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312 17 Institutions, Part 4 While physically disabled activists on the West Coast were organizing the first Center for Independent Living and those in the East were working to build Disabled in Action and the ACCD, the struggle to shut down the massive state institutions for those labeled mentally ill and mentally retarded continued all across the country. The “right-to-education” litigation filed by the parents’ movement in the early 1970s was followed by lawsuits designed to force states to provide community services to people released from the institutions, who had suffered the most horrific neglect and abuse. William Bronston, MD (continued) “There’s never been an official apology . . . about these crimes against humanity.” Among the most famous of the deinstitutionalization struggles was the one fought at Willowbrook State School on Staten Island in New York City. The key person in that fight was Dr. William Bronston, who had taken a position at Willowbrook because his reputation as “a troublemaker” precluded his being hired anywhere else. Ironically, this put him in precisely the place where his radicalism, energy, and finely honed skills as an “outside agitator” could be used to the most far-reaching effect. I ’d been inside Willowbrook now between a year and a year and a half, clear about the fact that I’m in there to bring the place down. And the way I’ve been doing that is by developing as much of a relationship as I could with the community-based parent organizations, especially the Down syndrome organization of Staten Island, whose chairman had a institutions, part 4 313 young boy, Bobby, with Down syndrome. He also had Hirschsprung’s disease, which is a condition where a baby is born without neurological enervation of the distal end of his colon and rectum, and so he can’t poop. What happens is that feces builds up and builds up and Bobby had to be evacuated by hand. The kid’s pediatrician just assumed that was part of the picture, didn’t know enough to know that Hirschsprung’s disease is a very common part of Down syndrome, which I knew instantly. So the kid was four or five years old when I met the family, and the mother had been pulling out this kid’s poop by hand once every week or so. The kid was ashen, terribly sickly, thin little spindly arms and legs and this just huge, distended belly and the hair not growing, Kwashiorkor-like.1 This family was just in hell. The family’s name was Marcario, and Mark Marcario was the dad. Mark became my salvation while I was in Willowbrook. He came to pick me up almost every day. We would have lunch together. Anyhow, what happened was that I urged he take Bobby to Columbia Presbyterian and they’ll fix him overnight, which they did. They walked into Columbia Medical School Hospital, and they put him through a real pediatric examination. They made the diagnosis instantly, and they operated instantly, and the kid became normal, overnight. And the parents couldn’t believe what had happened. The point I was making with the family was, once a professional sees your kid as “not human,” as not a valued kid, then they’re not going to be thinking about service or care the way they would if it was their own kid. This doctor would have known Hirschsprung’s in a minute if the kid didn’t have Down syndrome. But the fact that the kid had Down syndrome, it was missed by the doc. Then, he blamed the mother for not being a good enough mother, of not being willing to handle this terrible task of regular evacuation, when the mother knows that something is gravely wrong, and has to internalize the sense of sorrow and oppression of having to deal with this terrible problem. What came out of that was that through Mark, who ran a heating oil business and was a remarkable, civically oriented guy, I got introduced all over Staten Island to the Italian community, and to the parent community . I began connecting with and explaining to the community, through informal gatherings, the terrible toll that the existence of Willowbrook had on the evolution of community-based services, and talking to them 314 chapter 17 like from another planet on what community-based services were like, talking to them about Children’s Hospital in Los Angeles, about Child Development Clinic, and the fact that the...


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MARC Record
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