EI is the full expression of the nurture-over-nature argument—the ultimate triumph of psychoanalysis, civil rights, and empathy over eugenics, sterilization, and segregation. It grew out of a strange nexus of federal politics, parent activism, and psychology; it was a result of changing understandings of nondisabled children and new theories of general early education. It continues to evolve today, as many forms of engagement are grouped under that now-ubiquitous rubric.
Change in both treatment and acceptance of people with DS, however, continues to be driven by parents. By demanding that physicians treat their children’s physical ailments as respectfully as they would those of nondisabled children, they have brought about an astonishing increase in life expectancy for people so diagnosed. If early intervention is ultimately a vague and ever-evolving umbrella term for a broad range of protocols, it has nonetheless been the organizing phrase for a radical rethinking of the lives of disabled people. Where science and biological cure have been stalled, the social model of disability has achieved wild triumph. Many specific techniques are invaluable in addressing particular needs, but the long and short of it is that disabled children, like nondisabled children, thrive on attention, engagement, stimulation, and hope.
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When Elaine Gregoli’s daughter, Lynn, was born in 1970, a few years before Jason Kingsley, the obstetrician announced to the baby’s father, “Your daughter is a Mongoloid idiot.” Elaine, just twenty-three years old, already had a son, Joe, two and a half, and she decided not to have more children. She had never heard of EI. “Lynn was a baby a very long time,” Elaine said. “She didn’t sit up till she was twelve months old; she didn’t walk till she was almost two.” Elaine went to an agency, YAI, where a doctor gave her some little exercises to do with Lynn. When Elaine returned two years later, the agency asked her whether she’d like to work there part-time, because they had a severely handicapped little girl with seizures, and they wanted a nurse around. “So Lynn was in the first preschool program that Brooklyn ever had, for two hours, twice a week, and I was right there to learn what I could,” Elaine said. She became increasingly interested in the brand-new field of early intervention, and Lynn’s school asked her to run their program.
Like Jason Kingsley, Lynn was immensely nourished by the nascent EI movement. She competed in the Special Olympics as a gymnast and an ice-skater. Her motor skills were always better than her cognitive skills, so Elaine mainstreamed her in recreational programs, but not in educational ones. She was in a regular Girl Scout troop, and in a swimming program with typical kids. “But she always was with the younger kids,” Elaine said. “She was ten, and she was with six-year-olds. You keep her where she can succeed.”
Sometimes, Elaine recalled, she needed to be reminded that her son needed equal praise for his accomplishments. Lynn didn’t walk until she was almost two, but she was so small that she looked much younger. “Everybody would come to our house and go, ‘She’s walking!’” Elaine recalled. “My son came up to me one day and said, ‘Mom, look!’ He walked back and forth in front of me. He said, ‘I know how to walk, too.’ After that, I told people, ‘When you come into my house, you look at and you praise both my children.’”
Despite the attention Lynn’s condition demanded, Joe’s relationship to his sister was generally positive. Elaine remembers the story of a schoolmate who said to Joe that his sister was retarded. It was hurled as an insult, but Joe didn’t notice that; he just said, “Yes, she is,” and got into a conversation about what it meant. “I’d wanted Joe to know that word, so it wouldn’t be a shock to him,” Elaine said. “It really was an eye-opener, that he realized that. It was like saying she had brown hair and brown eyes.” Many years later, when Joe and his wife were expecting each of their sons, their obstetrician suggested that they go to a geneticist. Joe agreed, but said each time that he wanted to have the baby even if he had Down syndrome. “I was surprised at that,” Elaine said. “That was when I knew that Joe really didn’t feel she was a negative.”
As an adult, Lynn works in a cafeteria, earning minimum wage, and she lives in a community residence; when I met the Gregolis, she had been there about ten years. Lynn reads on a first-grade level; she can do basic math with a calculator. Elaine said that she often wonders how much higher Lynn’s functioning might be if she had had early intervention as it is now practiced. When I met Elaine, she and Lynn were fresh from a trip to Disney World with Joe and his wife and two young children. “Lynn was the aunt,” Elaine said. “She took them on every ride; she bought them shirts; she really did great. Her nephews just love her. They play with her; she plays with them; she really enjoys them. I would love for Lynn to be a teacher, or a doctor. And she’s a cafeteria worker. But for her, it’s perfect. She loves that paycheck, and she goes to the bank and cashes it and puts it in her checking account. Writes her own checks. That’s a big thing for her. So I’ve learned to love it, too.”
Until her retirement in 2008, Elaine Gregoli served as assistant director of YAI/National Institute for People with Disabilities—the same agency she visited when Lynn was two. At YAI, part of Elaine’s job was to tell other parents about EI. “All parents want to help their kids,” she said, “even if they’re distracted by poverty or drug addiction. Since early intervention is free, they go for it, and they mostly end up repeating things with their kids after the social worker leaves.” The organization offers psychological counseling and respite care for families of people with disabilities; it serves twenty thousand people a day. Elaine also counseled parents who had a prenatal diagnosis of DS. “They’re four months pregnant and have to make a decision within a week or two about whether to abort,” she said. “I’ll tell them all the good things and some difficulties. The parents may never accept what happened to them and yet accept their child. They’re two separate things, the parental loss, and the actual person they will almost always end up loving.”
