by Nathan Heller
For Megan and Michael, a Los Angeles couple, the crucial turn of parenthood came not in the delivery room but eight months later, when they started to worry that something had gone wrong with their son. The baby, Jacob, didn’t respond to the surrounding world the way his older sister had; when Megan started banging on pots, one night, he did not even flinch. At the hospital, a test confirmed their fears: Jacob was deaf, and most of the assumptions that they had about his future would change. At first, Megan and Michael took the difference in stride, seeking programs that would help Jacob acquire language and find a place in the hearing world. But the offerings were, almost without exception, rather grim, and few promised a life at anything near standard speed. The instructor at one celebrated clinic boasted that Jacob would be saying “apple” by the age of two. Megan protested that her daughter, at that point, could talk in sentences. “Your expectations are too high,” the instructor said. Megan knew they’d need to take another path.
The secret history of sex is not a story of fulfilled desires; it’s a story of expectations dropped off the cliff of the unknown. Coupling reroutes lives, and delimits them, and when the stork turns up bearing a charming bundle the chances for complication grow alarmingly profuse. On the day of the twenty-week sonogram, perhaps, you learn that your child has foreshortened limbs. Amniocentesis might identify abnormal chromosomes; an obstetrician in the delivery room whisks away your newborn to run tests. Maybe, back home, a fire alarm goes off and he does not wake, or maybe, at ten months, you notice that your baby will not look you in the eye. Or perhaps none of this happens and you’re one of the lucky ones, and so you send your kid to oboe lessons and good schools and camp and proms, and then, at twenty, on a campus where he has a girlfriend and a full course load, he begins hearing voices in his head. Ordinary family life is perilous enough: healthy kids fail at school, have drug problems, get bullied, or are shattered by foul divorces. When the quirks of biology intercede, too, the foreverness of parenthood can turn into a long walk in the dark.
In the case of Megan and Michael, being the parents of a deaf child meant travelling into a foreign country. Frustrated with the clinic, they enrolled Jacob in sign-language education, and then learned the language so that they could communicate with him. Megan helped found a deaf-services hotline, called Tripod, and a Montessori school that taught deaf and hearing students together. But these efforts weren’t entirely triumphant. At one point, a Deaf activist (deafness is a condition; Deaf is the community it creates) told Megan, “The best thing would be to give your child to a Deaf family and let them raise him.”
The story of Megan, Michael, and their unexpected family life is one of many in Andrew Solomon’s Far from the Tree: Parents, Children, and the Search for Identity (Scribner). Solomon, an assiduous journalist with an essayistic bent, is fascinated by the paradoxes of procreation: how do you nurture a child who may be unlike anything you’ve encountered before? Most people who consider themselves black, say, or Jewish, have parents who do, too. Solomon calls this “vertical identity,” because it flows naturally down the generations. It’s a conduit through which the benefits of shared experience—empathy, hindsight, a sense of who you are—can travel. But what if, like Jacob, you are a deaf child with hearing parents? What if you’re a dwarf with parents of normal proportions? These identities are “horizontal”: there’s a rupture between the child’s life and the parents’ experiences. They seem to challenge many premises of family and interrupt the basic continuity that it presumes.
Solomon is in many ways the perfect writer for the subject—nuanced, thorough, humane, and a gifted stylist—and, trying to get to the root of this conflict, he pushes horizontal identity as far as it will go. He includes chapters not only on deafness and dwarfism but on Down syndrome, autism, schizophrenia, multiple severe disability, early genius, conception through rape, criminal behavior, and transgender life. He talks with more than three hundred families; interviews those around them; and reads extensively about the conditions they face. When bonds within families begin to fray, he seeks to understand what went wrong.
His motives, he says, are partly personal. In his previous book, The Noonday Demon (2001), Solomon explored the science and culture of clinical depression through interviews and the scrim of his own struggles. Far from the Tree began as a companion piece, for, in addition to being depressive, Solomon is gay. (“In my adulthood, being gay is an identity; the tragic narrative my parents feared for me is no longer inevitable.”) In an effort to “recast” his fraught relationship with his parents and their reaction to his sexuality, he began studying other forms of horizontal identity. The research overflowed the mold. At more than eight hundred pages, including notes, Far from the Tree is a cross-section of something that defies sectioning, an exploration of difference as it shapes family life.
