Content notes: forced institution of disabled folks, multiple uses of the R slur, neglect, abuse (including sexual), death

This week, I learned that Martin Luther King, Jr., dealt with depression beginning in childhood. This ties directly into one of my daily threads this week:

As an aside, I have a meeting on Tuesday with Rep. Chávez to talk through how and why this was harmful. Instead of dunking on a queer formerly undocumented immigrant serving as an Arizona state representative, I offered to talk. So, please don’t use this tweet to throw hate his way – especially if you’re white.

Most people do not know the history of institutionalization, why it was so bad, or how hard the disability community had to fight to get it to end – and even now, institutions still exist. They believe that mental illness is something that you can see, something that is clear and can lead someone to violence.

The reality is, though, that people with mental health issues account for maybe 3-5% of violence:

only 3%–5% of violent acts can be attributed to individuals living with a serious mental illness. In fact, people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.

I go on in that thread to talk about how the media fails us with shitty representation of mental illness, physical disability, and more. They make us out to be monsters, fueling the fire for ableism.

 

Willowbrook

One of the best ways to illustrate how institutions do not ever need to come back is by talking about Willowbrook State School in Staten Island. As we do, though, note that this situation is far from unique to that specific institution – other former institutions have even acknowledged that.

From Wikipedia:

Willowbrook State School was a state-supported institution for children with intellectual disabilities located in the Willowbrook neighborhood on Staten Island in New York City from 1947 until 1987.

The school was designed for 4,000, but by 1965 it had a population of 6,000. At the time, it was the biggest state-run institution for people with mental disabilities in the United States. Conditions and questionable medical practices and experiments prompted Senator Robert F. Kennedy to call it a “snake pit”

BTW, RFK’s sister Rosemary was in an institution most of her life due to their father having had a lobotomy performed on her against the wishes of basically everyone in the family.

The institution gained national infamy in 1972, when Geraldo Rivera did an exposé on the conditions there. Public outcry led to its closure in 1987, and to federal civil rights legislation protecting people with disabilities.

Major trigger warnings for this video. There are naked people sitting in excrement, being neglected with clear signs of abuse.

A 25-year follow-up was also made, which is how I heard about these details following watching a paranormal investigation of another similar institution and doing some digging.

Same trigger warnings as above apply in addition to more detailed conversation of abuse.

“Unforgotten” is a critically acclaimed, award-winning documentary that examines the impact of the horrors of Willowbrook on the survivors and their families, 25 years after Geraldo Rivera’s historic television exposé.

It was a nightmare that shocked not only New York, but all of America. The public outcry about the Willowbrook State School for people with developmental disabilities resulted from Geraldo Rivera’s exposé on WABC after he had entered Willowbrook with a film crew in 1972, using a stolen key.

Those who survived the horrors at Willowbrook, like Judy, have taken to telling their stories:

I first learned about Willowbrook after watching a Ghost Adventures episode about Pennhurst Asylum. Like Willowbrook, it was a house of horrors requiring a documentary to open the eyes of the ableds.

Other locations like these exist, with some of them only closing in the mid-90s. It really hit home for me how I could’ve easily wound up in an asylum as a child – not as hyperbole, but as fact.

That’s terrifying in a way I cannot express.

Timeline and Details

From Vaccinated by Paul A. Offit (page 26):

The Willowbrook State School was founding in 1938, when the New York state legislature purchased 375 acres of land on Staten Island and authorized the building of a facility for the care of mentally [R slur] children. Construction was completed in 1942. The residents of Willowbrook were the most severely [R slur], the most handicappted, and the most helpless of those being cared for in the New York state system. Although Willowbrook was designed to house three thousand people, by the mid-1950s about five thousand lived there. jack Hammond, the director of Willowbrook, describd the hellish, medieval living conditions: “When the patients are up and in the day rooms, they are crowded together, soiling, attacking each other, abusing themselves and destroying their clothing. At night, in many of the dormitories, the beds must be placed together in order to provide sufficient space for all patients. Therefore, except for one narrow aisle, it is virtually necessary to climb over beds in order to reach the children.”

