of that substance which exists apart from sensible substances. Since, then, substance is a principle and a cause, let us pursue it from this starting-point. The ‘why’ is always sought in this form—’why does one thing attach to some other?’ For to inquire why the musical man is a musical man, is either to inquire—as we have said why the man is musical, or it is something else. Now ‘why a thing is itself’ is a meaningless inquiry (for [to give meaning to the question ‘why’] the fact or the existence of the thing must already be evident—e.g. that the moon is eclipsed—but the fact that a thing is itself is the single reason and the single cause to be given in answer to all such questions as ‘why the man is man, or the musician musical,’ unless one were to answer ‘because each thing is inseparable from itself, and its being one just meant this’; this, however, is common to all things and is a short and easy way with the question). But we can inquire why man is an animal of such and such a nature. This, then, is plain, that we are not inquiring why he who is a man is a man. We are inquiring, then, why something is predicable of something (that it is predicable must be clear; for if not, the inquiry is an inquiry into nothing). E.g. why does it thunder? This is the same as ‘why is sound produced in the clouds?’ Thus the inquiry is about the predication of one thing of another. And why are these things, i.e. bricks and stones, a house? Plainly we are seeking the cause. And this is the essence (to speak abstractly), which in some cases is the end, e.g. perhaps in the case of a house or a bed, and in some cases is the first mover; for this also is a cause. But while the efficient cause is sought in the case of genesis and destruction, the final cause is sought in the case of being also.”

611 John Locke’s statement “a man is a man” occurs in “Mr. Locke’s reply to the Bishop of Worcester,” in The Works of John Locke, Esq., in Three Volumes, vol. 1 (1727), page 419.

611 This passage is based on my interviews with Bettina and Greg Verdi in 2009 and subsequent communications. All names in this passage are pseudonyms.

613 The quotations in these two paragraphs from the two parents of trans people and the trans son of one of them come from personal interviews conducted between 2007 and 2010.

614 See Richard Green and John Money, Transsexualism and Sex Reassignment (1969). Money first publicly referred to the “John/Joan” case in Man and Woman, Boy and Girl (1972).

614 David Reimer told his story to John Colapinto, who published it first as “The true story of John/Joan,” Rolling Stone, December 11, 1997; and three years later in As Nature Made Him: The Boy Who Was Raised as a Girl (2000). Colapinto commented on Reimer’s death in “Gender gap: What were the real reasons behind David Reimer’s suicide?,” Slate, June 3, 2004.

614 For reports of the Johns Hopkins study, see William G. Reiner and John P. Gearhart, “Discordant sexual identity in some genetic males with cloacal exstrophy assigned to female sex at birth,” New England Journal of Medicine 350, no. 4 (January 22, 2004); and William G. Reiner, “Gender identity and sex-of-rearing in children with disorders of sexual differentiation,” Journal of Pediatric Endocrinology & Metabolism 18, no. 6 (June 2005).

615 The quotation from William G. Reiner (“These children demonstrate . . .”) comes from a Johns Hopkins University press release, “Hopkins research shows nature, not nurture, determines gender,” May 12, 2000.

615 For the UCLA study of effeminate boys, see George Rekers, O. Ivar Lovaas, and B. Low, “Behavioral treatment of deviant sex role behaviors in a male child,” Journal of Applied Behavioral Analysis 7 (1974); and Richard Green, The “Sissy Boy Syndrome” and the Development of Homosexuality (1987).

615 The incident that ended George Rekers’s public career as an academic standard-bearer against homosexuality was first reported by Penn Bullock and Brandon K. Thorp in “Christian right leader George Rekers takes vacation with ‘rent boy,’Miami New Times, May 4, 2010.

615 The quotation from Kirk Murphy’s sister comes from Scott Bronstein and Jesse Joseph’s report for Cable News Network, “Therapy to change ‘feminine’ boy created a troubled man, family says,” broadcast June 10, 2011.

615 See Phyllis Burke, Gender Shock: Exploding the Myths of Male and Female (1996).

616 This passage is based on my interview with Tony Ferraiolo and Anne Ferraiolo in 2008 and subsequent communications.

619 Jim Collins Foundation website: http://jimcollinsfoundation.org.

619 Information on the amounts of cross-sex hormones required to effect transition come from my interview with Norman Spack in 2009. For a detailed discussion of hormone treatment, see Wylie C. Hembree et al., “Endocrine treatment of transsexual persons: An Endocrine Society clinical practice guideline,” Journal of Clinical Endocrinology & Metabolism 94, no. 9 (September 2009); and Louis J. Gooren, Erik J. Giltay, and Mathijs C. Bunck, “Long-term treatment of transsexuals with cross-sex hormones: Extensive personal experience,” Journal of Clinical Endocrinology & Metabolism 93, no. 1 (January 2008). From the abstract: “The optimal hormonal therapy for transsexual patients is not known. The physical and hormonal characteristics of 38 noncastrate male-to-female transsexuals and 14 noncastrate female-to-male transsexuals have been measured before and/or during therapy with various forms and dosages of hormonal therapy. All patients were hormonally and physically normal prior to therapy. Ethinyl estradiol was superior to conjugated estrogen in suppression of testosterone and gonadotropins but equal in effecting breast growth. The changes in physical and hormonal characteristics were the same for 0.1 mg/d and 0.5 mg/d of ethinyl estradiol. The female-to-male transsexuals were well managed with a dose of intramuscular testosterone cypionate of 400 mg/month, usually given 200 mg every two weeks. The maximal clitoral length reached was usually 4 cm. Higher doses of testosterone did not further increase clitoral length or suppression of gonadotropins; lower doses did not suppress the gonadotropins. Based on the information found in this study, we recommend 0.1 mg/d of ethinyl estradiol for the noncastrate male-to-female transsexual and 200 mg of intramuscular testosterone cypionate every two weeks for the noncastrate female-to-male transsexual.”

