Adapted from the foreword to the new book, About Us: Essays From The Disability Series of the New York Times.
The eugenic movement spearheaded by Francis Galton in England in the late Victorian period reached a culmination in the view that if you got rid of the misfits, you could breed a pure, advantaged race. The reach of the movement was reflected in the American campaigns to sterilize disabled people, supported in a 1927 Supreme Court decision in which Oliver Wendell Holmes wrote, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles are enough.”
Drawing on these sources, Hitler began his campaigns of genocide by gassing the disabled, presuming not only that they were polluting the larger population, but also that they were a group no one would miss. Genetic determinism presumed that the weak and disadvantaged passed along their weakness and disadvantage, and that a systematic campaign of eliminating all but the best and strongest could improve the lot of humanity.
There are two entwined arguments here, one about who makes disabled children, and the other about the worth of the lives of those disabled children. What sort of parents have children with disabilities? Every sort of parent. Nondisabled parents produce disabled children with startling regularity — and disabled people produce nondisabled children time and again. So that part of the argument is specious, at least when applied so specifically as Galton, Holmes and Hitler contemplated. More relevant to us today is the modern argument that whether disability is passed along generationally or not, it has inherent worth, and the loss of it from our society would be a troubling depletion of human diversity. That is a more radical, philosophical challenge.
Disabled lives are lives, and are charged with inherent dignity. Most people with disabilities don’t wish they had never been born; most people with disabilities contribute to the world they inhabit; most people with disabilities both give more to and get more from life than their nondisabled peers may be inclined to guess. Some have rich lives despite their disability, but others would say they have rich lives at least in part because of their disability.
In 1968, the ethicist Joseph Fletcher wrote in The Atlantic Monthly, that esteemed journal of liberal thought, that there was “no reason to feel guilty about putting a Down’s syndrome baby away, whether it’s ‘put away’ in the sense of hidden in a sanatorium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person.”
A lot of ink has been spilled covering our society’s gradual embrace of women’s rights, then racial rights, and most recently, gay rights. The shift in attitudes toward disability has been nearly as powerful, if less complete, but it has been much quieter. Today, no one would publish an article in the mainstream media that championed dehumanizing a group of disabled people as Joseph Fletcher did. What was once par for the course has become unthinkable.
What we wouldn’t have opted into is not the same as what we’d now like to change.
Though utilitarian philosophers such as Peter Singer have proposed that parents should have the right to murder their disabled newborns, these views are deliberately polemical, widely protested abhorrent to most people who encounter them. We have learned to value most people, and with that social advancement has come progress in improving their lives. Acceptance is protection. People with Down syndrome live nearly twice as long as they did in 1968, and many hold down jobs; some are writers or actors or models; some live at least semi-independently. That progress reflects an opening up of a society that no longer experiences the birth of a disabled child as an unmitigated tragedy, that no longer assigns chronic sorrow to the parents.
This more accepting and celebratory point of view has some ascendancy in the United States, but is a work in progress both here and globally; what constitutes an identity in one society or family may be a disability in another. The sociologist Ashton Applewhite quoted a matador who said, “The bull looks different when you’re inside the ring.” Disability is very different for disabled people than it looks to nondisabled people. What we wouldn’t have opted into is not the same as what we’d now like to change.
It’s hard to remember how strong the arguments were that women were lesser than men, that black people were lesser than white people, that gayness was a crime, a sin, and a disease in search of a cure. It can be hard to realize how many people still make these arguments, how many hated living under the authority of an African-American president and how many abhor the idea of a female president, how many would deny basic services to gay and trans people, how many regard the disabled with polite disdain.
Our society is rife with glass ceilings, and the disability ceiling has the fewest cracks in it. When I attended the 2018 annual convention of The Arc, the country’s largest and oldest organization for people with intellectual and developmental disabilities, I was struck by how seldom we see in common life what I saw there: the meeting of disabled and nondisabled people as equals.
