The Willowbrook Wars

Bringing the Mentally Disabled into the Community

David J. Rothman

• Publisher: Routledge
• Year: 2017
• eBook ISBN: 9781351472562
• Topic: Medicine
• Subtopic: Psychiatry & Mental Health

The Willowbrook Wars is a dramatic and illuminating account of the effort to close down a scandal-ridden institution and return its 5,400 handicapped residents to communities in New York. The wars began in 1972 with Geraldo Rivera's televised raid on the Willowbrook State School. They continued for three years in a federal courtroom, with civil libertarian lawyers persuading a conservative and conscience-stricken judge to expand the rights of the disabled, and they culminated in a 1975 consent decree, with the state of New York pledging to accomplish the unprecedented assignment in six years.

From 1975 to 1982, David and Sheila Rothman observed this remarkable chapter in American reform of mental disabilities care. Would the state live up to its agreement without "dumping" residents into other nightmarish institutions? Would the lawyers prove as interested in meeting client needs as in securing client rights? Could a tradition-bound bureaucracy create a new network of community services? And finally, would a governor and a legislature tolerate such outside intervention, and if so, for how long? In answering these questions,

The Willowbrook Wars takes us behind the scenes to clarify the role of the judiciary, the fate of the underprivileged, and the potential for social justice. In their new afterword, the authors bring the story up to date, describing the results of the closing of the institution in 1987 from the experiences of integrating the former residents into communities to the legal battles between the state of New York and advocates for the mentally handicapped.

PART I MAKING THE CASE

1 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 provided the clients with medical care, his friend had provided them with legal advice. The purpose of the meeting, however, was not to reminisce. 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 filth 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 emergency services, he had little time left to give the specialized treatment that such handicapped people required. The only encouraging development was that over the past several months, he and a fellow physician, William Bronston, had been able to raise the level of political protest.

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 Department of Mental Hygiene. But aside from winning over a handful of social workers, like Elizabeth Lee, their efforts brought them only professional 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 expressions 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 Geraldo 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 details. Sensing a story, Rivera asked him to call 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,” responded Wilkins, “there are sixty retarded kids, with only one attendant 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.

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 rolling, 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 floodlight pierced the darkened space, he exclaimed, “My God, they’re children.” 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 Brooklyn 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 inform them about an incident and Paula, profoundly retarded, was unable to explain what had happened.

Paula was bom 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 Columbia Presbyterian Neurological Institute and its physicians recommended 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 difficult delivery; Vicki had been in labor for almost a day when her physician 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 private 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 except to diaper and feed them.” The director at a second nursery, which had no opening, told them to wait a few months. “Children are always dying. A bed will become available soon.”

Meanwhile, the Schnepses learned about a new infant therapy unit at the Willowbrook State School. A staff member explained that were Lara to become a resident, she would receive six hours of physical and occupational therapy daily. “They had hopes for our Lara and once again we did too,” Vicki Schneps explained. Still, placing her there was the “saddest day of my life.”

Frances Jensen kept her profoundly retarded son, Martin, at home until he was five. By then, he had become so hyperactive and destructive that the “doctor begged me to place him. He said that I would have a breakdown if I didn’t.” She visited several upstate institutions, found them “horrible,” and finally selected Willowbrook because at least “I could visit regularly and keep an eye on him.”

All of these parents’ initial encounters with the institution were positive. Grateful that their burdens had been lifted, they sought and found confirmation that the choice was right. Frances Jensen thought “the grounds are beautiful. . . like a college campus. The hospital roof reminded me of a cathedral in a small town.... It was like being in the country.” After Lara had been at Willowbrook a short time, Murray Schneps wrote the director that he had “fulfilled all we had hoped for in the way of care, kindness, and consideration for our darling child.” The Silverses were no less pleased. Within a few months at the school, Paula had learned to walk, which she had not been able to do at home.