620 See World Professional Association for Transgender Health, Harry Benjamin International Gender Dysphoria Association’s Standards of Care for Gender Identity Disorders, 6th version (2001).

620 The various surgeries associated with gender reassignment are described in exquisite detail in the chapter “Medical and surgical options,” on pages 196–211, of Mildred L. Brown and Chloe Ann Rounsley, True Selves: Understanding Transsexualism (1996). See also TS Roadmap, http://www.tsroadmap.com/physical/hair/zapidx.html: “How Long Will Electrolysis Take? Clearing typical transsexual women’s facial hair generally takes about 100 to 400 hours of treatment time (some need even more, some less). This is spread out over approximately one to four years (some need even more, some less). Many variables affect this, and these numbers are based on anecdotal data rather than survey results.

“How Much Does Electrolysis Cost? Electrolysis usually costs about $25 to $150 an hour for treatment (some pay even more, some less). You should plan on spending $25 to $250 a week (some pay even more, some less), tapering off over time, with a total cost to clear a face between $2,000 and $20,000 (some pay even more, some less). Many variables also affect this.”

621 For a scholarly source on hormone blockers, see Norman Spack, “An endocrine perspective on the care of transgender adolescents,” Journal of Gay & Lesbian Mental Health 13, no. 4 (October 2009). News coverage of the subject includes Lauren Smiley, “Girl/boy interrupted,” SF Weekly, July 11, 2007; and Hanna Rosin, “A boy’s life,” Atlantic Monthly, November 2008.

621 Follow-up studies of the Dutch cohort include Peggy T. Cohen-Kettenis and Stephanie H. van Goozen, “Sex reassignment of adolescent transsexuals: A follow-up study,” Journal of the American Academy of Child & Adolescent Psychiatry 36, no. 2 (February 1997); Yolanda L. Smith, Stephanie H. van Goozen, and Peggy T. Cohen-Kettenis, “Adolescents with gender identity disorder who were accepted or rejected for sex reassignment surgery: A prospective follow-up study,” Journal of the American Academy of Child & Adolescent Psychiatry 40 (2001); and Yolanda L. Smith et al., “Sex reassignment: Outcomes and predictors of treatment for adolescent and adult transsexuals,” Psychological Medicine 35 (2005). For a handy summary of this work, see Peggy Cohen-Kettenis, H. A. Delemarre–van de Waal, and L. J. Gooren, “The treatment of adolescent transsexuals: Changing insights,” Journal of Sexual Medicine 5, no. 8 (August 2008).

622 UK policy on hormone-blocking therapy is discussed in Simona Giordano, “Lives in a chiaroscuro: Should we suspend the puberty of children with gender identity disorder?,” Journal of Medical Ethics 34, no. 8 (August 2008); Naomi Coleman, “Boys will be girls,” Guardian, August 20, 2003; and Viv Groskop, “My body is wrong,” Guardian, August 14, 2008.

622 Domenico Di Ceglie reports that 20 percent of his patients choose not to complete gender reassignment in Lauren Smiley, “Girl/boy interrupted,” SF Weekly, July 11, 2007. Di Ceglie’s papers and books include A Stranger in My Own Body: Atypical Gender Identity Development and Mental Health (1988); Gender Identity Disorders in Children and Adolescents: Guidance for Management (1998); and “Gender identity disorder in young people,” Advances in Psychiatric Treatment 6 (2000).

622 All quotations from Shannon Minter come from my interview with him in 2009 and subsequent communications.

623 This passage is based on my interview with Jennifer Finney Boylan and Hildegarde Boylan in 2007. I have, additionally, drawn some passages from Jennifer Finney Boylan, She’s Not There: A Life in Two Genders (2003).

625 Alice Domurat Dreger’s lament about early transition and sex-role rigidity comes from her article “Trans advocates (at least where genderqueer kids are concerned),” Stranger (The Queer Issue: You’re Doing It Wrong), June 21, 2011.

626 The quotation from Just Evelyn (“I knew his life would be difficult and sad . . .”) occurs on page 6 of her book, Mom, I Need to Be a Girl (1998).

626 The quotation from Aleshia Brevard (“I consciously tried to create a boy child . . .”) occurs in her 2001 essay, “The woman I was not born to be,” on pages 242–43 of Sexual Metamorphosis: An Anthology of Transsexual Memoirs, edited by Jonathan Ames (2005).