Increasingly, decisions about what kind of child to have are made prenatally, either through preimplantation genetic diagnosis or through amniocentesis. An image of disability is set at the birth of a newborn child. But predictions about any individual life are always hypothetical and often wrong. In interviewing hundreds of parents of children with disabilities, I found a recurring theme of indignation from parents whose children had achieved much more — or much less — than doctors had anticipated. A baby, disabled or not, is a cipher, and only time will show how and what he or she will do.
Creating an atmosphere of false hope can be catastrophic; it sets families up for renewed despair with every milestone their child misses. But presuming the worst often results in the worst results; low expectations can be a self-fulfilling prophecy.
Doctors who deliver prognostications are usually representing averages. On average, certain conditions bestow certain degrees of disability, but brains and bodies are highly adaptive, and the skills of an individual child can surprise everyone. It is a tough call for doctors. Creating an atmosphere of false hope can be catastrophic; it sets families up for renewed despair with every milestone their child misses. But presuming the worst often results in the worst results; low expectations can be a self-fulfilling prophecy. A tempered realism about the vagaries and uncertainties often obtains the best result, but parents crave assurances and doctors too often indulge that inclination.
The mother of a man with diastrophic dwarfism, a very disabling condition, described to me how for the first year of her son’s life, every doctor she saw rattled off a catalog of what was likely to go wrong and asked her if she was prepared to deal with it all. When her son was a year old, a doctor who specialized in skeletal dysplasias lifted the baby up, held him aloft in the light, and said, “Let me tell you. That’s going to be a handsome young man one day.” The rewarding life she was to have with her son began that very day, a fact she reflected on when we chatted at his joyous wedding years later.
The expectations with which a child is raised may have a strongly determining effect on what that child can do. Parents must hope for the best, but also believe that life will have meaning even with a child who achieves limited functioning. The process of forging meaning does wonders for both parents and child. A recent study looked at children with various complications at birth and found, simply, “The children of mothers who had tried harder to find meaning had a better developmental outcome.” How we frame disability determines how we live it, and if it is defined as calamitous from the start, the job of finding meaning is steeper than it need be. The fact that you wouldn’t have chosen something doesn’t mean that you can’t find joyful meaning in it.
Every condition manifests in a mix of inherent challenges, access challenges, and social challenges. Many people with achondroplasia (the most common form of dwarfism) have spinal compression and need surgery for it. We can fix social attitudes toward people with dwarfism all we want, and spinal decompression procedures will neither be obviated nor become pleasant. They are an inherent challenge of the condition. Challenges of access are amply addressed by the Americans With Disabilities Act and we recognize the need for accommodations to address them, but though things are much better than they were on this front, problems persist. So, someone with achondroplasia may be unable to reach the cereal at the local supermarket. The solution to this problem is not to make the LP (little person) taller, but to build grocery stores with lower shelving — or at least to give customers some tools or assistance that allow them to retrieve what they want to put in their cart. Because achondroplasia is a relatively infrequent disability, there are no standards for addressing high grocery shelves. That is a challenge of access.
The social challenges are the most pernicious. It is tough for dwarfs that people stare at them and try to make iPhone videos of them when they are quietly leading their regular lives. People try to joke with them; they say derogatory things in plain earshot. They plan parties at which dwarfs are the extraordinary entertainment. There is no escape from the intrusive exoticizing. These social problems of intractable rudeness are obdurate. An intellectually disabled person may not be able to parse difficult texts at the library; a physically disabled person may not be able to get up the front steps to that same library; someone with a speech impediment may be dealt with patronizingly there. We can’t make good policy unless we acknowledge that all three challenges — inherent, access, and social — are almost always in play.
The burden of being perceived as different persists, and it can generate isolation and rage. The best solution to this problem is community.
Negative views of disability are deeply rooted in tradition. The evil of Shakespeare’s Richard III was inseparable from his hunchback. The disabled body was morally suspect. In Henry VI, Part 3, Gloucester (who would become Richard III) says bitterly, “Since the heavens have shaped my body so, / Let hell make crooked my mind to answer it.” Disability was an invitation to degenerate behavior. He goes on, “And this word ‘love,’ which graybeards call divine, / Be resident in men like one another / And not in me: I am myself alone.”
