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174 9 Institutions, Part 3 Robert Perske and Gunnar Dybwad experienced the reality of the “state school and hospital” system in the 1940s, ’50s and ’60s. Dr. William Bronston carries the story into the 1970s, describing his struggle at the Willowbrook State School and Hospital on Staten Island, New York. William Bronston, MD “Wretchedness and suffering and insanity and inhumanity.” Willowbrook holds a special place in the history of disability rights, and Dr. Bronston, more than any other single person, was responsible for bringing the horrific conditions there to the public eye. A grand-nephew of Leon Trotsky, Bronston was a political activist as far back as medical school, when he wrote an open letter to President Kennedy protesting the administration’s cold war policies . From medical school he went to the Menninger Institute in Topeka, Kansas (where Rev. Perske had been institution chaplain). While there he tried to help its lowest-paid workers form a union. After being fired from the Menninger and branded a troublemaker, Bronston moved to New York City to volunteer at a poor people’s medical center run by the Black Panthers in Harlem. Needing to feed himself and his family, in 1970 Bronston took a paying job at the only medical facility willing to hire him: the Willowbrook State School and Hospital. Designed to hold 2,950 residents, within four years of its opening in 1951 the facility was “home” to 3,600 children and adults with severe and multiple disabilities . By the early 1960s that number had swelled to more than 6,000. Moreover, by the time Bronston arrived in 1970, a state budget freeze by the Rockefeller administration had cut staff to the bone. (The freeze, as Bronston puts it, was “to reallocate dollars to the construction of the imperial new state capitol complex” in Albany). In addition the institution was virtually cut off from the community institutions, part 3 175 around it, and there was little or no accountability by staff or administration. The result was that a resident at Willowbrook was statistically more likely to be assaulted , raped, or murdered than in any other neighborhood in New York City. In 1965, after a tour of the facility, Senator Robert F. Kennedy declared the wards of Willowbrook to be “less comfortable and cheerful than the cages in which we put animals in a zoo.”1 As Bronston put it, “This was a closed system. This was hell.” Willowbrook was a facility of about sixty buildings scattered over this enormous, pastoral, park-like terrain, similar to Topeka State Hospital . I’d already gotten the picture of what state hospitals were all about. They looked like something straight out of a nineteenth-century pastoral painting, but in fact they were places of towering misery and humiliation and violence. I was thrown into this building with two hundred of the most broken people I’ve ever seen. One nurse in the day, one nurse in the afternoon, no nurse at night. Two ward workers on each of four wards of fifty people each. Everybody was in these institutional gowns, because there was not enough support to dress them. The minute clothes would be provided from home, they would disappear. I had never seen anything like it. I just stood there and tears welled up in me. I’d never seen such squalor. The wards were all concrete, with no furniture, nothing to soften the sound. There was a day room in each ward that was a big terrazzo-floored place with these wooden chairs and benches that were too heavy to lift. There were also some fiberglass chairs but those would constantly fly, people would throw them around. It was absolutely like something out of Dante’s Inferno. These were wretched “shades” in every form of disrepair, misery, withdrawal. At first you don’t get the full magnitude of it. It takes you day after day to fathom this hell. No programming going on, the most token schooling happening, no support or continuity for the schooling. The minute the kid reaches beyond school age, they go deeper into the institution. No school, no future, no exit. They’ve got to die to get out. That first day I said to the staff, “How do I find out who these people are? Where are the off-service notes? Did my predecessor leave exit notes describing who each case was?” “Well, no.” I didn’t even know who the 176 chapter 9 hell the doctor was...


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