In 1972, DR. Michael Wilkins risked everything to expose the truth behind Willowbrook State School, the largest mental institution in the USA. Meeting with investigative reporter, Geraldo Rivera, DR. Wilkins gave him a stolen key and told him to go with a camera crew and see what was going on behind the locked doors. What was revealed was an astounding display of pure inhumanity.
The hospital was originally built on Staten Island in 1942 and was used as a United States Army hospital named Halloran General Hospital. Proposals were made after World War II to have the building given to the Veterans Administration but instead it went to the New York State Department of Mental Hygiene. Willowbrook State School opened in October 1947, with the aim of being a safe place for those with mental disabilities. By 1955 it had already reached its full capacity of 4,000 patients and was soon housing up to 6,200 patients, a dangerously overcrowded cattle pen with no where near the amount of staff needed to provide the care required.
Parents would be encouraged by doctors to hand their children with additional needs over to Willowbrook State School and they would believe they were doing the best thing; sadly, it was far from it. There were lines and lines of beds, similar to a dystopian hospital. Adults and children were lying everywhere, on the beds, on the floor… some were even strapped to their bed to stop them moving around. There wasn’t enough staff to feed the patients, so many were seriously malnourished. Occupants were only allowed to use the bathroom twice a day, once in the morning and once at night-time and the toilets were often overflowing. As a result, the floors and beds were covered in human waste and disease ran rampant. Patients were only washed twice a month, and they were literally hosed down with cold water. One young boy was scalded with hot water, a punishment inflicted on him by the staff. Some residents were locked into their rooms, and some were left wearing helmets and straitjackets in an awful attempt to stop them hurting themselves or others. Any frustrated and/or scared patient who resorted to biting would have their teeth removed. Many underwent lobotomies. In 1960 measles broke out and 60 of the patients died. It appeared that No one cared. In 1965, Senator Robert F. Kennedy was given a tour of Willowbrook and found patients ‘living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.’ He said the facility ‘borders on a snake pit.’ Suggestions were given on how to improve the state school, but nothing was followed through.
‘There was one attendant for perhaps 50 severely and profoundly retarded children. Lying on the floor naked and smeared with their own faeces they were making a pitiful sound, a kind of mournful wail that it’s impossible for me to forget. 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.’ - Geraldo Rivera, from Willowbrook: The Last Great Disgrace.
And it got worse.
Medical researcher Saul Krugman, from the New York University, and Robert McCollum, from Yale University, discovered that 90% of the children admitted to Willowbrook would develop hepatitis. At the time it wasn’t known how the disease spread or how it could be prevented. Krugman decided to conduct studies, deliberately infecting 60 children, via faeces; he literally fed children shit. An unnamed witness later said:
‘Krugman watched as their skin and eyes turned yellow and their livers got bigger. He watched them vomit and refuse to eat.’
Krugman justified his ‘research’ by saying that most of the children would have ended up with hepatitis anyway.
Local newspapers, such as the Staten Island Register and the Staten Island Advance, started printing articles about the terrible conditions within the Willowbrook walls. In 1971 Jane Kurtin and Eric Aerts wanted to report on Willowbrook and social workers, Elizabeth Lee, and Ira Fisher, took Kurtin inside.
DR. Michael Wilkins, a physician at the institute, wanted to expose the truth of Willowbrook. He approached Geraldo Rivera, an investigative reporter for WABC-TV in New York. Using a stolen key, Rivera and his camera crew entered and what they found was beyond heart breaking.
The documentary got the desired attention and, rightful outrage from the general public. Rivera even won a Peabody award. On the 17th of March 1972, a class action lawsuit was filed against the State of New York by around 5,000 parents of Willowbrook patients. Elizabeth Lee was fired in 1972 as a result of her activism and support of the parents. In 1975, a consent judgment was signed, and it committed New York state to improve community placement for the, now designated, "Willowbrook Class."
Later on, some of the patients were interviewed and gave heart rending accounts of their experiences in this hellhole; these are two that stood out to me:
Bernard Carabello
Bernard is one of Willowbrook’s most famous patients. Born on the 19th of January 1950 he was diagnosed as being developmentally disabled at 3 years old and his mother was persuaded by doctors to place him in an institution – Willowbrook. He spent the following 18 years of his life in the squalid state school.
During an interview, Bernard recalled his earliest memory at Willowbrook:
‘My mom and aunt brought me there. I remember the nurses wearing a white unform and the big white cap like they used to do.’
When asked about the conditions he told how the education there went no further than 5th grade (a 10-year-olds education), before describing the staff:
‘There was one staff member who hated me, well there was a lot, but this one particular one used to beat me almost every single day.’
‘On the weekends, there were no clothes. People would be sitting there naked, maybe sneakers on, or underwear. It was hard on the weekends. I hid my clothes under the mattress to wear again. It was a survival technique.’
Bernard was not developmentally disabled but, in fact, had cerebral palsy. Rivera later spoke about Bernard:
‘Bernard was a classic example. He was a guy with cerebral palsy and other disabilities, but he (did not have) a low IQ. In other words, his IQ was normal, within the normal range. He was just misdiagnosed,’ Rivera said. ‘In those days, they put everybody in the institution.’
Bernard continues to share his story, in his words, ‘to make sure history doesn’t repeat itself.’
In 2017 Bernard was presented with the Felix A. Fishman Award for his dedication to fighting for the rights of those with disabilities. In 2020 he received an honorary Doctor of Humane Letters degree from the City University of New York College of Staten Island.
Betty
Johanna Elatter (Street Sheet) interviewed Bettina, better known as Betty, a former patient at Willowbrook. Johanna talks about her diagnosis of dissociative identity disorder and makes Betty aware of this. Betty replies ‘my aunt told me that you have a problem with ghosts in your head. Are they gonna put you in hospital? …I think I saw people like you when I was in Willowbrook. They were always being punished because they said they were different people.’
Betty was born in the 1950s and when she was 18 months old it was apparent to her parents that she had developmental delays. Her mother abandoned her, and her father passed her around various family members until Betty’s paternal grandfather placed her in Willowbrook. No one ever came to visit her.
Betty suffered beatings and sexual abuse at the hands of the staff, and some of the older patients. As she got older, Betty was labelled as a troublemaker and, at times, was punished by being placed in an isolation cell, or ‘The Pit’ as it was nicknamed. Patients would be left, segregated for 24 hours, wearing nothing but a cloth nappy, and access to minimal food and water. In a terrible case of eugenics. Betty and many others were forcibly sterilized, being told ‘retards can’t have babies’.
Betty managed to leave Willowbrook when she was 20 years old and was placed into a group home which, sadly, wasn’t much better than the Hell hole she had managed to escape. She ran away and ended up living on the streets. Betty suffered badly on the streets; she was raped and even prostituted by a man she believed was her boyfriend. After being arrested for prostitution, Betty was rescued by a social worker and placed with an aunt. Unfortunately, the aunt treated her as little more than a skivvy but ‘It was better than the street and Willowbrook!’ Betty said.
Willowbrook was renamed the Staten Island Developmental Centre in 1974. In 1983 it was announced that the building would be closing. By March 1986 there were only 250 patients and the last left on 17th September 1987, leaving the institute devoid of life.
And that is the story of Willowbrook State School, a legacy of neglect and abuse but also of change. The exposure of the awful conditions finally brought attention to the mistreatment of those with developmental disabilities and generated advocates for better treatment and care. I would highly recommend watching the documentary on YouTube which can be found here but please be warned, it is rather upsetting. As always, thanks for reading, please let me know what you think in the comments, take care of yourselves and I will see you next time.
Related articles: The Silenced Kennedy
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