A small, poorly trained staff coupled with massive overcrowding led to a series of tragedies at Willowbrook. In 1965, inadequate supervision by a teenaged attendant caused a forty-two-year-old resident to be scalded to death in a shower. A few months later, a ten-year-old boy suffered the same fate in the same shower. That same year, a twleve-year-old boy died of suffocation when a restraining device loosened and twisted around his neck. The following month, one of the residents struck another in the throat and killed him. At the end of the year Senator Robert Kennedy paid a surprise visit to Willowbrook. Horrified by what he saw, Kennedy called Willowbrook “a new snakepit” and said that the facilities were “less comfortable and cheerful than the cases in which we put animals in the zoo.” Kennedy’s visit prompted short-lived, inadequate reforms.

Profiles in Medical Courage: Michael Wilkins and the Willowbrook School:

After trying to organize the parents to advocate change, Wilkins was fired by the School’s administrator, Dr. Jack Hammond.

Now unemployed, and not having completed his residency, Wilkins fought back. He contacted his friend, a local WABC-TV New York newsman, Geraldo Rivera. Fortunately, when Wilkins was fired, Willowbrook had not asked for his key and he used it to let Rivera come to Willowbrook and document the conditions. The State of New York attempted to prevent the release of the resultant film citing patients’ privacy, but Rivera, an attorney by education, persuaded his producer to make the film public. The exposé, entitled “Willowbrook: The Last Disgrace”, garnered national attention and won a Peabody Award for Rivera. Rivera and Wilkins later appeared on the nationally televised Dick Cavett Show with the film.

From 12 Facts About Willowbrook, the Nightmare Institution Behind the Cropsey Legend:

Budget cuts led to a loss of 600 staff members, leaving a ratio of one caregiver to 50 residents.

…

Former resident Bernard Carabello described getting beaten with sticks and belt buckles. He recalled being kicked into a wall by staff members and he went on to say sexual abuse was rampant at the hands of staff and other residents.

Residents were rarely taught much of anything despite Willowbrook’s claims of being a school. No behavioral modification exercises, social skills, or hygiene and grooming skills of any kind were taught to anyone.

On the rare occasion that showers were given, they’d be given in groups and residents would only be given five minutes to clean themselves with no soap, no toothpaste, and no individual towels. Many residents needed help eating, but the lack of staff led to a cut in mealtimes. What should have been 30 minutes of relaxing while enjoying a meal turned into a three-minute ingestion of gruel. There was no comfort, no structure, no hope for any of the residents at Willowbrook.

Willowbrook Inspired an Urban Legend About a Deranged Child-Killer

Ask those living on Staten Island where the legend of Cropsey began and they’ll tell you it’s always been around. Cropsey is the escaped mental patient that lurks in the tunnels beneath the old Willowbrook State School and comes out to hunt children at night. He’s the axe-wielding lunatic, the killer with a hook for a hand, he’s the boogeyman. He’s been a campfire tale meant to keep kids out of the abandoned buildings and surrounding woods. Parents would warn their kids to behave and to not wander off or old Cropsey will snatch them up with his hook and slice them to bits. But the creepiest thing about the legend of Cropsey is that it turned out to not be a legend at all…

The Legendary Boogeyman Cropsey Was a Real Killer Who Lived at the Abandoned Asylum

To the horror of locals, Cropsey was a very real threat to the children of Staten Island. While he wasn’t an escaped mental patient and his name wasn’t Cropsey, there really was a drifter that was once employed by the Willowbrook State School, who set up camp in the woods and roamed the tunnels beneath it after its closure in the 1970s. And worst of all, children really did begin to disappear.

A String of Kidnappings Haunted Staten Island

Children with mental disabilities began to vanish in Staten Island literally without a trace. The long-running series of disappearances began with five-year-old Alice Pereira in 1972. Then the faceless predator known only as Cropsey struck again, snatching seven-year-old Holly Ann Hughes in 1981. Next was 11-year-old Tiahease Jackson in 1983. Then 22-year old Hank Gafforio in 1984. The details of what became of these children and young adults remains unknown and none of their bodies were ever found.

