“He wants to open a store where he will tell people the inner messages of Disney movies,” Emily explained. “You wait in line, he says, ‘Next!’ and you come up and say, ‘Please, Jason, would you explain the inner meaning of The Hunchback of Notre Dame?’ He would say, ‘The inner meaning is that it’s what’s inside people that counts, whether they’re a good person, and that’s more important than whether they’re beautiful. That’ll be fifty dollars, please. Next!’ You cannot explain to him that people already know this, that they don’t find it out at a store anyway. In some very, very basic ways, he’s clueless.” Emily threw up her hands. She told me mournfully, “The primary job of most parents is to make their kids think they can do anything; my primary job is to take him down. Reduced to a sentence, it’s ‘You’re not smart enough to do what you want to do.’ Do you know how much I hate having to say that?”
When Jason was twenty, his father was diagnosed with cancer, and three years later, he died. Jason became deeply depressed. Emily became depressed, too. Emily found Jason a therapist, then turned to Westchester Arc (the organization’s name was originally an acronym for Association for Retarded Citizens), where Charles had served as president of the board. She wanted to qualify for ResHab, or residential habilitation, in which support staff come to a person’s home and provide services and instruction in independent-living skills. She was tossed around in the bureaucracy until she finally broke down in tears in front of a committee and said, “My kid is destroying himself. I can’t do all of this myself.” Jason was finally given a caseworker who came in twenty hours a week. “That was a great help,” Emily said, “but I started realizing that it wasn’t enough. I had to bite the bullet and acknowledge that as smart as he is, he needs more structure and supervision. He just is not eating healthy meals at a regular time each day, or getting himself up and to work on time.”
Emily decided that Jason needed to be in a group home. “It was a feeling of failure,” she said. “We had worked so hard to make him the Down syndrome guy who didn’t need it. But I had to look at what was best for him, and not at some ideal we had built up for ourselves.” When Emily put Jason on the waiting list for a local facility, she found out that the wait was an impossible eight years. “Raising a kid like Jason,” she said, “the kid is the least of the challenges. Jason was there to put his arms around me when the bureaucracies had nearly killed me.” Services are seldom available to anyone who does not have the wherewithal to battle agencies. Doing so often requires education, time, and money—which is a painful irony given that these services are intended to benefit people who may be short on all three.
One day, Emily spotted a house for sale in Hartsdale, New York, and realized it would be a perfect group home. It had three bedrooms, enough for Jason and a companionable two friends; it was near the main bus stop, and across the street from a supermarket, a bank, and a pharmacy. Emily bought the house, then asked Arc to run it. The New York State Office of Mental Retardation and Developmental Disabilities now rents the house from Emily for the amount of her mortgage payment. Jason moved in with two of his best friends from the parties Emily had been throwing. The three receive Social Security disability checks that go straight to Arc, which spends the money to maintain and staff the house.
“They love one another,” Emily said. “They call themselves the Three Musketeers.” Jason has a job working for the local radio station, where he is happy. “I’m stepping back a little,” she said. “The ultimate job is to appreciate him for who he is—and who he is, is really terrific. Anything he’s accomplished, he’s accomplished because he really stuck to it. Nothing comes easy to him.” She paused. “He’s kept a lot of dignity in the face of that. I really, really admire him tremendously. I’m also sad for him, because he’s smart enough to know that almost everybody is accomplishing things that he’s not, smart enough to realize that his life is different.”
Even if a child never acquires the skills needed for independent living, he accumulates experience and history. “He says to me that he wants this particular video,” Emily said, “and I used to say to him, ‘You are intelligent enough to watch something better than that.’ I used to think that if I kept pushing, he would have a better life in the world. But now I think, ‘Well, if that’s what he enjoys, who am I to interfere?’ So I don’t buy things like The Brave Little Toaster, but I don’t give him a hard time if he wants to buy it for himself. You can have tulips and windmills coming out your ears, but you don’t ever get to the Uffizi, and that’s it.”
A couple of years later, Jason was depressed again, and Emily reflected with concern on her original attempt to make Jason the highest-functioning DS kid in history. She said, “With perfect hindsight would I have done it differently? His intelligence has enriched our relationship so much and I would never want to give that up, but I’ll admit that lower-functioning Down kids are happier, less obsessed with how unfair it is. They have an easier time in many ways, but is that better? He takes such pleasure in words, in using his mind.” I went to a reading at Barnes & Noble that Jason and his friend did when their book was reissued. Jason answered the audience’s questions with fluency and poise. Emily was aglow and Jason was aglow, their pleasure in his intelligence a mutual delight. The parents of children with DS who had come to hear him were aglow, too, with hope. During the book signing, people approached Jason reverently. He and Emily were heroes, and Jason loved being a hero; I could understand his loneliness, but I could not miss his pride.
