see attachments, please use and reference links and reading materials
Please use quotes, stats, or other evidence from this week’s course materials to support your responses. Read: Johnson, Roland. (1994). Lost in a desert world, an autobiography. Chapter on Pennhurst. Available from: http://www.disabilitymuseum.org/dhm/lib/detail.html?id=1681&page=all#138, (Numbers 1-138) Watch: Willowbrook Expose: https://www.youtube.com/watch?v=xPvQpWEdxoY&list=PLVvgapxToLhgqKmv32AOxEWcJXKMR8l17 1. How does Johnson describe his experience at Penhurst? 2. How does Rivera describe Willowbrook? 3. What is the relationship between disability history and institutionalization? 4. What is deinstitutionalization? What did the process entail? ;2 oO~ IraflsaC+/{);1 Wit (.5 Welcome to Willowbrook Early in the afternoon of January 6, 1972, Michael Wilkins drove from Willowbrook to a nearby diner to keep an appointment with an old activist friend. They had worked together in the 1960s at a New York City clinic set up by the Young Lords, a Puerto Rican gang turned eleemosynary, to treat children who had contracted lead poisoning by eating paint chips from crumbling tenement walls. Wilkins had pro- vided the clients with medical care, his friend had provided them with legal advice. The purpose of the meeting, however, was not to remi- nisce. The day before, Wilkins had been fired from his position as staff doctor at Willowbrook and he was outraged. For almost a year now he had been providing a modicum of care for the very retarded children and adults confined to this massive state institution on Staten Island. The overcrowding was desperate-beds jammed one next to the other in the wards and along hallways-and the Blth ubiquitous, so that virulent intestinal diseases like shigella spread through the population. Staffing was minimal, one attendant to fifty or sixty inmates, and injuries common, with residents abusing themselves or assaulting others. Working under these conditions, Wilkins had not been able to raise the level of medical care. Forced to provide emer- gency services, he had little time left to give the specialized treatment that such handicapped people required. The only encouraging devel- opment was that over the past several months, he and a fellow physi- cian, William Bronston, had been able to raise the level of political protest. 15 16 MAKING THE CASE Soon after arriving at Willowbrook, Wilkins and Bronston had tried to persuade the director, Dr. Jack Hammond, and the medical staff to demand larger appropriations and more staff from the state's Depart- ment of Mental Hygiene. But aside from winning over a handful of social workers, like Elizabeth Lee, their efforts brought them only pro- fessional and social ostracism. They were no more successful in making a white collar-blue collar alliance and mobilizing support from the nurses and attendants. As a last resort, they turned to the parents of the Willowbrook residents, a group with a well-deserved reputation for being guilt-ridden and passive. Yet, to their astonishment, they inspired a cadre of supporters, mounted several protest marches, and attracted attention from the local Staten Island Advance. Then, just as they were planning a large rally to usher. in the new year, the administration panicked. It tried to ban their meeting with the parents, and failing, summarily fired Wilkins and Lee, who, unlike Bronston, were too new to Willowbrook to enjoy civil service tenure. The dismissal caught them off guard. They were at once insulted (no one likes being fired, even from Willowbrook), angry, and uncertain of what to do. Lee went to see one of the director's assistants in an attempt to get the dismissal reversed, but he would not hear her out. She and Wilkins then called a few parent supporters, which brought them ex- pressions of sympathy but little else. With Bronston out of town, the two of them mulled things over and Wilkins came up with an idea. His friend from the Young Lords clinic had since left the practice of law to become a fledgling news reporter for ABC television. Maybe Ceraldo Rivera would be interested in doing a story about a doctor and a social worker who were fired for organizing parents to protest inhumane conditions. Wilkins telephoned his friend Rivera and briefly recounted the de- tails. Sensing a story, Rivera asked him to can back at the studio the next day, and when Wilkins did, Rivera checked whether a film crew was available. Learning that all were booked, he asked Wilkins if the story could wait a couple of days; Wilkins thought so, adding that since he had the keys to several buildings, Rivera had to bring a crew to film the "conditions." "What conditions?" asked Rivera. "In my building," re- sponded Wilkins, ."there are sixty retarded kids, with only one attend- ant to take care of them. Most are naked and they lie in their own shit." The image of naked kids lying in their own shit got Rivera a film crew and they immediately drove to the diner on Staten Island to meet with Wilkins and Lee. WELCOME