Please use quotes, stats, or other evidence from this week’s course materials to support your responses.
Read:
Johnson, Roland XXXXXXXXXXLost in a desert world, an autobiography. Chapter on Pennhurst. Available from:
http:
www.disabilitymuseum.org/dhm/li
detail.html?id=1681&page=all#138, (Numbers 1-138)
Watch: Willow
ook Expose: https:
www.youtube.com/watch?v=xPvQpWEdxoY&list=PLVvgapxToLhgqKmv32AOxEWcJXKMR8l17
1. How does Johnson describe his experience at Penhurst?
2. How does Rivera describe Willow
ook?
3. What is the relationship between disability history and institutionalization?
4. What is deinstitutionalization? What did the process entail?
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Welcome to Willow
ook
Early in the afternoon of January 6, 1972, Michael Wilkins drove
from Willow
ook to a nea
y 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 Willow
ook 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
een 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 a
iving at Willow
ook, 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
ought 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
Willow
ook residents, a group with a well-deserved reputation for
eing 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 Willow
ook to enjoy civil service tenure.
The dismissal caught them off guard. They were at once insulted (no
one likes being fired, even from Willow
ook), 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
ought 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
ecome 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
iefly 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
ing 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 Willow
ook 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
eathing 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 Willow
ook."
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 fa
ic 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 Willow
ook
America's concentration camp? Did we have such ho
ors 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
oadcast before anyone could protest the raid and
lock the story. Within a few hours his clips and text were ready. At six
o'clock, Willow
ook 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
ut would not skip. They never knew in what condition they would find
her. Sometimes they a
ived 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
ain-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
Willow
ook State School and reasoning that since it was close by they
could visit her often, they decided to place Paula there.
Vicki and Mu
ay Schneps, after an even more elaborate search, also
sent their child to Willow
ook. 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. Mu
ay's career came to
a standstill .... I couldn't speak to anyone without
eaking 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