Nevertheless, it is easier for parents to tolerate the syndromes assigned to nature than those thought to result from nurture, because guilt is reduced for the former category. If your child has achondroplastic dwarfism, no one will accuse you of bad behavior for having produced such a child. However, an individual’s success at accommodating his own dwarfism and valuing his own life may be largely a function of nurture. If you have a child conceived in rape, you may encounter some blame—either for the rape itself, or for your decision not to abort the pregnancy. If you have a child who has committed serious crimes, it is often assumed that you did something wrong as a parent, and people whose children do not commit crimes may condescend accordingly. But there is increasing evidence that some criminality may be hardwired, and that even the most admirable moral instruction may be ineffective in swaying a child who is so predisposed to gruesome acts that, in Clarence Darrow’s phrase, his murderous crime “was inherent in his organism, and came from some ancestor.” You can enable or discourage criminal tendencies, but the result in either direction is by no means guaranteed.
The social perception of whether any supposed deficit is the parents’ fault is always a critical factor in the experience of both children and parents. The Nobel Prize–winning geneticist James D. Watson, who has a son with schizophrenia, once told me that Bruno Bettelheim, the midcentury psychologist who asserted that autism and schizophrenia were caused by poor parenting, was “after Hitler, the most evil person of the twentieth century.” The attribution of responsibility to parents is often a function of ignorance, but it also reflects our anxious belief that we control our own destinies. Unfortunately, it does not save anyone’s children; it only destroys some people’s parents, who either crumble under the strain of undue censure or rush to blame themselves before anyone else has time to accuse them. The parents of a woman who had died of a genetic illness told me they felt terrible because they hadn’t had prenatal genetic testing, which did not exist at the time their daughter was born. Many parents similarly organize their guilt around some fictitious misstep. I had lunch one afternoon with a highly educated activist whose son suffers from severe autism. “It’s because I went skiing while I was pregnant,” she said to me. “The altitude isn’t good for the developing child.” I felt so sad hearing this. The roots of autism are confusing, and there are questions as to what may dispose children toward the condition, but altitude is not on the list. This intelligent woman had so assimilated a narrative of self-blame that she didn’t know that it had come out of her imagination.
There is something ironic in prejudice against the disabled and their families, because their plight might befall anybody. Straight men are unlikely to wake up gay one morning, and white children don’t become black; but any of us could be disabled in an instant. People with disabilities make up the largest minority in America; they constitute 15 percent of the population, though only 15 percent of those were born with their disability and about a third are over sixty-five. Worldwide, some 550 million people are disabled. The disability-rights scholar Tobin Siebers has written, “The cycle of life runs in actuality from disability to temporary ability back to disability, and that only if you are among the most fortunate.”
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In typical circumstances, to have children who won’t care for you in your dotage is to be King Lear. Disability changes the reciprocity equation; severely disabled adults may still require attention in midlife, when other grown children are attending to their own parents. The most effortful stages of dealing with a child with special needs are generally held to be his first decade, when the situation is still novel and confusing; the second decade, because cognizant disabled adolescents, like most teenagers, feel the need to defy their parents; and the decade when the parents become too impaired to continue to provide care and worry acutely about what will happen to their child after they are gone. This account fails, however, to reflect that the first decade does not vary so much from the norm as the subsequent ones do. Taking care of a helpless disabled infant is similar to caring for a helpless nondisabled infant, but continuing to tend to a dependent adult requires a special valor.
In an oft-cited 1962 article, the rehabilitation counselor Simon Olshansky bluntly wrote, “Most parents who have a mentally defective child suffer chronic sorrow throughout their lives regardless of whether the child is kept at home or ‘put away.’ The parents of a mentally defective child have little to look forward to; they will always be burdened by the child’s unrelenting demands and unabated dependency. The woes, the trials, the moments of despair will continue until either their own deaths or the child’s death. Release from this chronic sorrow may be obtainable only through death.” One mother of a twenty-year-old with severe disabilities said to me, “It’s as if I’d had a baby every year for the past twenty years—and who would choose to do that?”
The difficulties such families face have long been acknowledged by the outside world; only recently have the pleasures become a topic of general conversation. Resilience is the contemporary gloss on what used to be thought of as perseverance. It is both a way to reach larger objectives—functionality and happiness—and an objective in itself, inseparable from what Aaron Antonovsky, progenitor of the study of resilience, calls a “sense of coherence.” Parents whose expectations are diverted by children with horizontal identities need resilience to rewrite their future without bitterness. Those children need resilience, too, and ideally parents foster it. Ann S. Masten wrote in American Psychologist in 2001, “The great surprise of resilience research is the ordinariness of the phenomenon.” Resilience used to be posited as an extraordinary trait, seen in the Helen Kellers of the world, but cheery recent research suggests that most of us have the potential for it, and that cultivating it is a crucial part of development for everyone.
