In lieu of an abstract, here is a brief excerpt of the content:

Chapter Three Deinstitutionalization and Independent Living THE TREND IN THE late 1950S and early 1960s toward deinstitutionalization allowed people with severe physical disabilities to begin entering the mainstream, bringing a new population to the developing disability rights movement. Nearly all people with serious physical impairments had trouble coping with a physical environment so ill-adapted to their needs, and many were spurred into activism by the discrimination and lack of understanding they encountered. Deinstitutionalization An early experiment in deinstitutionalization occurred at New York City's Goldwater Memorial Hospital, a long-term chronic care institution, where it was anticipated that people would remain their entire lives. Although hospital officials assumed that these individuals, most of whom had severe motor impairments, could not function in the mainstream, in 1958 a twentyone -year-old quadriplegic wheelchair user, Anne Emerman, was selected as a test case in independent living for this population. When she requested the opportunity to attend college after graduating from high school, she was told by a social worker that "this idea is a fantasy, and fantasy can lead to mental illness."! Emerman, however, not only graduated from college and earned a master's in social work at Columbia University , but she also became a psychiatric social worker at Bellevue Hospital. By 1990, Emerman was a wife, a mother, and director ofthe Mayor's Office for People with Disabilities in New York City. Others like Emerman, who wouldbecome significant players in the disability rights movement, would follow this first test case out of Goldwater to live independent lives. Among them was Marilyn Saviola, also a quadriplegic wheelchair user, who in her late teens organized a separate ward for young adults at Goldwater: [Previously] a young person might be next to a dying octogenarian. "This was where the people the world wanted to forget about were thrown," Ms. Saviola said. Then she and other young people took the social activism of the I960s to heart and pressed for their own ward. "We fought very hard to get that place," said Hermina Jackson, a quadriplegic who [also] later left Goldwater to become active in the disability rights movement. "1 don't think a 34 CHAPTER THREE lot of us knew how much potential we had until we moved over there."2 More like a college dormitory than a unit in a chronic care hospital, the young adults ward had brightly painted walls, "a recreation room with a stereo, a kitchen where residents pitched in to prepare dinners and [to arrange] expeditions to Broadway shows." Chosen for their compatibility with young people, hospital personnel in this new ward did not wear uniforms, and an elected council of residents advocated for the ward. Despite the many residents who used respirators or ventilators, the atmosphere of the unit was typical for coeds of the 1960s: "There was rock music, late night bull sessions and experiments with smoking and alcohol," as well as "romance." One of the young nurses in the unit, Deri Duryea, explained, "They were sent there to die, and suddenly they had life." Saviola began her emergence from institutional life in 1965 by being the first patient to attend college while still residing at Goldwater.3 Because New York State Vocational and Educational Services for Individuals with Disabilities (VESID) claimed that she was incapable ofworking, she was unsuccessful the first time she tried to get financial assistance for college. Yet Saviola was not discouraged. As she explains, I appealed to SenatorJavits, and he interceded on my behalf, referring to the federal Vocational Rehabilitation Act. As a result, VESID gave me a semester's tuition on a probationary basis. After I got a bachelor's from Long Island University and a master's in rehabilitation counseling from New York University, I figured out a way to live independently. I rented my own apartment in 1973. Medicaid paid for my 24-hour livein personal assistance services attendant, a van, and a driver, so that I was able to work as a rehabilitation counselor at Goldwater. But to keep Medicaid, I had to live at a subsistence level. Still required to live at a subsistence level, ten years later, in 1983, Saviola became executive director of the Center for Independence ofthe Disabledin NewYork (CIDNY), the first independent living center in New York State. Reflecting a new federal objective of including people with severe disabilities and expanding its coverage to include individuals who might not be able to secure employment , but who could live independently, the term "vocational...

Share