To be found grotesque is often to become grotesque; we fit other people’s perceptions of us and grow into what they see. Forced into isolation by a deformity, the disabled man is infected with rancor that has no other occasion. Though we’ve disavowed Shakespeare’s association between deformity and evil, the burden of being perceived as different persists, and it can generate isolation and rage. The best solution to this problem is community.
That there are now widely read platforms such as this one, in which people with disabilities tell our own stories, points to the new ways communities are being built and acknowledged; and those who read them may find redemptive community in these words. This is not to say that if Richard III had belonged to a chat group of other hunchbacks he would have been a cheerful fellow, but only to comment that unmitigated outsiderness has always been poisonous and remains so.
Disabled lives are as valid as nondisabled lives, but they are not the same. This quest to assert equality without making false claims of equivalence echoes the quest of the women’s movement, the civil rights movement, and the gay rights movement.
Isolationism is a national policy of separating your country from dependence on others, and I believe it has been overplayed of late. It has its human equivalent in the elevation of personal independence: independence of children from parents, of parents from extended family, of extended family from the society around them. We admire the ability of people to stand on their own two feet and to function without reliance on social supports. Pundits disparage those who depend on public funding. But where has this modern, Western value originated?
Independence is not so brave a value as we often insist, and it is also almost impossible; we live in a collective fabric, all our lives entwined with the lives of others. Human beings are social animals. Disabled people are often dependent on other people, and in our lionization of self-sufficiency, we see that as a weakness. But dependency has its own particular poetry. It is a fundamental aspect of intimacy, a defining quality of love.
When I first came across inclusion and mainstreaming as educational strategies, I thought they must be lovely for the disabled people whose position was advanced. But I thought it might be tough on the nondisabled people, whose progress would inevitably be slowed down by the accommodations that their disabled classmates required. Now, having been in many such classrooms, I can say that the primary advantage redounds to the nondisabled children, who grow up less afraid of difference than they would otherwise be, more receptive to the intense humanity of their fellow students. They do not think that independence is success and dependence is failure. This can allow them more willing to acknowledge their own dependence, to tolerate their own vulnerability.
Our work is to seek for meaning in who we are rather than in who we might have wished to be.
Until Jason Kingsley, who has Down syndrome, began appearing on Sesame Street in the 1970s, there had been almost no disabled children publicly visible since the Victorian era, when the disabled were often sentimentalized and gathered at the family hearth. In the 20th century, people whose children were disabled tended to hide them, seldom taking them into the market squares or shopping malls or restaurants or theaters where human beings come into contact with strangers. They were squirreled away at home or ferried to institutions, an exhausting embarrassment.
Now, disabled people are more visible than ever. We live in a time of great social progress, when that visibility has been achieved — but we also live in a time of great medical progress, and at the same time that many forms of disability are being acknowledged as identities, they are becoming subject to cure. I believe in social progress and I believe in medical progress, but it would be tremendous for them to be more awake to each other. Disability may coexist with shocking ability; indeed, the shocking ability may rise in part from the depth of consciousness required of people who are disabled and who have to figure out an often bewildering world through their particular consciousness. To imagine, and I use the most obvious example, Stephen Hawking without disability is to imagine someone else entirely.
I come to this movement for rights through my struggle with depression, a mental illness that can earn you disability stripes. Depression’s up side is substantial; I’ve learned a lot from my depression. If I had my life to do over, however, I’d wish it away. I pray that it never afflicts my children. I also belong, as we all do, to myriad other minorities. If I imagine myself without dyslexia, without A.D.D., without depression, without gayness, without nearsightedness, without orthostatic hypotension, without Jewishness, without white privilege, without prosopagnosia, then there’s very little of me left. We are mostly an accumulation of strengths and weaknesses, of pathologized and nonpathologized conditions and identities.
My grandmother used to say, “Everybody’s got something.” Our work is to seek for meaning in who we are rather than in who we might have wished to be. It may be easier in the United States as it’s currently constructed to be white than it is to be of color, but most people of color do not spend their time wishing they had pale skin and golden hair. Women may know that men have more privilege, but women don’t in general experience that difference as one they would address by switching gender. We are our authentic selves, striving for justice, and the rest is commentary.