Autistic History: Willowbrook State School (MASSIVE TRIGGER WARNING)


Willowbrook was a  New York state funded asylum that front itself as a school for the developmentally disabled that was established in the 1930's. It was a complex of buildings that housed adults and children who were developmentally disabled. It was located in Staten Island, a borough of New York City. In this institution, the most vulnerable people were starved, abused and neglected. 

People were moved into Willowbrook starting in 1947. With the way the school was built, it had a maximum capacity of 4,000 people. In 1965, they had more than 6,000 people living there. 

Prison had more room for inmates than Willowbrook had for its "students." Each person was only allotted 35 square feet. Prisons allow each inmate to have 80 square feet. 

Several outbreaks of hepatitis were reported shortly after Willowbrook opened and it continued for about 10 years. Instead of getting proper medical treatment, the residents of Willowbrook were subjected to medical experiments. Adults and children were injected with the virus that causes the disease for a medical study. Some were actually forced to eat feces from other residents that were infected with the disease. 

Staff

Staff members were not required to be subjected to a background check or fingerprinted as a condition of employment. It was later discovered that many staff members were physically, sexually and emotionally abusive to to residents. 

There were 50 residents assigned to one staff member. The residents vastly outnumbered the staff. 

Finally Being Investigated

A reporter in the 1960's was the first to start to investigate the horrific practices at Willowbrook. This print reporter went by the name of Jane Jurtin. She was the first. She got a job under a fake name there and witnessed what really happened. They allowed visitors during certain times but everyone was on their best behavior. This was the only way to get any real information on what was going on in there and what their secrets were. Her stories did not get the traction it deserved. She is a hero. 

Stories archived here: https://archivesspace.library.csi.cuny.edu/repositories/2/resources/90

Geraldo Rivera, who worked for ABC News, created an expose called Willowbrook: The Last Disgrace. This was in the national spotlight and told the true story on how Willowbrook treated its residents. Before it aired, the news network broadcasted a warning: "Tonight as a public service, we're going to make you sick."

Rivera stated,"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."

Rivera's expose did gain national attention but it did gain local attention from residents, local politicians who were painfully aware what was happening. They either did not care or though they deserved it. 




The Parents

Parents were unaware of what was happening to their children. They were told to lock them away, and that was the best for them. There was no other option. Parents filed a class action law suite in 1972 in the United States District Court for the Easter District of New York. The lawsuit stated that Willowbrook violated constitutional rights of the residents. 

There were multiple violations that were cited in the suite. 

They were:
  • confining residents for indefinite periods of time
  • failure to provide habitation
  • lack of education programs for speech, OT, and PT
  • failure to discharge eligible residents
  • inadequate clothing, meals and faciliteis
  • incompetent staff
  • failing to conduct periodic evaluations of residents to assess progress and refine goals and programming
  • failing to provide habilitation for residents
  • overcrowding
  • lack of privacy
  • failure to provide protections from theft of personal property, assault or injury
  • confining residents to beds or chairs or solitude
  • lack of compensation for work performed
  • inadequate medical facilites 
The lawsuit demanded immediate improvement of conditions:
  • medical care
  • clothing
  • hiring additional staff
  • banning inhumane treatment (including restraint and seclusion)
  • improving education
  • many others
The parents stated that their children rights under the Due Process Clause of the 14th Amendment was violated, right to education and a violation of the equal protection clause of the 14th Amendment. 

In 1993, a judge approved a settlement in which New York agreed that Willowbrook class members were to recieve high quality services for the rest of thier lives. 

Willowbrook Consent Decree

In 1975, Judge Orin Judd signed The Willowbrook Consent Decree, which forced New York State to improve conditions at the school and lower the overcrowding from 4,000 people to no more than 250 people by 1980. The decree also stated that Willowbrook was required to spend $2 million to create 200 places for Willowbrook transferees in hostels, hotels, halfway houses, group homes and sheltered workshops. 

This decree did not immediately close down this institution. It recognized that disabled people had a right to be protected against harm and cared for in a humane, non institutional setting. 

Willowbrook Review Panel

The Willowbrook Review Panel was formed in 1975. It was made up of 7 people whose job was to oversee the implementation of the Willowbrook Consent Decree. One of the wins that came from this horror show was the Americans with Disabilities Act. 

Willowbrook Shuts down

Willowbrook officially shuts down in 1987. In 1974, it was renamed the Staten Island Development Center. At this point, they had less than 300 people, which was mandated by the decree. 

Willowbrook shut its doors for the last time in September, 1987. 

34 Years Later, a Politician Says It was a Mistake to Close Willowbrook

Thats right. Eric Adams, a Mayoral candidate of New York City, said during an interview on Morning Joe on MSNBC that closing the Willowbrook State School was a "mistake" and an "overreaction."
"A few employees harmed those who were patients at Willowbrook on Staten Island. There was a reaction from the advocates to close down Willowbrook, deinstitutionalized those who need around the clock services, but we didn't balance that with real programs to give them."

I know I speak for everyone when I say, Mr Adams, how dare you? According to the New York Times, there were 97 reported allegations of physical abuse, 23 allegations of mental abuse and hundreds other reports of neglect and other mistreatment by group home workers against Willowbrook alumni. 

I Personally Know A Willowbrook Alumni

Shortly after I got married, I started working for ARC in the town my husband and I met. This was before I knew I was autistic. I was assigned to a group home with 13 resident. One resident I worked with often was an alumni of Willowbrook. She was about 10 years older than me. 

The organization I worked for was Upstate New York, an 6 hour drive from Staten Island. She was located far away from home. She had no know family so she was by herself. She had nightmares, was afraid to talk, injured herself constantly, was in a wheel chair due to the neglect and her mind was completely institutionalized. She was shown an enormous amount of support but her spirit was far too broken. Out of all the people I worked with, she is the one who impacted me the most. 

I tried to take her out in the community more often than the others because she needed it. She loved going to the mall, to the park and loved the movies. The group home I worked in had an amazing sensory room which she loved. 

When people say that Willowbrook should not have been shut down, I challenge them to talk to or spend time with a person who suffered at the hands of that nightmare. 

Parents Wanted to Send Me There

So after I saw the child psychologist in 1988 and I received my several different diagnosis, my parents got into an argument during dinner. We lived on Long Island, which is not far from Staten Island. My parents  were mad that Willowbrook shut down. "If we only took her to the clinic earlier, we could send her there."  At the time, I thought nothing of it. I was 6 so I had no idea what it was. 

Years later when I started working for ARC and had to watch the documentary as part of training, which was good because they serve a lot of the alumni, a light bulb went off in my head and I remembered that argument from when I was 6. I just put it to the back of my mind and buried the memory. 

Years later, I got into autistic advocacy after my diagnosis. Then through therapy, the memory was unhurried. I get that a lot of the parents had no idea but this was AFTER everything was public knowledge. They really hated me. 

Sources:
https://www.silive.com/news/2017/01/the_horrors_of_willowbrook_sta.html
https://www.nytimes.com/2020/02/21/nyregion/willowbrook-state-school-staten-island.html
https://disabilityjustice.org/the-closing-of-willowbrook/

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