From Vaccinated by Paul A. Offit (page 27):

In addition to abuse and neglect, the overcrowding, poor sanitation, and inadequate staff at Willowbrook led to the spread of many infectious diseases, including measles, influenza, and shigellosis, and those caused by intestinal parasites. But no infection was more damaging than hepatitis. In an effort to control outbreaks of hepatitis, the medical staff at Willowbrook consulted Saul Krugman, an infectious disease specialist at Bellevue Hospital in New York City. Krugman found that hepatitis developed in 90 percent of children admitted to Willowbrook soon after their arrival. Although it was known that hepatitis was caused by a virus, it wasn’t known how hepatitis spread, whether it could be prevented, or how many different types of viruses caused the disease.

Krugman used the children of Willowbrook to answer those questions. One of his studies involved feeding live hepatitis virus to sixty healthy children. Krugman watched as their skin and eyes turned yellow and their livers grew bigger. He watched them vomit and refuse to eat. All the children fed hepatitis became ill, some severely. Krugman reasoned that it was justifiable to inoculate [R slur] children as Willowbrook with hepatitis virus because most of them would get hepatitis anyway. But by purposefully giving the children hepatitis, Krugman increased that chance to 100 percent.

“They were the most unethical medical experiements ever performed in children in the United States,” said Hilleman. Art Caplan, director of the Center for Bioethics at the University of Pennsylvania, agrees. “The Willowbrook studies were a turning point in how we thought about medical experiments in [R slur] children,” said Caplan. “Children inoculated with hepatitis virus had no chance to benefit from the procedure – only the chance to be harmed.”

From The horrors of Willowbrook State School:

During the College of Staten Island’s 21st annual Willowbrook memorial lecture in 2014, Diane Buglioli, a former Willowbrook employee of 11 years, said that individuals were “denied their basic right to humanity” while living at the school.

Buglioli said that prisons allot 80 square feet per inmate; Willowbrook provided only 35 square feet per resident, “with no place to put a treasured item, no place to put their [personal] possessions.”

…

“There were people who did very good things, and people who did horrible things,” said Buglioli about the staff.

Staff members were not required to submit a background check for employment and it was later revealed that many staff members physically, sexually and emotionally abused residents.

…

Diane Buglioli’s first day of work at Willowbrook was in 1969. She was given a heavy steel key — that she still has to this day — that was used to unlock door after door; heavy steel doors that continued down hallways. When Buglioli got to the last door, she was worried what she might find on the other side.

“I found behind it 40 toddlers,” she said. “Some smiling, some asking me my name. Others were silent, just looking at me. Some walked toward me, some were lying in wooden carts and some were sitting on the floor. Some were drooling, some were crying. … It was surreal and just wrong. But they all share one undeniable truth: They were all little children.”

“To this day, I still feel the twinge in my stomach thinking to myself, ‘Why are these kids locked behind these doors?'”

…

The Staten Island Advance began uncovering the questionable practices of the Willowbrook State School in the mid-1960s. Reporter Jane Kurtin was one of the first to cover the abhorrent conditions at the school, though the stories did not gain the attention she’d hoped for.

It wasn’t until ABC News’ Geraldo Rivera’s expose, titled Willowbrook: The Last Disgrace, that the national spotlight was turned on to Staten Island and the school’s treatment of its “students.” Before the expose aired, the network warned: “Tonight as a public service, we’re going to make you sick.”

“This is what it looked like, this is what it sounded like. But how can I tell you about the way it smelled? It smelled of filth, it smelled of disease, and it smelled of death.”

…

Parents of residents living at Willowbrook filed a class-action lawsuit in Unites States District Court for the Eastern District of New York in March 1972.

The lawsuit alleged that the Willowbrook State School violated the constitutional rights of the residents who were living there.

Multiple violations were cited in the lawsuit, such as confining residents for indefinite periods of time; failure to provide habilitation; lack of education programs for speech, occupational and physical therapy; failure to release eligible residents; inadequate clothing, meals and facilities; confining residents to beds and chairs; inadequate medical facilities; incompetent staff, and dozens of other horrendous violations.