Even so, more than a third of parents of children with special needs report that caring for them has negative effects on their physical and mental health. Researchers designing a study of the effects of sustained stress on aging settled on bringing up a child with special needs as a universally acknowledged stressor. Comparing women who had had that experience with women who had not, they found the caretakers had shorter telomeres—the protection at the end of a chromosome—than the control group, which meant that they were aging more rapidly at the cellular level. Taking care of disabled children causes your biological age to outpace your chronological age, which is associated with premature rheumatic conditions, heart failure, reduced immune function, and earlier death through cell senescence. One study reported that fathers who described a significant caregiving burden died younger than fathers with a lighter caregiving burden.
This is true, and so is its opposite. One study found that 94 percent of parents with disabled kids said they “were getting along as well as most other families” without such children. Another said that most parents they surveyed believe “that this has brought them closer to their spouse, other family members, and friends; taught them what’s important in life; increased their empathy for others; engendered personal growth; and made them cherish their child even more than if he or she had been born healthy.” Yet another found that 88 percent of parents of children with disabilities felt happy when they thought about their child. Four out of five agreed that the disabled child had made their family closer; and a full 100 percent endorsed the statement “I have increased compassion for others due to my experience.”
Buoyancy may bring about the results it would appear to reflect; the children of mothers initially rated as optimists had more advanced skills at two than did the children in similar condition of pessimistic mothers. The Spanish philosopher Miguel de Unamuno wrote, “It is not usually our ideas that make us optimists or pessimists, but it is our optimism or pessimism that makes our ideas.” Disability is not predictive of the happiness of either the parent or the child, which reflects the larger puzzle that people who have won the lottery are, in the long run and on average, only marginally happier th
an amputees—people in each category having adjusted rather quickly to their new normal.
The popular life coach Martha Beck wrote a passionate book about the “lovely epiphanies” she experienced in tending to her son with Down syndrome. The writer Clara Claiborne Park said in the 1970s of her autistic daughter, “I write now what 15 years past I would still not have thought possible to write: that if today I were given the choice to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands—because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.” One of the mothers I interviewed said she had had no sense of purpose until her son was born with severe disabilities. “Suddenly, I had this object for all my energy,” she explained. “He gave me a whole new reason to be alive.” Such responses are not uncommon. One woman wrote, “This thought runs like a bright golden thread through the dark tapestry of our sorrow. We learn so much from our children—in patience, in humility, in gratitude for other blessings we had accepted before as a matter of course; so much in tolerance; so much in faith—believing and trusting where we cannot see; so much in compassion for our fellow man; and yes, even so much in wisdom about the eternal values in life.” When I worked in a juvenile prison, a long-serving correctional officer there exhorted her bevy of felons, “You gotta take your mess and find yourself a message!”
While optimism can propel day-to-day life forward, realism allows parents to regain a feeling of control over what is happening and to come to see their trauma as smaller than it first seemed. The potential pitfalls are wishful thinking, self-blame, escapism, substance abuse, and avoidance; resources might include faith, humor, a strong marriage, and a supportive community, along with financial means, physical health, and higher education. There is no definitive roster of strategies, although words such as transformation and enlightenment occur. Studies are highly contradictory and seem often to reflect researcher bias. Numerous studies, for example, show that divorce is more frequent among parents of children with disabilities, and an equal number show the divorce rate is significantly lower among such parents; further research finds divorce rates consistent with those in the general population. Parents who cope poorly with a disabled child are worn down by the effort in the same way that parents who are coping successfully seem to grow strong, but all of them are both worn down and strengthened. Being part of a group seems consistently to have meaning; the redemptive power of intimacies born from struggle is immense. In our Internet age, when every challenge or disability has a community attached to it, the parents of people with any given challenge can find their horizontal community as well. Although most families do find meaning in their predicament, fewer than one in ten professionals who deal with them believes it. “I was determined not to be around folks who saw us as tragic,” one exasperated mother wrote. “Unfortunately, that included my family, most professionals, and just about everyone else I knew.” A doctor’s or social worker’s refusal to recognize such parents’ reality because it is happier than anticipated is a kind of betrayal.
Perhaps the most difficult prospect facing parents of challenged children is institutionalization: a practice that is now more euphemistically—if cumbersomely—called out-of-home placement. Institutionalization used to be the norm, and parents who wanted to keep their disabled children at home had to fight a system designed to take them away. That all began to change in 1972, after the exposure of the horrific conditions at Willowbrook, a home for the mentally retarded in Staten Island, New York. Unethical medical research had been conducted on residents, and the place was grotesquely overcrowded, with deplorable sanitary facilities and physically abusive staff. “Untended, some smeared with their own feces, many of the children were unclothed and all were simply left to sit in the ward all day,” according to the New York Times. “The only sound picked up by the technicians was something of an eerie communal wail.” Patients at such facilities experienced “institutionalism,” a condition marked by withdrawal, loss of interest, submissiveness, lack of initiative, impaired judgment, and reluctance to leave the hospital setting, which one researcher likened to “mental bedsores.”