In certain ways, this is a headlong run into a minefield. Start with that term “difference.” Today, the word often appears behind a shield of euphemism, used by polite people to refer to otherness, misfortune, or just something ineffably bizarre (Björk’s taste in clothes, your Aunt Matilda’s carrot-carob torte). For Solomon, though, the concept is more ecumenical, and distinguishing among its shades becomes his crucial task. Are blindness, autism, paralysis, depression, and other conditions “illnesses” to be avoided? Or are they simply another way of moving through the world? Parents of a sleepless autistic kid who smears her feces across the kitchen walls may be loath to see that conduct as just-gotta-be-me identity. But what about Sir Isaac Newton, whom some contend was autistic?
For most of human history, conditions of the kind Solomon explores were stigmatized and moralized, and blame was assigned to any party who could be held accountable—usually the parents. Imaginationism, the belief that abnormal children come from mothers who indulged in perverse thoughts and general bad juju, persisted into the modern age. It was suggested, for example, that Charles Sherwood Stratton, the nineteenth-century circus entertainer known as General Tom Thumb, owed his short stature to his mother’s shock at seeing the family puppy die.
A basic paradox of contemporary social thought is that in order to respect difference we elide it. Maybe being a black man in the South isn’t quite like being a gay Northerner from an observant Catholic family, but isn’t the idea more or less the same? Maybe having Down syndrome is not strictly comparable to being an academy-trained sculptor who is blind; yet they both entail living with major impairments, so don’t they require similar protections? We generally agree that everyone should be treated fairly, and that the vulnerable should be guarded. Working from this principle to specifics—who’s vulnerable, and when?—is a frequent area of disagreement, though, and one that benefits from the clarifying efforts of social work and jurisprudence.
Solomon moves in the opposite direction. Instead of starting with the principles and applying them to specific conditions, he’s starting with the conditions—ten of them, anyway—and progressing toward where they converge. “The beautiful mosaic of multiculturalism was a needed antidote to the melting pot of assimilationism,” he writes. “Now it’s time for the little principalities to find their collective strength.”
Follow this train of thought to the end of the line, though, and you end up in a weird place. Growing up with extreme mental incapacity and no speech is not the same as being part of a vibrant Chicano-American community. A legless man, we feel, should be free to get prosthetic legs without feeling like a traitor to himself and the broader society of legless people. At one point, Solomon writes of the Mad Pride movement, which advocates a low-intervention, self-determined approach to schizophrenia and other mental conditions, partly on the ground that everyone ought to have control of his own mind, even if it’s subject to hallucinations. (The movement has little clinical support.) Most of us have the sense that this is not the most helpful approach, that it is better to treat schizophrenic Cousin Sandoval than to shrug and turn him loose with his delusions. But how is this different from requiring a dwarf to submit to a stretching rack?
In support of his Republic of Difference approach, Solomon refers to “intersectionality”: a theory, originally an outgrowth of second-wave feminism, that most real-life predicaments are inflected not by a single identity but by several overlapping ones that are sometimes in tension. (An African-American woman who reports domestic abuse is not only responding to male dominance; she is also inviting the intervention of white power in her black community.) Solomon uses the theory as evidence that “you cannot, for example, eliminate sexism without addressing racism,” and that we are “all in one fight.” This is basically the world view of “Hairspray,” and its appeal is undeniable. Still, the point of intersectionality isn’t that various identities are all part of one thing. It’s that situations are specific, because individual experiences depend on several factors acting in tandem.
Most people have an instinctive sense of the differences within difference; some told Solomon so. “Deaf people didn’t want to be compared to people with schizophrenia; some parents of schizophrenics were creeped out by dwarfs; criminals couldn’t abide the idea that they had anything in common with transgender people,” he writes. But he thinks that they belong together, because of the family dynamics their conditions create. Difference calls for an adaptation of parental expectation, challenging traditional ideas about nurture and support. Solomon’s question is simple: why do parents devote themselves to raising children who are nothing like the ones they thought they could love?
Sometimes they don’t. In Solomon’s chapter on “multiple severe disability” (the term for a complex of physiological problems), we meet Julia, who went into sudden, violent labor with her second child at thirty-eight weeks. The baby, Imogen, was born amid the blood of a hemorrhaging placenta, and survived owing to the hospital’s ministrations. As she grew, though, she screamed in constant torment. Julia’s partner suggested that they suffocate Imogen to spare everyone pain. Julia refused, but had similar thoughts. A brain scan revealed that Imogen had lost her cerebral cortex, where intelligence resides. Finally, the couple surrendered her to the adoption services. “I’m not the right mother for this child,” Julia explained.