TO WILLOWBROOK 17 At the diner, Wilkins explained that Willowbrook was laid out like a college campus, some forty low-slung buildings spread over several hundred acres. They would enter through a main gate, where a guard was on duty, but they were not to stop-hardly anyone ever did. Once inside, they were to drive about half a mile to reach his building. Easily said and easily done. No one interfered or asked any questions. They pulled up on the grass right outside Building 6, and with cameras roll- ing, Wilkins unlocked first an outer door and then a heavy metal inner door. Rivera entered, and breathing in foul air, hearing wailing noises, and seeing distorted forms, momentarily lost his bearings. As a flood- light pierced the darkened space, he exclaimed, "My Cod, they're chil- dren." To which Wilkins responded, "Welcome to Willowbrook." They shot quickly. The hand-held camera rapidly panned the room; figures were framed in direct light, then lost in a shadowy blur. The images had a jumpy and elusive quality. This spindly and twisted limb was a leg; that grossly swollen organ was a head. The blotches smeared across the wall were feces; the white fabric covering the figure in the corner was a straitjacket. That crouching child, back to the camera, was naked and so was the one next to him. Both of them were on the floor; there was no furniture in the room save for a wooden bench and chair. The camera focused for a few seconds on an oddly smiling person, the only one fully clothed. That had to be the single attendant. Even as he stood there, Rivera thought of the Nazi concentration camps. One could see similar scenes in the newsreels of American soldiers freeing the inmates of Dachau: the bulging, vacant eyes in emaciated faces, the giant heads and wasted bodies. Was Willowbrook America's concentration camp? Did we have such horrors too? In less than ten minutes, the filming was over and the crew left, postponing interviews with the director and his staff. Rivera rushed to prepare the films for broadcast before anyone could protest the raid and block the story. Within a few hours his clips and text were ready. At six o'clock, Willowbrook went on the air. The scene that Raymond and Ethel Silvers saw on the screen that evening was a familiar one, but they had never described it to anyone, family or friends. Every Sunday morning they left their home in Brook- lyn to visit their daughter, Paula, at the facility, a visit that they dreaded but would not skip. They never knew in what condition they would find her. Sometimes they arrived to learn that she was sick; other times they saw welts or bites all over her body. No staff member ever called to 18 MAKING THE CASE inform them about an incident and Paula, profoundly retarded, was unable to explain what had happened. Paula was born severely brain-damaged. Although the attending physician said there was no chance she would develop normally, the Silverses spent the first year and a quarter of her life going from one hospital to another. At fifteen months, Paula was evaluated at the Co- lumbia Presbyterian Neurological Institute and its physicians recom- mended institutionalization; she was certain to become an emotional drain on her parents and exert a psychologically damaging influence on her siblings. The Silverses were in debt from the cost of consultations, and even Raymond's moonlighting to supplement his clerk's salary did not allow them to place her in a private facility. Hearing about the Willowbrook State School and reasoning that since it was close by they could visit her often, they decided to place Paula there. Vicki and Murray Schneps, after an even more elaborate search, also sent their child to Willowbrook. Lara, their firstborn, had been a diffi- cult delivery; Vicki had been in labor for almost a day when her physi- cian finally performed a cesarean section. A few hours later, Lara turned blue and received oxygen. "She was placed in the intensive care unit," Vicki Schneps recalled, "and I visited her there. 'She's fine, just fine,' said the doctor as they discharged us .... Four months passed. Lara was slow, but children don't do much at four months of age. Suddenly she began having strange jerking motions and fluttering of her eyelids. My pediatrician said,'You are a nervous mother. Just relax and forget it.' .. At her next checkup, Lara had a seizure in the pediatrician's office and he immediately sent her to Long Island Jewish Medical Center for neurological examination. "Lara's first hospitalization was followed by many more," Vicki Schneps continued. "From one expert to another. The outside world seemed to no longer exist. Murray's career came to a standstill .... I couldn't speak to anyone without breaking down in a flood of tears." The medical consensus was that Lara needed daily physical and occupational therapy. One physician recommended a pri- vate nursery in Westchester, but one visit convinced the Schnepses that "the place was -no better than a cemetery above ground. No one touched the babies