626 Cris Beam’s account of “Ariel” occurs on page 77 of Transparent: Love, Family, and Living the T with Transgendered Teenagers (2007).

626 This passage is based on my interview with Hendrik and Alexia Koos in 2009. All names in this passage are pseudonyms.

627 This passage is based on my interview with Rex and Karen Butt and Cadence Case in 2009, and subsequent communications.

629 This passage is based on my interviews with Jonah and Lily Marx in 2008 and 2009. ?All names in this passage are pseudonyms and some identifying details have been changed.

631 See the American Psychiatric Association’s 2000 “Position statement on therapies focused on attempts to change sexual orientation (reparative or conversion therapies)”: “Psychotherapeutic modalities to convert or ‘repair’ homosexuality are based on developmental theories whose scientific validity is questionable. Furthermore, anecdotal reports of ‘cures’ are counterbalanced by anecdotal claims of psychological harm. In the last four decades, ‘reparative’ therapists have not produced any rigorous scientific research to substantiate their claims of cure. Until there is such research available, APA recommends that ethical practitioners refrain from attempts to change individuals’ sexual orientation, keeping in mind the medical dictum to First, do no harm.” See also the American Psychological Association Task Force on Appropriate Therapeutic Responses to Sexual Orientation August 2009 press release, “Insufficient evidence that sexual orientation change efforts work,” which advises that mental health professionals “should avoid telling clients that they can change their sexual orientation through therapy or other treatments.” For the “heated debate” about reparative therapy for trans people, see the next note.

631 Kenneth Zucker’s publications include: Kenneth J. Zucker and Susan J. Bradley, Gender Identity Disorder and Psychosexual Problems in Children and Adolescents (1995); Susan J. Bradley and Kenneth J. Zucker, “Gender identity disorder: A review of the past 10 years,” Journal of the Academy of Child & Adolescent Psychiatry 36, no. 7 (July 1997); and Susan J. Bradley and Kenneth J. Zucker, “Children with gender nonconformity: Drs. Bradley and Zucker reply,” Journal of the American Academy of Child & Adolescent Psychiatry 42, no. 3 (March 2003). For journalistic coverage of Zucker’s work, see Alix Spiegel, “Q&A: Therapists on gender identity issues in kids,” NPR broadcast, May 7, 2008; and Daniel Goleman, “The wrong sex: A new definition of childhood pain,” New York Times, March 22, 1994. Exemplifying criticism of Zucker’s position are Simon D. Pickstone-Taylor’s letter “Children with gender nonconformity,Journal of the American Academy of Child & Adolescent Psychiatry 42, no. 4 (March 2003), which says in part: “What Bradley and Zucker (1997) suggest for treatment is something disturbingly close to reparative therapy for homosexuals. Parents are encouraged to discourage cross-gender behavior and stimulate same-sex identification (be this getting fathers to throw footballs at their effeminate sons, or mothers to arrange playdates with girls in frilly dresses for their tomboy daughters). At best, all these forms of therapy are done with the underlying paternalistic hope that these children need to be saved from hurt that will result from their displaying cross-gender behavior in a prejudiced society. While these children might actually thrive on the mere fact that they are getting some attention from a parent who normally shuns them because of their characteristics, the therapy does nothing to change their true predilections or interests. The 10-year review reports the failure of these traditional therapies to prevent these children from becoming homosexuals at a lower rate than ‘untreated children.’ Thus even if they become good actors, this form of therapy only helps to reinforce the message that they get from society that their instinctual gender identification is fundamentally wrong. This further erodes their self-esteem and increases the psychopathology that is normally seen in these children.”

Also, from Y. Gavriel Ansara and Peter Hegarty, “Cisgenderism in psychology: Pathologising and misgendering children from 1999 to 2008,” Psychology & Sexuality 2 (2011): “We assessed whether recent psychological literature on children reflects or contrasts with the zeitgeist of American Psychological Association’s recent non-discrimination statement on ‘transgender’; and ‘gender variant’ individuals. Article records (N = 94) on childhood ‘gender identity’ and ‘expression’ published between 1999 and 2008 inclusive were evaluated for two kinds of cisgenderism, the ideology that invalidates or pathologises self-designated genders that contrast with external designations. Misgendering language contradicts children’s own gender assignations and was less frequent than pathologising language which constructs children’s own gender assignations and expression as disordered. Articles on children’s gender identity/expression are increasingly impactful within psychology. Cisgenderism is neither increasing nor decreasing overall. Mental health professionals are more cisgenderist than other authors. Articles by members of an ‘invisible college’ structured around the most prolific author in this area are more cisgenderist and impactful than other articles. We suggest how authors and editors can implement American Psychological Association policy and change scientific discourse about children’s genders.”

For journalistic coverage of the subject, see Stephanie Wilkinson, “Drop the Barbie! If you bend gender far enough, does it break?,” Brain, Child: The Magazine for Thinking Mothers (Fall 2001).