The lawsuit asked for the immediate improvement of conditions, such as suitable medical care; providing clothing; hiring additional staff; prohibiting certain “treatments,” such as the use of restraints and seclusion; and education, among other requests.

Parents allege their childrens’ rights under the Due Process Clause of the Fourteenth Amendment was violated, as was their right to education, a violation of the Equal Protection Clause of the Fourteenth Amendment.

Judge Orin Judd signed The Willowbrook Consent Decree in 1975, forcing New York state to improve conditions at the school and lower the overcrowding from 4,000 patients to no more than 250 patients by 1980. The consent decree stated that the state “would be required to spend $2 million to create 200 places for Willowbrook transferees in hostels, hotels, halfway houses, group homes and sheltered workshops.”

The Consent Decree did not immediately close Willowbrook State School, but rather recognized that people with developmental disabilities had a constitutional right to be protected against harm and cared for in a humane, non-institutional setting to prepare them to be contributing members of the community.

The Willowbrook Review Panel, formed in 1975, was comprised of seven people whose job it was to oversee the implementation of the Consent Decree.

Murray Schneps, a Staten Islander and successful civil litigator whose daughter Lara attended the Willowbrook State School, became vice chairman of the panel. Schneps, the “legal gladiator,” aimed to end the warehousing of individuals with intellectual and developmental disabilities and, instead, establish community residences for care.

From Willowbrook, the institution that shocked a nation into changing its laws:

The success of the class-action lawsuit brought in 1972 gave way to New York state’s 1975 consent decree, making the state find alternatives to Willowbrook for the mentally disabled to live. It was a daunting task. Barbara Blum, who led the Metropolitan Placement Unit, the agency in charge of finding new residences for the mentally disabled, was reviled in neighborhoods where she was bringing former Willowbrook patients. She was pelted with eggs, and in one instance, her nose was broken.

Again, from The horrors of Willowbrook State School:

The consent decree was one of many victories to come out the Willowbrook nightmare.

The Protection and Advocacy System as outlined in the Developmental Disabilities Assistance and Bill of Rights Act of 1975, the Education For All Handicapped Children Act of 1975 and the Civil Rights of Institutionalized Persons Act of 1980 helped create the foundation for additional federal legislation that eventually lead to the Americans With Disabilities Act (ADA) in 1990.

The groundbreaking Consent Judgment and closing of the Willowbrook State School was a historic accomplishment for individuals with intellectual and developmental disabilities.

The tragic events of Willowbrook State School and its subsequent closing set legal precedents that drove the deinstitutionalization movement across the country.

People with intellectual and developmental disabilities would no longer be institutionalized and treated like they were less than human. Agencies, services and even governments around the nation learned how to properly care for people; they were now placing individuals in community residences instead of institutions, expanding day programs, special education classes and growing state and city agencies.

From Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy:

Society filed class-action lawsuits over the conditions, leading to the landmark 1975 court settlement in which the state said it would protect Willowbrook’s residents from harm.

“It was better than a promise — it was an order,” said Chris Hansen, one of the early civil liberties lawyers on the case.

But moving the so-called Willowbrook class members dragged on for more than a decade, while conditions inside remained deplorable, recalled another of the lawyers, Robert M. Levy, who visited Willowbrook in the early 1980s and is now a U.S. magistrate judge.

“People would be naked on the wards,” he said. “They would have shoelaces tying their pants up instead of belts. In many ways, it was still like a concentration camp.”

Finally, in 1993, with the institution closed, a judge approved a settlement in which New York agreed that the Willowbrook class members were to receive high-quality services for the rest of their lives.

Again, from The horrors of Willowbrook State School:

While it’s been decades since the closure of the Willowbrook State School, the horrific treatment of people who lived there will always be in the minds of people with disabilities, family members, advocates, politicians, and residents on Staten Island and across the nation.

Today, those same people are still fighting for the rights of people living with disabilities and adequate funding for services, programs and residential options, worried that the lack of local and federal funding could force places like Willowbrook to open as the number of residential options continues to grow smaller.

Again, from Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy:

Exposure of these conditions led to a landmark 1975 federal court settlement in which New York agreed to move Willowbrook’s residents into small group homes. The state pledged that each individual had a “constitutional right to protection from harm.”