Once when I was at Emily’s house, she called Jason and offered to take him and his roommates to The Pirates of Penzance. After a pause, I heard her say wistfully, “Well, okay, I guess I’ll go on my own.” The cliché is that people with Down syndrome are incredibly sweet-natured, and they are, but they are unsubtle in their thinking, and Emily’s nuanced disappointment had not registered with Jason as it might with a typical child of six or seven. “He’s not very introspective,” she said. “He doesn’t understand the origins even of his own feelings. So it’s pretty much impossible for him to be outrospective and guess what’s going on inside of me.” A few years later she said, “Actually, in some ways he is the first kid with Down syndrome who is really introspective. It’s not a boon to have Down syndrome and be introspective, because what you see when you look inside yourself are inadequacies. That’s how deep he can look into himself. Jason was talking the other day about what he might have done if he hadn’t had Down syndrome. I have never allowed myself that fantasy. It’s too dangerous for me.”
• • •
For most of recorded history, DS has not been compared to a holiday among windmills and tulips. The idea that “idiots” were amenable to amelioration originated with Jean Marc Gaspard Itard’s attempt to educate the Wild Boy of Aveyron in the early nineteenth century. His theories were then developed by his pupil Édouard Séguin, director of the Hospice des Incurables in Paris, who structured a system for assessing the intellectually disabled and was the first to recognize the merits of early treatment. “If the idiot cannot be reached by the first lessons of infancy,” he wrote, “by what mysterious process will years open for him the golden doors of intelligence?” Séguin emigrated to the United States in the middle of the nineteenth century and established institutions for the care and education of the disabled, whom he enabled to participate in civic life, often through manual labor.
Yet even as Séguin was bringing about such transformation, others argued that the cognitively disabled were not merely stupid, but evil and corrupt. The language of accusing rectitude is reminiscent of the Imaginationist argument that women who bore dwarfs did so because of their lascivious nature: deformity and disability were interpreted as evidence of failure. Samuel G. Howe’s 1848 Report Made to the Legislature of Massachusetts articulates this pre-eugenic, dehumanizing vision: “This class of persons is always a burden upon the public. Persons of this class are idle and often mischievous, and are dead weights upon the material prosperity of the state. They ar
e even worse than useless. Every such person is like a Upas tree, that poisons the whole moral atmosphere about him.”
The first person to describe Down syndrome was John Langdon Down, in 1866. He referred to his subjects as Mongoloids or Mongoloid idiots on the basis that their faces, with slightly slanted eyes, resembled those of people from Mongolia. Down proposed that human evolution had gone from black people to Asians to white people, and that white people born with Mongolism were actually a throwback to their primitive Asian antecedents—a position then considered rather progressive insofar as it acknowledged evolution.
By 1900, the jobs that had been done by Séguin’s trained individuals with mental retardation were being claimed by the great influx of immigrants, who did them more efficiently, and the institutions originally intended to educate the intellectually disabled were used to exclude them from an efficiency-oriented industrial society. Medical texts delineated how to classify someone an “idiot,” an “imbecile,” or a “moron”; eugenicists provided a spurious validation of the link between mental retardation and criminality, and laws favoring sterilization were instituted.
As late as 1924, a British scientist published material saying that these children actually were biological members of the Mongol race; that view was finally challenged in the 1930s by Lionel Penrose, a British doctor who used blood tests to prove that white people with DS were genetically related to other white people and not to Asians. Penrose also established that the greatest risk factor for DS was maternal age, identifying thirty-five as the cutoff point at which risk escalated. Oliver Wendell Holmes wrote in a 1927 Supreme Court decision, “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.” The forced-sterilization law, applied to people with many disabilities and disadvantage but particularly focused on those with intellectual disabilities, was not repealed for almost fifty years. In 1958, a French geneticist, Jérôme Lejeune, presented to the International Congress of Genetics his evidence that the condition was the result of a triplication of the twenty-first chromosome, of which there should be only two copies; the scientific name for Down syndrome is trisomy 21.
The psychoanalyst Erik Erikson (inventor of the term identity crisis), at the urging of his friend Margaret Mead, had sent his newborn son Neil to an institution within days of his birth in 1944 and kept his existence secret even from his other children, fearful that if anyone knew he had produced an “idiot” his reputation would be damaged. He had been told that his son would live no more than two years; in fact, Neil lived two decades. The view that a child with a disability was an unmitigated tragedy reached an apotheosis in Simon Olshansky’s oft-quoted description of parents’ “chronic sorrow.” His was not the only such voice. The psychoanalysts Albert Solnit and Mary Stark lobbied in 1961 for a new DS mother to have “physical rest; an opportunity to review her thoughts and feelings about the wished-for child; a realistic interpretation and investment of the feared, unwanted child by doctors and nurses; and an active role in planning for and caring for the newborn child as she is able. These are the measures through which the mother can minimize or overcome the trauma of giving birth to a retarded child.”
In 1966, the playwright Arthur Miller and his wife, the photographer Inge Morath, institutionalized their child with DS and told almost no one of his existence. In 1968, the ethicist Joseph Fletcher wrote in the Atlantic Monthly 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.” Willowbrook, that hell house of the 1960s and early 1970s, happened for a reason; parents who had been persuaded that their retarded children were not persons left them in repugnant conditions.