Solomon asks parents whether, given a choice, they would do it all over again. And he asks men and women who have horizontal identities whether they’d wish the same experience on their own children. Sometimes the answers are surprising. Solomon quotes the blind writer Deborah Kent, who was dismayed to find that her own mother and her husband blanched at the idea of her giving birth to a blind kid. She thought they loved her! He finds parents who persist largely in the spirit of an arduous hike: by the time they feel ragged, they’ve gone too far to turn around. At one point, the affectionate mother of two autistic teen-agers confesses, “My husband will sometimes say, ‘Would you marry me again?’ I say, Yeah, but not with the kids. Had we known what we know now, we wouldn’t have done it.”
Of course, people are individuals, and circumstances other than their shared predicament can intercede. “If you banish the dragons, you banish the heroes—and we become attached to the heroic strain in our personal history,” Solomon writes. The notion of triumph through adversity is old, and, in its persistence, we’ve come to see disadvantage as a double-edged sword: dangerous and heavy, but a weapon all the same. These days, we glaze over at “normal”; our dream in life and romance is to connect with people who appear unique and far beyond the high arch of the bell curve. We hope that our children will be different. That may be why we have such a fraught, solicitous approach to disability: it’s the awkward flip side of our pleas for specialness. Every child who isn’t like us is a potential window onto something more.
“Identity,” in its raw state, is a term of sameness; its root also gave us “identical” and “identification.” Yet the twenty-first-century sense of the term has moved afield from this origin, thanks partly to two theories. One is the theory of “identity crisis,” which the neo-Freudian psychologist Erik Erikson coined to talk about the reckonings of adolescence. Erikson used “identity” to mean a balance between one’s sense of self—one’s sense of personal continuity—and the expectations of one’s community. In adolescence, as we try to reconcile these parts and find a route forward, things can become confused. (“Identity crisis” became a catchphrase when Erikson turned his theory onto the student unrest of the late nineteen-sixties.) It is a term used to describe the progress of the self.
Often, though, we hear talk about “social identity” or “identity politics.” These phrases don’t rest on the Eriksonian sense of the term. As the sociologist Alvin Gouldner wrote in his influential studies of group interaction, from the fifties, social identity is a role designation—basically, a pigeonhole—and people in a group play into, or against, the expectations it encompasses. This is the general concept of identity drawn upon by movements like gay pride and Black Power. It’s an objective social category, used as a framework to bring unity within a group.
These two concepts of identity, me-ness and us-ness, are clearly in tension. Yet much of our contemporary conversation about authenticity, community, and other social abstractions treats them as one thing. It’s why Solomon suggests that we are drawn together in our various peculiarities—and, in that sense, his book sheds some useful light on the limits and the power of modern identity talk.
The limits are particularly clear in his account of the 2003 Little People of America conference. For those with dwarfism, he says, that event can be “the annual exception to a certain kind of loneliness.” For him, it was a lesson in what changes socially when one form of otherness begins to fade away:
Instead of seeing, primarily, short stature, I saw that one was exceptionally beautiful, that one was unusually short even for a dwarf, that one laughed uproariously and often, that one had an especially intelligent face—and so I began to recognize how generically I had responded to little people until then. I understood what a relief it had to be for them that no one was focused on their height. . . . The conference featured athletic competitions; a marathon-length talent show, including acts from Christian music to break dancing; and a fashion show, which revealed a broad range of dressy and casual styles, all tailored to little bodies. The conference also provided an eagerly awaited opportunity for dating.
It may seem odd to say that “no one was focused” on the dwarfs’ stature here. After all, the Little People of America conference was all about height, from the guest list to the fashion show. But its social logic is the same you find at coffee hours for retirees, cocktail gatherings for Notre Dame alumni, and meetings for recovering alcoholics. Against a baseline of common experience, a factor that might be distinguishing (the short stature, the age and frailty, the profusion of Fighting Irish paraphernalia) drops away to reveal subtler marks of distinction. Identity isn’t ultimately a bond of unifying sameness; it’s a bid to control which forms of difference people perceive. And any move away from this levelled playing field can be perceived as a defection. Within the community of the Deaf, someone who gets cochlear implants and joins the ranks of the hearing may feel like a Jew for Jesus at a Satmar Talmud class.