After Willowbrook, placing children became suspect. Now, parents whose children are impossible to cope with have a tough time finding an appropriate placement and must confront a system that can make them feel irresponsible for pursuing this option. The pendulum needs to swing to an appropriate middle. The question is never easy; as with abortion, people should be able to make the choice that is right for them without having to feel worse about it than they already do. Disabled children are now supposed to live in the “least restrictive environment,” a laudable objective that should ideally apply to other family members as well. As one researcher has pointed out, “Placing many severely handicapped children and youth in the least restrictive environment of their families results in their family being required to live in a highly restrictive manner.” The child, the parents, and the siblings are all deeply affected by placement decisions.
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My study is of families who accept their children, and how that relates to those children’s self-acceptance—a universal struggle we negotiate partly through the minds of others. In turn, it looks at how the acceptance of the larger society affects both these children and their families. A tolerant society softens parents and facilitates self-esteem, but that tolerance has evolved because individuals with good self-esteem have exposed the flawed nature of prejudice. Our parents are metaphors for ourselves: we struggle for their acceptance as a displaced way of struggling to accept ourselves. The culture is likewise a metaphor for our parents: our quest for high esteem in the larger world is only a sophisticated manifestation of our primal wish for parental love. The triangulation can be dizzying.
Social movements have debuted in sequence: first religious freedom, women’s suffrage, and race rights, and then gay liberation and disability rights. That last category has become a catchall for difference of many kinds. The women’s movement and the civil rights movement were focused on vertical identities, so they gained traction first; the horizontal identities could not emerge until the pattern had been set by those with greater strength. Each of these movements borrows unabashedly from the ones before, and now some borrow from those that followed them.
Preindustrial societies were cruel to those who were different, but did not segregate them; their care was the responsibility of their families. Postindustrial societies created benevolent institutions for the disabled, who were often whisked away at the first sign of anomaly. That dehumanizing tendency set the stage for eugenics. Hitler murdered more than 270,000 people with disabilities on the grounds that they were “travesties of human form and spirit.” The presumption that disability could be extirpated was current worldwide. Laws to permit involuntary sterilization and abortion were passed in Finland, Denmark, Switzerland, and Japan, as well as in twenty-five American states. By 1958, over sixty thousand Americans had been forcibly neutered. Chicago passed an ordinance in 1911 that decreed, “No person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object in or on the public ways or other public places in this city, shall therein or thereon expose himself to public view.” It stayed on the books through 1973.
The disability rights movement seeks, at the most basic level, to find accommodation of difference rather than erasure of it. One of its signal successes is to understand that the interests of children, parents, and society do not necessarily coincide, and that the children are the least able to stand up for themselves. Many people with profound differences maintain that even well-run asylums, hospitals, and residences are analogous to the treatment of African-Americans under Jim Crow. Medical diagnosis is implicated in this separate-and-unequal response. Sharon Snyder and David Mitchell, both academics in disability studies, contend that those who seek cures and treatments often “subjugate the ve
ry populations they intend to rescue.” Even today, American children with disabilities are four times more likely than nondisabled ones to have less than a ninth-grade education. Some 45 percent of Britons with disabilities and some 30 percent of working-age Americans with disabilities live below the poverty line. As recently as 2006, the Royal College of Obstetricians and Gynaecologists in London proposed that doctors consider killing infants with extreme disabilities.
In spite of these persisting challenges, the disability rights movement has made tremendous strides. The US Rehabilitation Act of 1973, passed by Congress over President Nixon’s veto, prohibited discrimination against people with disabilities in any federally funded program. This was followed by the Americans with Disabilities Act, passed in 1990, and several subsequent acts that appeared to shore it up. In 2009, Vice President Joe Biden opened the Special Olympics by declaring special-needs advocacy a “civil rights movement” and announcing the new post of special assistant to the president for disability policy. The courts, however, have narrowed the scope of laws pertinent to disability, and local governments have often ignored them altogether.
Members of minorities who wish to preserve their self-definition need to define themselves in opposition to the majority. The more accepting the majority is of them, the more rigorously they need to do so, because their separate identity collapses if they countenance its integration into the majority world. Multiculturalism rejects the 1950s vision of a world in which everyone is subsumed by uniform Americanness, and chooses one in which we all inhabit our own treasured particularities. In his classic work Stigma, Erving Goffman argues that identity is formed when people assert pride in the thing that made them marginal, enabling them to achieve personal authenticity and political credibility. The social historian Susan Burch calls this “the irony of acculturation”: society’s attempts to assimilate a group often cause that group to become more pronounced in its singularity.
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