The press abounds with heartwarming stories of surgical interventions, such as that of Chris Wallace, the boy born with clubfeet who now plays pro football. “I love my feet,” he has said. People who seek surgical interventions almost always speak in terms of correction. Transgender people speak of sex-reassignment procedures as a means of remedying a birth defect. Those who champion cochlear implants for deaf people use the same rhetoric. The line between cosmetic intervention—what some call “technoluxe”—and corrective procedures can be a fine one, as can the line between becoming one’s best self and conforming to oppressive social norms. What about the mother who has her daughter’s ears pinned because she is being teased at school, or the man who seeks a surgical antidote to his baldness? Such people may be eliminating a problem, or they may merely be caving to peers.
Insurance companies deny coverage for many corrective procedures on grounds that they are cosmetic. In fact, a cleft palate can cause disfiguration, difficulty eating, ear infections that lead to hearing loss, severe dental problems, speech and language impairments, and—perhaps as a consequence of all this—severe psychological problems. Lucy Grealy’s lack of a jawbone might not have been considered a crucial loss by some people, but for her it was mortal. Conversely, even a positive surgical outcome can pose difficulty for parents. On a website for parents of children with cleft palates, Joanne Green writes, “The doctor tells you that everything went perfectly. So why, then, when you see the baby, does everything look anything but perfect? Your sweet, laughing, loving, trusting, happy baby of two hours ago is now sick and hurting. And then you will take a good look at the face. Not the suture line, not the swelling, but the face. And you will be shocked at the difference you will see in your baby’s face. Very few parents are initially thrilled with the surgery. The baby will almost seem to be another baby. After all, you loved the old one!”
How urgent is any problem and how dire is the solution? That is the proportion that must be entertained. It is always both essential and impossible to tease apart the difference between the parents’ wanting to spare the child suffering and the parents’ wanting to spare themselves suffering. It is not pleasant to be suspended between two ways of being; when I asked a dwarf what she thought of limb-lengthening, a process undertaken in childhood that can give someone the normalized appearance of average height, she said that it would just make her “a tall dwarf.” At best, medical interventions allow people to move from the margins toward a more accommodating center; at worst, they leave people feeling further compromised and no less alienated. Alice Domurat Dreger, who has written about transgenderism and about conjoined twins, averred, “Far from feeling like a rejection of the child, normalization surgery may feel to some parents like a manifestation of full love and unconditional love. But parents may also seek surgical fixes 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.”
People of higher socioeconomic status tend toward perfectionism, and have a harder time living with perceived defects. One French study said baldly, “The lower classes show a higher tolerance for severely handicapped children.” An American study bears out that conclusion, inasmuch as higher-income families are “more apt to stress independence and self-development,” while lower-income families emphasize “interdependence among family members.” Better-educated, more-affluent families are more likely to seek placement for children, and white families do so more often than minority families, though disturbingly high numbers of minority parents lose children to foster care. I did back-to-back interviews with a wealthy white woman who had a low-functioning autistic son, and an impoverished African-American woman whose autistic son had many of the same symptoms. The more privileged woman had spent years futilely trying to make her son better. The less advantaged woman never thought she could make her son better because she’d never been able to make her own life better, and she was not afflicted with feelings of failure. The first woman found it extremely difficult to deal with her son. “He breaks everything,” she said unhappily. The other woman had a relatively happy life with her son. “Whatever could be broken got broken a long time ago,” she said. Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.
A child may interpret even well-intentioned efforts to fix him as sinister. Jim Sinclair, an intersex autistic person, wrote, “When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.’ Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.” There are both additive and subtractive models of most conditions: either the person has an invasive condition that can be removed, such as an infection, or the person has been diminished by the condition, as when an organ gives out. Layers of illness or variance may be piled on top of a persisting “normal” person, who is obscured by them—or the condition may be integral to the person. If we give a deaf person hearing, are we releasing him into fuller selfhood, or compromising his integrity? Does reforming a criminal’s mind give him a more authentic self, or just one that suits the rest of us? Most parents suppose that an authentic nonautistic self is hidden inside autistic people, but Sinclair and many others with autism do not see anyone else inside them, any more than I would see a straight person—or a pro baseball player—locked away within me. It is not clear that we can set free the child planned through love within a child conceived in rape. Perhaps genius, too, can be seen as an invasive illness.