Still, not every impairment fits this mold. Take Jim Abbott, the star major-league pitcher of the nineties, who was born without a right hand. In his recent memoir, “Imperfect: An Improbable Life” (Ballantine), Abbott recalls visiting a rehabilitation hospital, at the age of five, to be fitted with a prosthetic arm. He didn’t like the device, and wondered whether he “belonged” at the hospital, where many of the children had more serious incapacities. “I didn’t want to be poked and stretched and then sit around staring through the windows as nurses wrote notes on the clipboards,” he explains. In school, however, his missing hand became an object of fixation among the other students, and a certain self-awareness started to take shape:
For me, it began with the realization that I was different, except it did not arrive with a single unpleasant thunderclap. It arrived in nagging episodes over the course of every day, and what followed was the routine fight back from them, and the desire to be accepted.
That’s how baseball—all sports, really—grew for me, from the Wiffle ball games in the backyard to the pretend games off the brick wall to the bike rides through the neighborhood and Little League games and then to the high school games.
I wanted to play. I loved to play. But there was more. I sought acceptance beyond what my appearance told people about me.
Abbott’s trajectory doesn’t derive from a sense of oneness with other kids with missing limbs. Instead, he sought to eclipse his most conspicuous difference with difference of another kind: exceptional pitching ability. Does that mean that his whole life has been an effort to deny that horizontal birthright, to play a craven game of elaborate distraction? Or do his compensatory efforts show that his handlessness really was a governing identity? In the end, both questions point to the same impulse, and the same spark of ambition: a desire to make something defiantly big out of the little you are given.
You needn’t be missing a hand or twenty-four inches of height to understand this urge. Since early childhood, I have spoken with a stutter. Neither of my parents does, nor had either of them known stutterers before I was born. A stutter like mine is debilitating, to the extent that it can make speech slow and arduous for speaker and listener alike. And it has social casualties: I can’t trust myself to offer witty badinage or beguiling stories—or even to articulate my name clearly when asked. If I try to speak the fluid conversation I imagine, it comes out halting and flat. If I dodge tricky words by swapping in synonyms, I run the risk of saying something startlingly tone-deaf. (“It is the eleventh of March my birthday!” I once informed an inquisitive parent, like an exchange student air-dropped in from Germany.) But the most haunting trouble with a stutter is the assumption that I must pursue life on a different playing field from other people, that the major leagues—in social life, in work, in love—belong to my verbally adroit peers.
It’s unsurprising, then, that stuttering people, especially those who overcome the worst of the impediment, swarm disproportionately to careers that require high-wire feats of eloquence: politics (Joe Biden, Winston Churchill), entertainment (Carly Simon, James Earl Jones, Samuel L. Jackson), letters (Maugham, Updike, Drabble). If the first thing people notice is your difficulty speaking a sentence, wouldn’t it be better if instead they first recognized your proficiency at putting words together?
Does that make efforts to work past the problem acts of self-loathing? Should I worry that I’d prefer to spend an evening with four other writers than with four stuttering people—and that I’d be happy not to stutter in the course of that evening, too? Solomon is drawn to the notion that people find affinity through their most horizontal traits. But not every trait forms a basis for community; not every difference needs to go uncorrected. “Having a child who goes to prison frequently imposes isolation,” Solomon observes, in his study both of parents of criminals and of the familial lure of gang life. “Most knew it would serve their children’s interests to avoid crime—or at least to avoid punishment.” We need not approach every difference the same way.
Of course, most parents would be happy to see their stuttering kid grow up to be Samuel L. Jackson, or to watch their daughter with Asperger’s become the next Newton. Few do. Solomon never addresses the question of aspiration head on—his book is not that prescriptive—but, reading it, I found myself thinking about my own childhood. Had I been brought up well, as a horizontal kid? Although my parents and I talked a lot over the years about my stuttering, about therapy and how best to deal with oral book reports, the big question of what the impediment might mean for my future went pointedly undiscussed. Once, though, when my siblings and I were having a dinner-table debate about “designer babies,” my father jumped in. “The thing to remember,” he said, “is that when you eliminate the genes for shortness and baldness and anxiety, you eliminate the possibility of Woody Allen.” We thought about that for a while, and I’ve thought about it now and then since. The possibility of Woody Allen: that remains the clearest parental message about self-pity, aspiration, and responsibility I think I’ve ever received.
Consider “Annie Hall.” This is a movie strung between disparate worlds. There’s the deep-Brooklyn corral of roller coasters, diabetes, and tallis salesmen, and there’s a post-Freudian paradise of documentary cinema and swinging entertainment-biz parties. It is, in short, a narrative of horizontal identity, a story about being born “out of step” with your family and joining a community alien to your parents’ milieu. (Norman Podhoretz: “One of the longest journeys in the world is the journey from Brooklyn to Manhattan.”) And it shows how Solomon’s book follows an extreme version of what’s essentially a standard path. Our children often end up in what seems to us a foreign land.