631 Organizational websites: NARTH (National Association for Research and Therapy of Homosexuality), http://www.narth.com/; Catholic Education Resource Center, http://www.catholiceducation.org/. Works published and promoted by CERC and NARTH principals that cite to Zucker’s work include Richard Fitzgibbons Jr. and Joseph Nicolosi, “When boys won’t be boys: Childhood gender identity disorder,” Lay Witness (June 2001); Joseph Nicolosi and Linda Ames Nicolosi, A Parent’s Guide to Preventing Homosexuality (2002); and A. Dean Byrd and the NARTH Scientific Advisory Committee, “Gender identity disorders in childhood and adolescence: A critical inquiry and review of the Kenneth Zucker research” (March 2007). Proponents of reparative therapy also include orthodox Jews, e.g., Susan L. Rosenbluth, “Help for Jewish homosexuals that is consistent with Torah principles,” Jewish Voice & Opinion 13, no. 4 (December 1999).

631 The mother’s description of her experience implementing reparative therapy comes from Alix Spiegel’s NPR report “Two families grapple with sons’ gender preferences: Psychologists take radically different approaches in therapy,” All Things Considered, May 7, 2008.

631 For the follow-up study of patients at Zucker’s clinic, see Kelley D. Drummond et al., “A follow-up study of girls with gender identity disorder,” Developmental Psychology 44, no. 1 (January 2008).

632 The mother who doubted that her adult daughter would outlive her is profiled in Hanna Rosin, “A boy’s life,” Atlantic Monthly, November 2008. Rosin reports Zucker’s comparison of “young children who believe they are meant to live as the other sex to people who want to amputate healthy limbs, or who believe they are cats, or those with something called ethnic-identity disorder. ‘If a five-year-old black kid came into the clinic and said he wanted to be white, would we endorse that?’ he told me. ‘I don’t think so. What we would want to do is say, “What’s going on with this kid that’s making him feel that it would be better to be white?”’”

632 Zucker’s characterization of transgender children as rigid and joyless is quoted in Stephanie Wilkinson, “Drop the Barbie! If you bend gender far enough, does it break?,” Brain, Child: The Magazine for Thinking Mothers (Fall 2001).

632 Zucker’s characterization of belief in the immutability of gender dysphoria as “simple-minded biological reductionism” occurs on page 267 of Susan J. Bradley and Kenneth J. Zucker, “Children with gender nonconformity: Drs. Bradley and Zucker reply,” Journal of the American Academy of Child & Adolescent Psychiatry 42, no. 3 (March 2003); and as “liberal essentialism” in Alix Spiegel’s May 7, 2008, NPR report, “Q&A: Therapists on gender identity issues in kids.”

632 Susan Coates’s observations about creativity and anxiety in gender-dysphoric youth come from my interview with her in 2008 and subsequent communications.

633 This passage is based on my interview with Dolores Martinez and Tyler Holmes in 2009 and subsequent communications. All names in this passage are pseudonyms.

635 Amy Bloom discusses the contribution of parents to cross-gender identification on page 38 of Normal: Transsexual CEOs, Crossdressing Cops, and Hermaphrodites with Attitude (2002).

635 Heino Meyer-Bahlburg contends that GID cannot be categorized “on a purely scientific basis” on page 461 of his article “From mental disorder to iatrogenic hypogonadism: Dilemmas in conceptualizing gender identity variants as psychiatric conditions,” Archives of Sexual Behavior 39, no. 2 (April 2010). In full: “I conclude that—as also evident in other DSM categories—the decision on the categorization of GIVs cannot be achieved on a purely scientific basis, and that a consensus for a pragmatic compromise needs to be arrived at that accommodates both scientific considerations and the service needs of persons with GIVs.”

636 All quotations from Edgardo Menvielle come from my interview with him in 2009 unless otherwise specified.

636 The finding of a 1 percent rate of post-transition dissatisfaction is reported on page 211 of Mildred L. Brown and Chloe Ann Rounsley, True Selves: Understanding Transsexualism (1996).

636 Danielle Berry expresses her regret about her “jump off the precipice” in Lynn Conway, “A warning for those considering MtF sex reassignment surgery (SRS)” (2005, revised 2007), at http://ai.eecs.umich.edu/people/conway/TS/Warning.html.

636 The quotation from Sam Hashimi comes from Helen Weathers, “A British tycoon and father of two has been a man and a wom http://www.uvm.edu/~tic an . . . and a man again . . . and knows which sex he’d rather be,” Daily Mail Online, January 4, 2009.

637 All quotations and anecdotes from Kim Pearson come from my interviews with her between 2007 and 2012.

637 This passage is based on my interviews with Scott Earle, Lynn Luginbuhl, Morris Earle, and Charlie Earle in 2007 and 2008. Though Lynn and Morris were happy to be quoted by name, Scott asked me to use a pseudonym, which I have done; Charlie’s name is also a pseudonym.

639 The Translating Identity Conference has become an annual event, and UVM has since established official campus policies for gender-variant, transgender, and transsexual students.