But that vow has been broken: Many of the institution’s 2,300 alumni who are alive today still suffer from mistreatment, a New York Times investigation found.

Last year alone, there were 97 reported allegations of physical abuse by group home workers against Willowbrook alumni, according to internal state data obtained by The Times.

There also were 34 allegations of psychological abuse and hundreds more of neglect and other mistreatment, like improper use of restraints or seclusion, medication errors and theft, the data shows.

Negligence may have contributed to the death of one disabled woman in Brooklyn and the loss of another woman’s finger in a Long Island group home, interviews showed. One man placed in a scalding bath or shower went to the hospital with second-degree burns.

…

“It was hard for my mom,” said Sandra Romero, the oldest child. Her mother later explained that a social worker had suggested sending the girls to Willowbrook, where things would be better, she said.

If you watch that 25-year follow-up I linked to above, that was the sentiment shared by many families. Some wanted to off-load their kids, sure, but most wanted to do what was best for them and had been convinced that this was it.

I can’t imagine the guilt.

Again, from Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy:

The Bronx district attorney, Darcel D. Clark, said her office investigated for more than a year at Union Avenue, but there was insufficient evidence to prosecute the allegations of abuse. Victims could not speak for themselves, she said, and her office could not obtain cooperation from witnesses. “It’s not whether or not it happened,” she said. “It’s what could we prove.”

The state office for people with disabilities declined to comment on specific cases but said any abuse was unacceptable. It said disciplinary action was taken against workers with substantiated allegations, and employees received retraining and enhanced supervision after the arbitration process. Nine of the employees still work for the agency, and seven of those continue to work in group homes, though none returned to Union Avenue, the state said.

…

The most effective action against the Union Avenue employees accused of abuse turned out to be a 2016 lawsuit filed on behalf of three residents — none of them Willowbrook class members.

The state, in settling the lawsuit this fall, agreed to pay $6 million to the three families and to transfer control of the facility to a nonprofit provider, the Institutes of Applied Human Dynamics, which took over in December.

Omayra Andino, the chief executive of Applied Human Dynamics, said her organization has brought on all new staff.

…

“It is 2019,” Ms. Ferguson wrote. “Nobody should be reliving their horrors of Willowbrook — whether it be class members or their family members.”

We like to think that these ideas are things of the past, but they’re not:

“Now we have small Willowbrooks,” said Ida Rios, 86, a retired teacher whose late son Anthony was at Willowbrook and who now runs an association for Bronx families with relatives in group homes. “As much as things have changed,” she said, “they don’t change.”

 

The Pandemic

One illustration of this has been -gestures vaguely at the last two years – the pandemic. The death of Michael Hickson is, sadly, a perfect example:

Michael Hickson, a 46-year old quadriplegic who’d contracted COVID-19, died at St. David’s South Austin Medical Center in Austin, Texas, on June 11 after the hospital ended treatment for him and moved him from the intensive care unit to hospice care.

Melissa Hickson says her husband was denied potentially lifesaving treatment because doctors at the hospital made a decision based on their biases that, because of his disabilities, Michael Hickson had a low quality of life.

Despite fighting to get the government to officially condemn these acts, they’re still happening. It doesn’t help when Walensky, the head of the CDC, spouts stuff like:

The overwhelming number of deaths, over 75 percent, occurred in people who had at least four comorbidities, so really these are people who are unwell to begin with, and yes, really encouraging news in the context of Omicron.

Disabled folks aren’t the only ones this kind of mindset hurts. We saw many Indigenous communities left to their own devices during the earlier days of the pandemic, despite the fact that the US government is supposed to assist. The reality is that our government routinely fails to do anything helpful, from COVID-19 response to not ensuring access to water to letting white murderers go free. In fact, the pandemic has hit BIPOC communities incredibly hard, from adults to children.

The only people the pandemic seems not to harm are those with immense power. We can’t pretend as though this isn’t by design anymore, especially with how many of us would be locked in asylums, taken as slaves, or otherwise horribly abused historically.

 

Additional Reading