Solomon’s chapter on deafness is his most arresting, in part because the influence of deafness on identity can be both unusually strong and exceptionally communal. Sign language has its own syntax patterns, dialects and accents (American Southerners are known for “blurry” signing), and even usage experts, who teach native signers to use the language with concinnity. Deaf people who learned sign before learning spoken language think in sign, not English; those taught spoken language first can be set back in their intellectual developments. And because Deaf culture is pervasive, those who embrace it often find a rich quasi-ethnic identity. One well-travelled former airplane pilot tells Solomon, “Though we used different signed languages, these Chinese Deaf people and I could make ourselves understood; and though we came from different countries, our mutual Deaf culture held us together. You couldn’t do that in China. . . . Who’s disabled then?”
He has a point, of course, but deafness seems like something of a special case. People with Down syndrome are not flying planes across the globe to hang out over pu-erh and discuss the finer points of Western culture in a language all their own. Extreme autistics who don’t speak and have little social tropism aren’t organizing talent shows. Identity talk encourages us to respect the autonomy of groups and individuals, yet extreme mental debility reflects the impairment, even negation, of autonomy. How does this fit among disorders that allow for greater self-possession? Far from the Tree is a careful, subtle, and surprising book, but in its weakest moments, when the pieces don’t quite line up, Solomon defaults to something that resembles cheerleading: these are brave people, he suggests, and we ought to be impressed by them.
In 1990, George H. W. Bush sat at a table on the South Lawn of the White House and signed the Americans with Disabilities Act into law. Born out of years of advocacy, the act took the conceptual template of existing rights legislation—the 1964 Civil Rights Act—and applied it to disability discrimination. You cannot quarantine or exclude people because of their conditions, it stated; disabled people should be able to partake of public services and opportunities on an equal footing with the rest of the population. Today, restaurants and trains and libraries must be accessible to disabled patrons. Even before the days of Skype, a deaf person had the means to complete a two-way call. President Bush called the A.D.A. “the world’s first comprehensive declaration of equality for people with disabilities,” and, allaying concerns that it would put a litigious yoke on the private sector, he framed it as sound conservative policy. “We’ve all been determined to insure that it gives flexibility, particularly in terms of the timetable of implementation,” he said. Disabled people would no longer be “dependent”; instead, they’d “move proudly into the economic mainstream of American life.”
Many have—but not without some added help. In 2008, another President Bush sat at another table and signed another law. The A.D.A. Amendments Act expanded the original legislation’s definition of disability to include impairments in “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.” The amendment also extended protection to those who have impairments with “major bodily functions,” like the immune and lymphatic systems (that is, chronic infections such as H.I.V.), and “episodic” conditions (like epilepsy).
The shift is telling. People know disability when they see it, the 1990 law assumed. Well, maybe not, the amendment conceded. For all its breadth, the newer law is actually a step away from disability as identity, dodging the question of equivalence among conditions. It doesn’t matter whether dyslexia and dwarfism are ontologically similar, because they’re both on the list. We’re slowly moving from a comparative model of disability to a declarative one.
On the one hand, this means that we now label people who might rather go unmarked. (What do you mean I’m disabled because I can’t reach the light switch?) But we’ve also stripped away some of the judgment and the mystique surrounding the category—a welcome change. Compare the clinical histories of a high-school class in 1950 with one today, and you’ll notice something: lots of students these days count themselves as disabled, some, perhaps, because the label offers benefits that outweigh its social stigma. (Many, in fact, wonder whether the pendulum has swung too far, toward overdiagnosis.) Disability is less and less determining, increasingly something we recognize as being part of “normal life.”
That makes mere difference, horizontal or otherwise, a hard thing to hang an identity on. Earlier this year, an engaging treatment of Solomon’s subject came to the New York stage, in the comedy “Tribes,” by the British playwright Nina Raine. “Tribes,” which has recently extended its run, centers on a voluble academic family with three children, one of whom is deaf and another of whom is a high-functioning schizophrenic. When the deaf son falls in love with a woman with Deaf parents, he’s tempted to leave his world of words behind. As the family struggles to adjust to this new configuration, its members redraw their relationships and remake their roles. Ambition turns into complacency. Strength becomes weakness. Indulgence wanes to need. The play’s supplest insight is in its recognition of the possibility for such change. In our world of hybrid culture and widely marked disability, the shadings of identity may have grown grayer, more complex, than they have ever been. But that’s a good thing. The real progress of civilization is made not by tribes but by the people in them, reaching far.