639 For more on gayness among trans people, see Autumn Sandeen, who said on KRXQ on June 11, 2009, that “fifty-three percent of transgender women identify as lesbian or bisexual, and ten to thirty percent of transmen are gay.” For their book in development, Understanding Transgender Lives, Brett Genny Beemyn and Sue Rankin at http://www.umass.edu/stonewall/uploads/listWidget/9002/Understanding%20Transgender%20Lives.pdf describe a survey in which “one third of respondents (32%, n = 1,120) reported that their sexual orientation is bisexual, and 30% (n = 1,029) identified as heterosexual. Sixteen percent (n = 567) identified ‘Other,’ which include but are not limited to ‘a mix of asexual, gay, and heterosexual,’ ‘ambivalent,’ ‘attracted to genderqueer people,’ ‘autobisexual,’ ‘bisexual when dressed in female clothes otherwise heterosexual,’ ‘pansexual,’ ‘queer,’ and ‘transgender lesbian.’ Twelve percent identified as lesbian, four percent identified as gay, and five percent identified as asexual. One percent of respondents (n = 26) did not respond to the question.”

See also Mallon and DeCrescenzo (2006), who say, “Transgender youths may identify their sexual orientation or to whom they are romantically and sexually attracted as gay, lesbian, bisexual, questioning, straight, or by some other label; one’s sexual orientation is different from, and not determined by, one’s gender identity. Transgender youths are highly diverse in terms of sexual orientation as well as in terms of gender, race, age, religion, disability, nationality, language, and class background.”

Brill and Pepper, pages 4–6, have written, “Transgender or cross-gender individuals may additionally identify as straight, homosexual, bisexual, or asexual.”

640 Each of these organizations has a website: TransYouth Family Allies (TYFA) at http://www.imatyfa.org; Gender Spectrum at http://www.genderspectrum.org; Mermaids (UK) at http://www.mermaidsuk.org.uk; PFLAG Transgender Network at http://www.pflag.org; TransFamily of Cleveland at http://www.transfamily.org; TransActive at http://www.transactiveonline.org; Genderfork at http://genderfork.com; National Center for Transgender Equality at http://transequality.org; Transgender Legal Defense & Education Fund (TLDEF) at http://www.transgenderlegal.org; and the Transkids Purple Rainbow Foundation at http://www.transkidspurplerainbow.org.

641 This passage is based on my interview with Kim, John, and Shawn Pearson in 2007 and subsequent communications.

644 This passage is based on my interview with Shannon and Keely Garcia in 2009 and subsequent communications.

645 According to a 2011 survey sponsored by the National Center for Transgender Equality and the National Gay and Lesbian Task Force, “Fifty-seven percent (57%) faced some rejection by their family and 43% were accepted”; see page 101 of Jaime M. Grant et al., Injustice at Every Turn (2011).

645 Cris Beam’s description of the mother’s wish that her transgender child would die of AIDS occurs on page 36 of Transparent: Love, Family, and Living the T with Transgendered Teenagers (2007).

645 The excerpt from the outraged mother’s letter to her transgender child is taken from pages 175–76 of Mildred L. Brown and Chloe Ann Rounsley, True Selves (1996).

646 The transphobic drive-time shock-jock harangue and its aftermath was chronicled in the Sacramento Bee; see Carlos Alcalá, “Radio segment on transgender kids raises hackles,” 21Q: A Bee Entertainment Blog, ?June 2, 2009; Carlos Alcalá, “Under fire, radio host says transgender comments were ‘a joke,’” Sacramento Bee, June 4, 2009 (source of quotations from the show); Matthew Keys, “Local radio show takes heat, loses advertisers over transgender comments,” Sacramento Press, June 5, 2009; Bill Lindelof, “Transgender controversy,” Sacramento Bee, June 9, 2009; Carlos Alcalá, “On-air controversy: Radio show back today with transgender advocates,” Sacramento Bee, June 11, 2009; and Bill Lindelof, “Broadcasters apologize on air for transgender remarks,” Sacramento Bee, June 12, 2009.

646 This passage is based on my interview with Hailey Krueger and Jane Ritter in 2009. All names in this passage are pseudonyms.

647 Metropolitan Community Church website: http://mccchurch.org/.

650 See the National Center for Transgender Equality and the National Gay and Lesbian Task Force study Injustice at Every Turn: A Report of the National Transgender Discrimination Survey (2011); and for similar findings among youth, Michael Bochenek and A. Widney Brown’s report for Human Rights Watch, Hatred in the Hallways: Violence and Discrimination against Lesbian, Gay, Bisexual, and Transgender Students in U.S. Schools (2001).

650 Statistics on homelessness and prostitution among transgender youth come from Nicholas Ray’s 2007 report to the National Gay & Lesbian Task Force, “Lesbian, gay, bisexual and transgender youth: An epidemic of homelessness”; and David Kihara, “Giuliani’s suppressed report on homeless youth,” Village Voice, August 24, 1999.

650 The quotation from the transgender sex worker (“I like the attention; it makes me feel loved”) comes from Corey Kilgannon, “After working the streets, bunk beds and a Mass,” New York Times, May 2, 2007.