Aimee Mullins was born without fibula bones in her shins, and so her legs were amputated below the knee when she was a year old. Now she is a fashion model with prosthetic legs. “I want to be seen as beautiful because of my disability, not in spite of it,” she said. “People kept asking me, ‘Why do you want to get into this world that’s so bitchy and so much about physical perfection?’ That’s why. That’s why I want to do it.” Bill Shannon, who was born with a degenerative hip condition, devised a break-dancing technique using crutches and a skateboard. He developed a cult following on the avant-garde dance scene for the work he described as a natural outgrowth of his efforts to retain mobility. He was courted by Cirque du Soleil, but since he didn’t envision himself as a Vegas entertainer, he agreed to train someone else in his routines. He taught an able-bodied performer how to move around on crutches just as he had. Cirque du Soleil’s act “Varekai,” which uses Shannon’s technique and choreography, has been a huge success. Shannon’s disability is not a risible spectacle, but the wellspring of a provocative and original enterprise. More recently, Oscar Pistorius, a South African who has two prosthetic lower legs, was ranked among the top 400-meter racers in the world and competed in the London Olympics in 2012. Time magazine named him one of the hundred most influential people in the world, and he has endorsement contracts with Nike and Thierry Mugler. Some kinds of grace would not have entered the world if everyone’s hips and legs worked the same way. Deformity has been brought into beauty’s fold, a catalyst for justice rather than an affront to it, and society has changed enough to marvel at a dancer on crutches, a model with prosthetic legs, an athlete whose speed relies on carbon-fiber calves.
Flaunting the visible technologies that compensate for a disability, as Mullins, Shannon, and Pistorius do, can empower those who use them. For many people, however, such trumpeting of their reliance on robotics is inconceivable. I suffer from depression and spent ten years seeking effective treatment for it. As someone whose ability to function would be compromised without psychotropic medications, I know the weird discomfort of recognizing that without enhancements I’d be someone else. I’ve also felt ambivalence about upgrading my e
motional life, and I sometimes feel that I’d be truer to myself if I were morose, withdrawn, and hiding in bed. I know why some people make the choice not to medicate. Bewildered doctors and uncomprehending parents often question disabled people who reject the latest procedures and devices. Those disabled people, however, may be angered by the prospect of interventions that would make them function more like nondisabled people without mitigating the hard reality of their disabling condition. Some may even curse the contraptions that keep them going: dialysis, medication, wheelchairs, prosthetics, voice-processing software. I began taking psychotropic medications well past the age of consent and feel some ownership of the decision. Many interventions, however, have to occur at a much earlier age. The parents and doctors who pursue surgical corrections and early intervention for infants initiate a life narrative that they deem morally and pragmatically right, but they can never fully anticipate what will come of their decisions.
• • •
The disability rights movement assumes that most people who are alive are glad to be alive, or would be if they had adequate supports—that the wish to be dead is as aberrant among the disabled as in anyone else. Nonetheless, individuals have been named as plaintiffs in successful suits against their own birth, complaints generally brought by their parents on their behalf. The principle extrapolates from wrongful death, which results from physician negligence, and wrongful birth, which can be claimed when a family has not received adequate prenatal counseling. Wrongful-birth suits are brought by parents in their own names and will compensate only for costs they incur as parents—usually for care and support until the child is eighteen. Wrongful life compensates the disabled person rather than his or her parents and may entail funds across a lifetime. A wrongful-life suit purports to cover not a loss but a gain: the fact of someone’s existence.
In 2001, France’s highest appeals court awarded a large sum to a child with Down syndrome for “the damage of being born.” The court stipulated that “the child’s handicap is the actual damage to be compensated, and not his loss of happiness”—meaning that he deserved financial compensation for the indignity of being alive. The same court later granted compensation to a seventeen-year-old born mentally disabled, deaf, and nearly blind, saying that if his mother’s gynecologist had diagnosed rubella during pregnancy, she would have had an abortion and her son would not have experienced a lifetime of pain. Disabled French people went ballistic about the implication that being dead was better than being handicapped. One father said, “I do hope that is not the way the rest of society looks upon our children—since this would be unbearable.” In response to extensive protests, the French legislature outlawed wrongful-life suits.
In the United States, the idea of wrongful life has been validated in four states, although twenty-seven others have explicitly rejected it. Nonetheless, wrongful-life suits have been brought in connection with Tay-Sachs disease, deafness, hydrocephalus, spina bifida, rubella syndrome, Down syndrome, and polycystic kidney disease, and the courts have given awards, most strikingly in Curlender v. Bio-Science Laboratories. A couple who underwent genetic screening were not told they were carriers for Tay-Sachs; they had a daughter with the condition who died at the age of four. They argued, “The reality of the ‘wrongful-life’ concept is that such a plaintiff both exists and suffers. Had defendants not been negligent, the plaintiff might not have come into existence at all.” They received compensation for the cost of care, and damages for parental pain and suffering.
Although wrongful-life cases address an ontological question about what kind of life is worth living, this is hardly what prompts them. Being disabled entails colossal expense, and most parents who launch wrongful-life suits do so in an attempt to guarantee care for their children. In an ugly twist, mothers and fathers must discharge the obligations of responsible parenting by stating in legal documents that they wish their children had never been born.
Some people can bear a great deal of pain and still experience great happiness, while others are made unrelentingly miserable by less acute pain. There’s no way to know how much pain any particular baby can cope with, and by the time the parents form accurate perceptions of this, social prohibitions, legal strictures, and hospital policies make it exceedingly difficult to discontinue treatment. Even among self-aware adults, many people with apparently barren existences cling to life, while others with enviable situations kill themselves.