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The two key movements in educating disabled children after they have graduated from EI are mainstreaming and inclusion. Unlike EI, these two approaches affect nondisabled children. In the 1970s and 1980s, parents advocated for mainstreaming, so that disabled students could be taught mostly in dedicated classrooms within ordinary public schools. The 1990s brought a shift to inclusion, which educates disabled children in the same classrooms as their nondisabled peers, often with a special assistant. The most recent major piece of legislation in this area is the Individuals with Disabilities Education Act of 1990 (IDEA), which requires that all children with disabilities receive a free, appropriate public education in the least restrictive possible environment. This integrating of disabled children into regular schools has changed the appearance of the American classroom. Children with intellectual disabilities are usually educated in some mix between special-ed and heterogeneous classrooms unless their disabilities are too extreme for that to be viable; they may go to special schools only after every attempt has been made at achieving the least restrictive environment.
There are two essential questions in the debate about these philosophies: what is better for the child with a diagnosis, and what is better for the typical children (those without such a diagnosis). Some parents complain that disabled children in the classroom are a distraction and slow down learning for the rest. Conversely, Michael Bérubé, codirector of the Disability Studies program at Penn State, whose son has DS, argues that inclusion’s benefits are “truly universal”—because being in a classroom with people with disabilities breaches the widespread distrust of and discomfort with people who are unwell and makes those who are able-bodied more humane. Children with DS who are included have good models for language development, learn behavioral norms, and tend to realize more of their potential than they would in an environment predicated on their limitations. Integrated education prepares people with DS for supervised employment, freeing them from the sheltered workshops of times past; it helps more of them to live relatively independently. Public schools
are often required to be inclusive; fights still occur to incorporate these policies in private schools.
The pitfall is that people with DS who are in inclusion programs are often cut off from their peers, and people without DS are willing to go only a certain distance in building relationships with people who have the condition. “If the school superintendent and the principal and the teachers all buy into it and educate themselves, I think inclusion works beautifully,” said Arden Moulton, one of the founders of the National Down Syndrome Society (NDSS). “But it also depends on the child. Some children shouldn’t be in inclusion programs, just like some kids shouldn’t be at Yale.” Betsy Goodwin, NDSS’s cofounder, said, “The purists end up with lonely kids. Teen years are hard enough. You can’t expect a normal teen to have his best friend have a disability. It just isn’t the way it works.”
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Betsy Goodwin was young and fit and didn’t expect complications when her daughter, Carson, was born with Down syndrome in 1978 in New York. At the time, patients in private practice were generally counseled to institutionalize, and patients in clinics were instructed to take the baby home. In Betsy’s view, this is because doctors who had personal relationships with their patients were ashamed of what they saw as their failure. Her obstetrician said, “Why don’t you have a healthy baby, and we’ll forget about this one?” Barton Goodwin had been open to the possibility of leaving Carson behind; he feared that he would lose Betsy to the world of disability. Betsy was also frightened, but more frightened of the alternative. She called her childhood friend Arden Moulton, a social worker, and said that the doctors wanted her to institutionalize her child. Arden said that was the last thing Betsy should do. However, the lack of resources for DS babies and their families quickly became clear. A few months later, Betsy, until then an interior decorator, decided to start an organization for parents in her situation and asked Arden to help her. “I was a professional,” Arden recalled, “and she had the perspective of a parent.” That is how, in 1979, the National Down Syndrome Society was established.
The first project of the NDSS was to organize a conference for scientists working on any aspect of trisomy 21, as there had never before been such a gathering and the work was diffuse. At that time, total research in the United States on DS was about $2 million annually; it is now approaching $12 million, which is still low for a condition that affects so many people. Betsy went to Washington to meet with the head of the NIH, who told her that with amniocentesis, there would soon not be anyone born with Down syndrome. “I don’t know whether he’d met anyone Catholic,” she said drily, twenty-five years later.
Betsy became pregnant again when Carson was two, and she considered amniocentesis. She wasn’t sure whether she’d have had an abortion if she’d known that Carson would be born with DS. “I wasn’t sure why I was doing it,” she said. “To terminate? I honestly can’t say. I wanted, at least, to know. But for some reason, he kept getting in the way of the needle, so we never obtained a good read. The amnio goes into twenty-two weeks, and a baby can survive at twenty-four, so it was becoming very unpleasant for me. I finally said to Barton, ‘You can divorce me tomorrow, but I’m not going to go on with this process. I’m going to have what I have.’” Betsy’s son was born typical, as was another son a few years later. “My three kids get along great,” Betsy said. “That was another warning of the obstetrician: it’s going to ruin your marriage, and any kids you have subsequently will suffer. I really think, almost to a one, the siblings of kids with Down’s grow up to be more sensitive and thoughtful—maybe even more fulfilled—than the rest of the population.”