650 This passage is based on my interview with Albert Cannon, Roxanne Green, and Dante Haynes in 2009.

652 Teish Green’s murder and Dwight DeLee’s trial were thoroughly chronicled by the Syracuse Post-Standard; for an index of all coverage, search http://www.syracuse.com for Moses Cannon. Articles consulted for this passage include Matt Michael, “Syracuse man was killed for being gay, police say,” Syracuse Post-Standard, November 16, 2008; Jim O’Hara, “Syracuse man indicted on hate-crime murder charge,” Syracuse Post-Standard, April 3, 2009; and Jim O’Hara, “Dwight DeLee gets the maximum in transgender slaying,” Syracuse Post-Standard, August 18, 2009.

653 The quotation from Michael Silverman about Dwight DeLee’s trial comes from my interview with him in 2009.

653 Statistics on murders of transgender people come from Gwendolyn Ann Smith’s informational website, Remembering Our Dead, http://www.gender.org/remember. For discussion of proposals to extend hate-crime protection to transgender people, see David Stout, “House votes to expand hate-crime protection,” New York Times, May 4, 2007. See also http://www.transgenderdor.org/.

654 Carsten Balzer refers to the international incidence of murder of transgender people, and the frequent murder of minors, on pages 156–57 of his report “Preliminary results of Trans Murder Monitoring Project,” Liminalis 3 (July 2009); on page 157, Balzer cites Thomas Hammarberg’s account of the Portuguese incident in “Discrimination against transgender persons must no longer be tolerated,” Office of the Commissioner for Human Rights, 2009.

654 Contemporary news reports on murders of transgender people: Krissy Bates: Abby Simons, “‘The killing of one of our own,’” Minneapolis Star Tribune, January 22, 2011; and Abby Simons, “Man guilty of murdering transgender victim,” Minneapolis Star Tribune, November 24, 2011. Tyra Trent: Jessica Anderson, “Vigil remembers transgender murder victim,” Sun, March 5, 2011. Marcal Camero Tye: Jeannie Nuiss, “FBI may investigate dragging death as hate crime,” Commercial Appeal, March 20, 2011. Nate Nate: Dale Lezon, “HPD releases suspect sketch in cross-dresser’s killing,” Houston Chronicle, June 14, 2011. Lashai Mclean: Pat Collins, “Transgender person slain in northeast,” NBC Washington, July 21, 2011. Camila Guzman: Steven Thrasher, “Camila Guzman, transgender murder victim, remembered in East Harlem Vigil,” Village Voice, August 12, 2011. Gaurav Gopalan: Trey Graham, “The final days of Gaurav Gopalan,” Washington City Paper, September 21, 2011. Shelley Hilliard: Gina Damron, “Mom waits for answers in transgender teen’s death,” Detroit Free Press, November 12, 2011.

654 This passage is based on my interview with Anne O’Hara, Marshall Camacho, Glenn Stevens, and Kerry Adahy in 2009. All names in this passage are pseudonyms.

659 The quotation from Judith Butler (“One might wonder what use ‘opening up the possibilities’ finally is . . .”) occurs on page viii of the revised edition of her book Gender Trouble: Feminism and the Subversion of Identity (1999).

660 This passage is based on my interview with Bridget and Matt McCourt in 2009. All names in this passage are pseudonyms.

661 This passage is based on my interview with Nicole, Ben, and Anneke Osman in 2009.

662 This passage is based on my interview with Vicky Pearsall in 2007 and subsequent communications. All names in this passage are pseudonyms.

663 Emmy Werner’s comment about children who are gender-flexible comes from an interview with Robin Hughes on the episode “Resilience” of the Australian radio show Open Mind, broadcast April 29, 1996.

663 The quotations from Renée Richards disapproving of gender fluidity come from Debra Rosenberg, “Rethinking gender,” Newsweek, May 21, 2007; and Maureen Dowd, “Between torment and happiness,” New York Times, April 26, 2011.

664 Justin Vivian Bond’s remark about “nurturing your nature” comes from Mike Albo, “The official Justin Bond,” Out, April 11, 2011.

664 This passage is based on my interview with Eli, Joanna, and Kate Rood in 2007 and subsequent communications, as well as Eli’s blog at http://translocative.blogspot.com/.

666 The quotation from Kate Rood (“Eli is soon to be rendered infertile . . .”) comes from her article “The sea horse: Our family mascot,” New York Times, November 2, 2008.

666 The closing quotation from Eli Rood comes from his essay “Not quite a beginning,” Eli’s Coming, February 3, 2006, http://translocative.blogspot.com/2006/02/not-quite-beginning.html.

666 See David Smith, “Gender row athlete Caster Semenya wanted to boycott medal ceremony,” Guardian, August 21, 2009.

666 IOC Medical Commission chairman Arne Ljungqvist admitted, “There is no scientifically sound lab-based technique that can differentiate between man and woman,” in Debra Rosenberg, “Rethinking gender,” Newsweek, May 21, 2007.

666 Caster Semenya declared, “I accept myself,” in the cover story of a September 2009 issue of the South African magazine YOU, as reported in the Independent Online, September 8, 2009.