Soon enough, however, they were disillusioned. Walking turned out to be the only thing that Paula learned at Willowbrook, and the ordeal of her parents* Sunday visits began. They would pack a bag of freshly laundered clothes, include soap and a towel, and set out for Willowbrook. Once there, they would sit around for an hour in a barren waiting room until Paula arrived. They were never allowed to see her ward. (Frances Jensen visited twice weekly, and pressed the staff to let her go on the ward. Later she admitted, “I was sorry I went. I didn’t sleep for nights afterward. . . . Inside, everything was different. You could cut the smell with a knife.”) When Paula finally came, they took her to a nearby washroom, scrubbed her from head to toe, and dressed her in clean clothing. In the washroom they learned about life on the wards. Her bruises told them all they needed to know about supervision and care.

One hot summer day, Paula arrived wearing a turtleneck. The Silverses frantically undressed her and found large bite marks covering her entire body. Raymond Silvers spent the next four days trying to discover what had happened. Getting no satisfaction from the doctor in charge of the ward or from the staff, he made an appointment with Jack Hammond, Willowbrook’s director. As he paced outside the office, a supervisor happened to come by and asked what was wrong. He told her about the marks and she explained matter-of-factly that one of the other residents, Maggie, had been biting all the children on Paula’s ward.

Silvers returned to Paula’s building and confronted the doctor, who confirmed the story but offered no solution. Neither ashamed nor contrite, he turned on Silvers. Did he want him to sedate Maggie for days on end so that she would not bite the other children? How would Silvers feel if Maggie were his child? Silvers had no ready answer, although later he wondered why sedating Maggie was the only solution. Wasn’t Willowbrook supposed to be a school? Couldn’t they teach Maggie not to bite? And still later he realized that he had been lucky. The doctor might have told him that if he was dissatisfied he should take Paula home. Then what would he have done?

When Paula turned twelve, she left the children’s unit and entered Building 76. Whatever misgivings the Silverses once had about her care now paled to insignificance. In 76, the waiting room itself stank of urine and they could only imagine the stench on the ward; Paula arrived bruised so often that they stopped asking questions. Now that she was older, the Silverses would take her to lunch at a Brooklyn restaurant. It was difficult to manage her, but at least they were doing something together as a family. Yet even this little amenity caused pain. No sooner was lunch over than Paula, sensing it was time to return, would begin to sob. As they drove back over the Verrazano Bridge to Staten Island, the sobs turned to moans and grew louder and louder. The Silverses, their eyes brimming with tears, would return Paula to the attendant and make their way home. What else were they to do? There was no money for a private facility, and they could not care for her themselves. It was Willowbrook or nothing.

Although the most disabled residents suffered the greatest neglect, even the less handicapped did not escape unharmed. Kenneth Becker was one of Willowbrook’s first residents. His parents requested that he be transferred there from Letchworth, a state institution in Westchester County, so that they could visit more often. Kenneth was not as retarded as Lara or Paula, but he was blind and, like them, the frequent victim of abuse. At one visit, his parents learned that he had been struck by another resident and suffered a concussion; although the incident had occurred five days earlier, he was still wearing bloodstained clothing. Two weeks later, they discovered that the stitches for his head wound had not been removed. The Beckers sometimes found Kenneth hungry, and he was verbal enough to explain that his ward had not been served dinner the night before, or breakfast that morning.

The Beckers brought Kenneth home as frequently as possible (but not so frequently as to lose him his place at Willowbrook). They also tipped the ward staff on each visit. The Beckers thought the tipping was useless, but almost all the regulars did it; perhaps the dollars slipped to an attendant would bring their child a little better care.

In 1974, under different circumstances, another parent, Mr. Ben Rosepka, related his son’s experiences at Willowbrook.

Q. Mr. Rosepka, can you briefly describe for the court how your son’s physical condition has appeared to you over the past fifteen years?