Yet even as prejudice against those with intellectual disabilities was escalating, a new movement to help the disabled was also unfolding. The argument that the disabled warranted benevolent treatment coincided with a larger post-Enlightenment shift in our conception of early education. Historically, this had been the province of mothers, and the notion that experts had something to add began only with the founding of the first kindergartens in early-nineteenth-century Germany. At the end of the nineteenth century, Maria Montessori applied lessons she had learned from her work among the intellectually disadvantaged in Rome to typical children. Soon nursery schools began to crop up in Europe. In the United States, they burgeoned when the New Deal subsidized teaching jobs, then spread further as the Second World War effort called mothers into the workforce. At the same time, attempts to curtail childhood mortality were also under way, directed especially at the poor. The new science of behaviorism rose up in opposition to eugenics and suggested that people are made, not born, and can be educated and shaped into anything. The emerging field of psychoanalysis was concurrently examining how early trauma could interfere with healthy development, and some of its adherents began to question whether the shortcomings of the poor and disabled might be the result of early deprivation rather than organic inadequacy.
The 1935 Social Security Act included a provision that the federal government would match state funds for treating the disabled. Investigators soon began to look at how a stimulating and enriching environment allowed poor children to transcend their apparent deficits. John Bowlby, the father of attachment theory, demonstrated that good maternal care was crucial to the development of the healthy child, an insight so obvious today that it is hard to remember how radical it was a mere sixty years ago.
Eugenics was finally discredited when it devolved into the Holocaust. Meanwhile, the influx of handicapped veterans at the end of World War II softened social prejudice against disabled people in general. In 1946, the US Office of Education set up a Section for Exceptional Children, which led to better education programs for people with special needs, but those children remained segregated from the larger society. In 1949, Ann Greenberg, the mother of a child with Down syndrome, placed advertisements in the New York Post seeking other parents who shared her concerns. A year later, they founded the Association for Retarded Citizens, now known as the Arc, and still one of the most prominent organizations in the field. Most parents thought of DS entirely in terms of nature: the child has a genetic anomaly and nothing can be done about it. Greenberg was among the parent activists on the side of nurture: the child has a genetic anomaly and there is work to be done.
When John F. Kennedy became president, he established a commission to study mental retardation and its possible prevention. Reintegration of the disabled into the larger society was spearheaded in part by his sister, Eunice Kennedy Shriver, whose 1962 article in the Saturday Evening Post about their sister Rosemary emphasized that even families of prominence and intelligence can have retarded children. She observed with sadness the poor living conditions to which most people with mental retardation were consigned. Her vision of change took meaningful form in the wake of the civil rights movement’s rethinking of social inequalities. Black people had for so long been described as constitutionally inferior, and when they rose up against that characterization, they opened the door for other marginalized people to do the same. Head Start, founded in 1965, was dedicated to the idea that people lived in poverty not because inherent deficits qualified them for nothing better, but because they had not received appropriate and constructive early stimulus. Head Start combined health, education, and social services and trained parents as active partners in the treatment of their children.
By the end of the 1960s, insights from Head Start were being applied to people with intellectual disabilities, and in particular to children with Down syndrome. It became clear that people with DS showed a wide range of functioning, and that it was absurd to predict a newbo
rn’s abilities simply from his diagnosis. It seemed to follow that writing such people off at birth was unfair, and that their capacities should be maximized, both to give them a better life and to avoid later costs. Early intervention was better value for money than remediation. In 1973, Congress passed, over President Nixon’s veto, the Rehabilitation Act, which stated, “No otherwise qualified handicapped individual in the United States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” Even with the budget cuts of the Reagan years, programs for disabled children remained in force; this population had become entrenched and drew broad public sympathy. The cause reached a triumphal apogee with the passage of the Americans with Disabilities Act in 1990, which extended the 1973 protections beyond the confines of federally funded programs. Parents, with support from disabled people themselves, had capitalized on changing ideas about humanity. They had validated lives long considered worthless. If racial minorities and the poor deserved support and respect, then so did people with Down syndrome and related conditions. If help to these other groups was best given early, then so, too, was aid to people with intellectual disabilities.
Early intervention (EI) is now a federal program for infants with any of a broad range of complaints—low birth weight, cerebral palsy, Down syndrome, autism—and it has vastly raised levels of functioning in all these groups. EI services provided before a child turns three may include physical therapy, occupational therapy, nutrition counseling, audiology and vision services, nursing support, speech-language therapy, and instruction on assistive technology, as well as support and training for parents who are having trouble coping. It entails a strong focus on sensory stimulation of all kinds. Hospitals are required to tell parents about these services. EI is available to people at every socioeconomic level, sometimes through home visits and sometimes in special centers. These early services are also a form of parent training and may help families to feel optimistic about keeping their children at home. The quality of services for children with particular disabilities varies enormously from state to state; New York, for example, has especially good EI services for DS, and anecdotes tell of people moving to the state specifically to access them.
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