• • •
Over ten years, I interviewed more than three hundred families for this book, some briefly and some in depth, producing nearly forty thousand pages of interview transcripts. I interviewed but did not write about irreligious parents of fundamentalist children; parents of children with dyslexia and other learning disabilities; parents of obese children and of addicted children; parents of giants with Marfan syndrome, of limbless children with phocomelia syndrome, and of adult “thalidomide babies”; parents of premature babies; parents of depressed and bipolar children, of children with AIDS or cancer. I talked to parents who had adopted disabled children or children of a different race from another country. I talked to parents of intersex children who couldn’t decide in what gender to raise them. I talked to the parents of supermodels, of bullies, and of the blind.
It would have been easier to write a book about five conditions. I wanted, however, to explore the spectrum of difference, to show that raising a child of extraordinary abilities is in some ways like raising a child of reduced capacities, to show that a child’s traumatic origin (rape) or traumatic acts (crime) can have surprising parallels to the condition of his mind (autistic, schizophrenic, prodigious) or of his body (dwarfism, deafness). Each of the ten categories I explored poses a unique but related set of questions, which together describe the spectrum of issues faced by parents of children with horizontal identities. I found excellent scholarship on each of my individual topics, and some on the smaller collective topics (general books on disability, on retardation, on genius), but nothing addressing this overarching issue of illness and identity.
Each of these chapters poses a particular set of questions, and taken together, they indicate a spectrum of issues faced by parents of children with horizontal identities, and by those children themselves. The six chapters that follow this one deal with categories long classified as illnesses, while the four that follow those describe categories that appear to be more socially constructed. I have relied primarily on American and British interview subjects, but investigated one non-Western context in which what we perceive as an aberrant illness is commonplace—by studying congenital deafness in a village in northern Bali—and one non-Western context in which what we perceive as an aberrant identity is commonplace—by interviewing Rwandan women who conceived children in rape during the 1994 genocide.
Though I have gathered statistics, I have relied primarily on anecdotes because numbers imply trends, while stories acknowledge chaos. If you talk to a family, you have to process conflicting narratives, trying to reconcile the genuine beliefs—or canny manipulations—of various parties. I worked on a psychodynamic model according to which people’s interactions with me in the microcosm of journalistic neutrality indicated how they interact with the world. Throughout, I refer to members of the families I interviewed by first name. I do this not to create a gloss of intimacy, as self-help books often try to do, but because various members of families share last names, and this is the least cumbersome way to keep track of my subjects.
I had to learn a great deal to be able to hear these men and women and children. On my first day at my first dwarf convention, I went over to help an adolescent girl who was sobbing. “This is what I look like,” she blurted between gasps, and it seemed she was half laughing. “These people look like me.” Her mother, who was standing nearby, said, “You don’t know what this means to my daughter. But it also means a lot to me, to meet these other parents who will know what I’m talking about.” She assumed I, too, must be a parent of a child with dwarfism; when she learned
that I was not, she chuckled, “For a few days, now, you can be the freakish one.” Many of the worlds I visited were animated by such a fierce sense of community that I experienced pangs of jealousy. I would not wish to trivialize the difficulty of these identities, but I knew about that going in. The revelation was all the joy.
While denying the anger and tedium of parenting can be crushing, dwelling on it is also a mistake. Many of the people I interviewed said that they would never exchange their experiences for any other life—sound thinking, given that exchange is unavailable. Cleaving to our own lives, with all their challenges and limitations and particularities, is vital. And that should not be exclusively a horizontal principle; that should be handed down from generation to generation with the silver spoons and the folktales from the old country. The British critic Nigel Andrews once wrote, “If something or someone doesn’t work, it’s in a state of grace, progress, and evolution. It will attract love and empathy. If it does work, it has merely completed its job and is probably dead.”
Having a severely challenging child intensifies life. The lows are almost always very low; the highs are sometimes very high. It takes an act of will to grow from loss: the disruption provides the opportunity for growth, not the growth itself. Constant high levels of stress may age parents of profoundly disabled children, making them crankier and more vulnerable, yet some cultivate a deep and abiding resilience. It turns out they have grown more skilled at handling other life stresses. Even as the downside wears you thin, the upside keeps on giving. The more difficult the problem, the more profound these positives may be. One study explains, “Mothers reporting higher levels of caregiving demands for their child with intellectual disability also reported more personal growth and maturity.” The Canadian scholar Dick Sobsey, himself the father of a disabled child, and his colleague Kate Scorgie write, “Parents of children with relatively mild disabilities may be more likely to adjust or accommodate by making minor or superficial changes. Conversely, parents of children with more severe disabilities may find it more difficult or impossible to go on with their lives as before and, as a result, may be more likely to undergo transformations.” Positive transformations are achieved when initial disequilibrium, which is traumatic and brief, gives way to psychic reorganization, which is gradual and enduring. It would appear to be true that what doesn’t kill you makes you stronger.
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