667 This passage is based on my interview with Shannon Minter in 2009.

667 The full text of the decision in the case, In re the marriage of Michael J. Kantaras v. Linda Kantaras (Case 98-5375CA, Circuit Court of the Sixth Judicial Circuit in and for Pasco County, Florida, February 2003), is available online at http://www.transgenderlaw.org/cases/kantarasopinion.pdf; the quotation from the judge (“Transsexualism is a massively complex and difficult problem deserving of the highest respect and sympathy . . .”) occurs on page 774.

668 Genesis 5:2: “Male and female he created them.”

668 This passage is based on my interviews with Carol McKerrow, Don Harriot, Kim Reed, and other members of their families in 2009 and subsequent interviews and communications, as well as Kim’s film Prodigal Sons (2009) and Kim and Carol’s appearance on Oprah in 2010.

672 See Martin J. Kidston, “Helena prodigal son returning as woman,” Independent Record, September 24, 2009; see also Kidston’s report on the film showing two days later, “250 pack church for transgender documentary,” Independent Record, September 26, 2009.

674 The lines by Alfred, Lord Tennyson come from “In memoriam A.H.H.” (1849), on page 155 of The Complete Works of Alfred Lord Tennyson (1891).

675 My book about Russian art is The Irony Tower: Soviet Artists in a Time of Glasnost (1991).

XII: Father

679 The quotations from Bree Walker and the talk-show hosts (“It was shocking to me . . .” and “Is it fair . . .”) come from Daniel Corone, “Bree Walker blasts KFI’s Baby Talk,” Los Angeles Times, August 17, 1991.

679 The second quotation from Bree Walker (“I felt that my pregnancy had been terrorized . . .”) comes from Steven A. Holmes, “Radio talk about TV anchor’s disability stirs ire in Los Angeles,” New York Times, August 23, 1991; the third and fourth (“The darkest moment of my life” and “Tossed the coin . . .”) come from her interview with ABC News, “Medical mystery: Ectrodactyly,” broadcast on January 29, 2007.

679 The quotation from Bill Holt (“For anyone to determine that Bree Walker should not have children . . .”) comes from Daniel Corone, “Bree Walker blasts KFI’s Baby Talk,” Los Angeles Times, August 17, 1991.

679 All quotations from Joanna Karpasea-Jones come from her article “Daring dis-abled parenting,” Mothering, November–December 2007.

680 The quotation from Adrienne Asch (“Chronic illness and disability are not equivalent to acute illness or sudden injury . . .”) comes from pages 1650–51 of her article “Prenatal diagnosis and selective abortion: A challenge to practice and policy,” American Journal of Public Health 89, no. 11 (November 1999). It has been condensed. In full: “Chronic illness and disability are not equivalent to acute illness or sudden injury, in which an active disease process or unexpected change in physical function disrupts life’s routines. Most people with conditions such as spina bifida, achondroplasia, Down syndrome, and many other mobility and sensory impairments perceive themselves as healthy, not sick, and describe their conditions as givens of their lives—the equipment with which they meet the world. The same is true for people with chronic conditions such as cystic fibrosis, diabetes, hemophilia, and muscular dystrophy. These conditions include intermittent flare-ups requiring medical care and adjustments in daily living, but they do not render the person as unhealthy as most of the public—and members of the health profession—imagine.”

680 See Laura Rothenberg, Breathing for a Living (2004), and my article “The Amazing Life of Laura,” Glamour, July 2003.

681 The reference to “made-to-order babies” comes from Lindsey Tanner, “Physicians could make the perfect imperfect baby,” Los Angeles Times, December 31, 2006.

681 For the survey finding that 3 percent of PGD clinics have selected for disability, see Susannah Baruch, David Kaufman, and Kathy L. Hudson, “Genetic testing of embryos: Practices and perspectives of US in vitro fertilization clinics,” Fertility & Sterility 89, no. 5 (May 2008).

681 Robert J. Stillman’s comment (“. . . Dwarfism and deafness are not the norm”) occurs in Darshak Sanghavi, “Wanting babies like themselves, some parents choose genetic defects,” New York Times, December 5, 2006. In full: “Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. ‘In general, one of the prime dictates of parenting is to make a better world for our children,’ he said in an interview. ‘Dwarfism and deafness are not the norm.’”

681 The quotation from Michael Bérubé (“The question is whether we will maintain a social system that makes allowance for unpredictability . . .”) occurs on page 86 of his memoir, Life as We Know It: A Father, a Family and an Exceptional Child (1996).

681 The Human Fertilisation and Embryology Act 2008 represented an amendment and updating of legislation enacted in 1990; for the full text, see http://www.legislation.gov.uk/ukpga/2008/22/contents. The controversy over its provisions pertaining to disability was described in Steven D. Emery, Anna Middleton, and Graham H. Turner, “Whose deaf genes are they anyway?: The Deaf community’s challenge to legislation on embryo selection,” Sign Language Studies 10, no. 2 (Winter 2010). The comment by pseudonymous blogger Mishka Zena comes from the post “Eugenics too close to home: Tomato Lichy, U.K. activist,” Endless Pondering, March 10, 2008, at http://www.mishkazena.com/2008/03/10/eugenics-too-close-to-home-tomato-livy-uk-activist.