A. Very bad. Very bad. Stevie was slashed. He had bruises on his back. He was struck like with a knife.

Q. When you visit him now, does he have any marks?

A. Yes. Stevie lost an eye four years ago. When I came to visit him on a Sunday, they brought him out from his ward. I saw Stevie with a swollen face with one eye closed. He was blue around his eye. I asked the supervisor, “What happened to Stevie?” She said, “Well, he must have had a fight with some kids and they hit him in his eye.” I asked, “Was Stevie seen by a doctor?” She said, “Well, that is part of his sickness, that is why he keeps his eye closed.” I let it go for a week later. I wrote a letter to Dr. Hammond about it. Dr. Hammond replied that Stevie was going to be seen by a doctor. Two weeks later I received a letter that Stevie has been taken to Building 2. That is the hospital. When I came back the following Sunday, I see Stevie’s eye is no good in the hospital. I talked to Dr. Greenwood. He said, “Well, it’s too late. We operated on his eye. I am sorry to tell you Stevie lost his eye.”

Q. Did the doctor tell you anything else?

A. He did not tell me nothing else. I went back to the building. I asked for the supervisor and she said, “Well, it is one of the things that happens here at Willowbrook.”

Occasionally, a parent would complain to the press. In May 1955, shortly after the institution opened, the parents of a five-year-old resident publicly charged the staff with brutality, claiming that during a recent visit they had discovered bruises and welts covering her body. Willowbrook’s then director, Dr. Harold Berman, flatly denied the charge; the girl had only a single one-inch sore. Besides, he countered, it was the first time the parents had ever visited, despite the fact that the girl had been on the critical list twice. No one ought to believe their accusations of abuse since they were guilty of neglect.

The particular miseries that each parent experienced did not generate group protest. The hell that each of them inhabited was a private hell, isolating one from the other, perhaps because of shame (at having a retarded child), or guilt (at having institutionalized the child). Left to themselves, they did little except curse their fate—”Why did God do this to me?”—or wait for the phone call announcing that the child had died of whatever it was, and spare us the details or the cause.

Willowbrook did have an official parent organization, the Benevolent Society, but its functions amounted to little more than occasional social events. It sponsored a few parties, complete with circus clowns, and arranged outings to a nearby park. It also sponsored an annual luncheon, where the director or a prominent official from the Department of Mental Hygiene would speak. Proceeds from the luncheon would go to paying for a few more parties and outings.

All the while, Benevolent remained steadfastly apolitical. Although it had one thousand dues-paying members, only twenty or thirty regulars came to its monthly meetings at the institution. Or more accurately, it was altogether political, the way a company union is. Willowbrook’s director dominated the organization. Some parents gave him the deference due a doctor in charge of a critical case; others worried that to cross him might result in their child’s getting a heavy dose of “ward therapy,” a transfer to the worst units. Still others hoped that if they stood by the director, he might stand by their child. It was one of those fictions that parents who could do little else lived by.

What fictions did those responsible for Willowbrook live by? How could a Department of Mental Hygiene headed by prestigious psychiatrists, and a governor, for most of these years Nelson Rockefeller, ready to spend billions for university and office construction, allow such conditions to persist? How did Willowbrook get that way and how could it have been permitted to remain that way?

Some people are bom under unlucky stars and maybe some institutions are too. From its inception in the 1930s down through the 1960s, Willowbrook was a subject of controversy and a scene of misery. It was almost stillborn. The New York legislature authorized its construction as a school for the retarded in 1938, but by the time the buildings were ready the country was at war and the federal government, in need of hospital beds, took it over as Halloran General Hospital. After the war, the Veterans Administration assumed control and New York officials had to go through long and acrimonious negotiations to recapture it. From 1947 to 1951, as veterans slowly...

Table of contents

• Cover Page
• Half title
• Title Page
• Copyright Page
• Dedication
• Contents
• Going into the Field
• Part I Making The Case
• Part II The Biography of a Consent Decree
• Part III All Together Now
• Part IV Coming Apart
• Leaving the Field
• Afterword to the Aldine Transaction Edition: A Look Back on the Field
• Acknowledgements
• Sources and Methods
• Notes
• Index