The Goodwins loved New York City, but when Carson turned eleven, Betsy thought New York was not the place to foster independence in someone who couldn’t form adult judgments. “So I came up with Greenwich, Connecticut, which has a policeman on every corner. It struck me as a very safe town for a young woman like her to be walking around.” Carson has a warm personality and is socially comfortable. When her brothers were in high school, she loved to dance. “I used to see this arm come out of her bedroom, and she’d grab one of her brothers’ friends and make them dance with her,” Betsy said. “Some of them, to this day, as men, say, ‘I never would have known that step if it weren’t for Carson.’”
When I met Carson, she had recently lost her job at Whole Foods because she always seemed to put the tomatoes at the bottom of the bag. “She’s never been a tomato fan,” Betsy said. “I assure you that the doughnuts would be on top.” Carson has trouble understanding that other people think or feel differently—her mother’s preference for John Coltrane over Britney Spears, for example, baffles her. She knows that her Down syndrome makes her different, even though she doesn’t grasp exactly how. That is why, Betsy explained, her dancing gives her so much joy: “She loves anything that makes her an equal.”
In the last three decades, NDSS has grown up alongside the child who inspired it; since Carson was born, it has awarded millions of dollars in scientific grants and has also supported social scientists focused on better educational strategies for people with intellectual disabilities. Once a year, NDSS organizes a conference at which scientists present their work to parents. The society has set up an annual Buddy Walk, which takes place in two hundred locations around the United States. People with Down syndrome walk with a friend to raise money and awareness; Buddy Walk events now bring in about a half million dollars a year to the organization. They also build community for people with DS and their families.
The National Down Syndrome Society has had to steer its way through treacherous waters. Some parents are concerned that an organization that researches ways to cure or ameliorate the symptoms of DS is not providing the affirmation that people with the syndrome need. Antiabortion disability activists have long argued that selective termination devalues the lives of disabled people; some have tried to persuade the NDSS leadership to take a strong position against abortion. NDSS would like to see more people keeping children with DS, but not because they are forced to do so by law.
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Until Ronald Reagan signed the Baby Doe Amendment in 1984, which classed the neglect or withholding of treatment for disabled infants as child abuse, parents and physicians could essentially let such infants die if they wished. The Princeton ethicist Peter Singer has espoused the right of women to choose abortion through the end of pregnancy and to commit infanticide on newborns if they so choose. He has defended this position with the utilitarian argument that most women who eliminate an unwanted child will produce a wanted one, and that the loss of happiness of the child who is killed (whose life would have been unsatisfactory) is outweighed by the happiness of the healthy child who follows. Although Singer’s position is extreme, it reflects the pervasive devaluation of people with Down syndrome and the assumption that their lives are displeasing to others and to themselves. One mother described being asked by a psychiatrist how she got on with her son with Down syndrome; when she replied, “Terrific,” he said that there was no need to be defensive. Marca Bristo, who chairs the National Council on Disability, said, “Singer’s core vision amounts to a defense of genocide.”
By 2000, the resistance to prenatal screening from the disability rights camp had crystallized. Disability scholars Adrienne Asch and Erik Parens, in their seminal discussion of the problem, wrote, “Prenatal diagnosis reinforces the medical model that disability itself, not societal discrimination against people with disabilities, is the problem to be solved. Prenatal genetic testing followed by selective abortion is morally problematic and it is driven by misinformation.” A few years later, Asch wrote, “Researchers, professionals, and policymakers who uncritically endorse testing followed by abortion act from misinformation about disability, and express views that worsen the situation for all people who live with disabilities now and in the future.” Leon Kass, chairman of the President’s Council on Bioethics under George W. Bush, has argued that we “treat” prenatally diagnosed illnesse
s by “killing” rather than tending to those who would develop them.
Preventing births of any subclass of people devalues them. A society in which fetuses with Down syndrome are routinely aborted clearly believes that DS is a grave misfortune. This does not mean that anyone hates or wants to slaughter people with DS; indeed, many people who would choose to terminate a DS pregnancy would also go out of their way to be kind to a living person with the syndrome. But I know from personal experience how kind sympathy can be a noxious prejudice; I do not care to spend time with people who pity me for being gay, even if their sympathy reflects a generous heart and is offered with egregious politesse. Asch claims that women abort disabled fetuses because of the woeful lives that would come of their pregnancies; that such woe is the product of chauvinism; that such chauvinism could be resolved. Janice McLaughlin, at the University of Newcastle, wrote, “Mourning the choice the woman is compelled to make is not the same as saying she is wrong or an active participant in discrimination. Instead, it points to the ways in which she, too, is a victim.” But the acts of those women do not merely reflect the society; they create it. The more such pregnancies are terminated, the greater the chance that more will be terminated. Accommodations are contingent on population; only the ubiquity of disability keeps the disability rights conversation alive at all. A dwindling population means dwindling accommodation.
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