682 Sharon Duchesneau and Candace McCullough tell their story in Liz Mundy, “A world of their own,” Washington Post Magazine, March 31, 2002. For a scholarly article about this case, see Humphrey-Dirksen Bauman, “Designing deaf babies and the question of disability,” Journal of Deaf Studies & Deaf Education 10, no. 3 (Summer 2005).

682 See Wendy McElroy, “Victims from birth: Engineering defects in helpless children crosses the line,” FOX News, April 9, 2002.

682 John Sproston’s letter to the editor expressing dismay at Sharon Duchesneau and Candace McCullough’s desire to give birth to a deaf child (“That three people could deliberately deprive another person of a natural faculty . . .”) was published in the Washington Post on June 9, 2004, and is quoted in Judith F. Daar, “ART and the search for perfectionism: On selecting gender, genes, and gametes,” Journal of Gender, Race and Justice 9, no. 2 (Winter 2005).

682 The quotation from John Corvino (“They could have chosen a different donor . . .”) comes from his article “Why Baby Gauvin is not a victim,” Gay & Lesbian Review Worldwide 9, no. 6 (2002).

682 Patrick Boudreault’s comment (“No one is talking, ever, about deliberately deafening a child born hearing”) comes from a personal communication in 2008.

683 Sean Tipton’s comment about the usual desire of parents to bring forth children who resemble them, and Sharon’s and Candy’s replies, come from Liza Mundy, “A world of their own,” Washington Post Magazine, March 31, 2002.

683 Carina Dennis’s observation (“Communication and the pursuit of intimacy are central to being human . . .”) occurs on page 894 of her article “Genetics: Deaf by design,” Nature 431 (October 21, 2004).

683 See William Saletan, “Deformer babies: The deliberate crippling of children,” Slate, September 21, 2006.

683 The Johns Hopkins survey of PGD clinics is described in Susannah Baruch, David Kaufman, and Kathy L. Hudson, “Genetic testing of embryos: Practices and perspectives of US in vitro fertilization clinics,” Fertility & Sterility 89, no. 5 (May 2008).

683 See Gautam Naik, “A baby, please. Blond, freckles, hold the colic: Laboratory techniques that screen for diseases in embryos are now being offered to create designer children,” Wall Street Journal, February 12, 2009.

683 See the University College London press release “First baby tested for breast cancer form BRCA1 before conception born in U.K.,” January 9, 2009; and the CNN report “‘Cancer-free’ baby born in London,” broadcast January 9, 2009.

683 The Los Angeles Fertility Institutes’ plans to offer selection for gender, hair, and eye color were described in Gautam Naik, “A baby, please. Blond, freckles, hold the colic: Laboratory techniques that screen for diseases in embryos are now being offered to create designer children,” Wall Street Journal, February 12, 2009.

684 Results of the Johns Hopkins survey of public opinion regarding genetic testing are reported in Aravinda Chakravarti et al., Reproductive Genetic Testing: What America Thinks (2004).

684 See Michael J. Sandel, The Case Against Perfection (2007).

684 The quotation from Marc Lappé (“It would be unthinkable and immoral . . .”) comes from his pioneering paper on genetic selection, “How much do we want to know about the unborn?,” Hastings Center Report 3, no. 1 (February 1973).

684 Patricia Bauer’s observation that “prenatal testing is making your right to abort a disabled child more like your duty to abort a disabled child” comes from her article “The abortion debate no one wants to have,” Washington Post, October 18, 2005.

685 The statement “American mobility is exceptional; where we stand out is our limited mobility from the bottom” comes from Scott Winship, “Mobility impaired,” National Review, November 14, 2011.

686 See Gurinder Osan, “Baby with two faces born in North India,” Associated Press/MSNBC, April 9, 2008. All quotations come from this report.

686 Lali’s death from a heart attack was reported on the BBC Channel 4 program Body Shock, broadcast September 16, 2008.

687 New Haven’s arboreal tragedy and the city’s recovery efforts are described in Charlotte Libov, “New Haven holding on to ‘Elm City’ nickname,” New York Times, April 24, 1988; Bruce Fellman, “The Elm City: Then and now,” Yale Alumni Magazine, September/October 2006; and David K. Leff, “Remaining elms hint at tree’s elegant past,” Hartford Courant, October 27, 2011.

688 Our journey and that of other gay parents who seek to create a family through assisted reproductive technology is described in Emma Brockes, “Gay parenting: It’s complicated,” Guardian, April 20, 2012. I wrote about our experiences in “Meet my real modern family,” Newsweek, January 30, 2011.

698 Roger Penrose discusses the anthropic principle on pages 433–34 of The Emperor’s New Mind: Concerning Computers, Minds, and the Laws of Physics (1989).

701 The quotation from William Dean Howells (“what the American public always wants is a tragedy with a happy ending”) occurs on page 147 of Edith Wharton’s autobiography, A Backward Glance (1934).

701 Compare, for example, the insight-oriented approach advocated by psychologists such as Erik H. Erikson (see his 1959 anthology, Identity and the Life Cycle) with the cognitive techniques described by Martin Seligman in Learned Optimism (1991).