Willowbrook was a state-supported institution for children and adults with intellectual disabilities in Staten Island which opened in 1947. It facilitated the abuse and mistreatment of the thousands of individuals with intellectual disabilities that passed through their doors. There was significant overcrowding, and the institution was severely understaffed. Though designed with a maximum capacity of 4,000 residents, Willowbrook housed over 6,200 residents in 1969. The ratio of attendant to residents was around 1:30-40 when it should have been 1:3-4 (Reimann). The mistreatment continued for decades until 1972 when a documentary entitled Willowbrook: The Last Great Disgrace exposed these atrocities and called for complete deinstitutionalization and closing of Willowbrook and other similar state-run institutions. Implementing deinstitutionalization is still an ongoing process, but it is crucial to the health and wellbeing of individuals with disabilities that they are relocated from large institutions to smaller community-based group homes.
Sex, Race and Socioeconomic Disparities at Willowbrook
In 2016, an intersectional analysis of the case files of 761 residents of Willowbrook examined many details of the admission process and the identities of the residents.
Exposing Willowbrook:
“I think particularly at Willowbrook that we have a situation that borders on a snake pit.” – Robert Kennedy
This was New York Senator Robert Kennedy’s impression of Willowbrook State School when he toured it in 1965. Then in 1972, Geraldo Rivera, an American journalist and talk show host released an exposé titled, “Willowbrook: The Last Great Disgrace” which can be watched below.
Rivera and his team showed up unannounced at Willowbrook and saw the deplorable living conditions firsthand. The glaring issue seemed to be the lack of funds which prevented the institution from being properly staffed. Therefore, the residents couldn’t be properly cared for and attended to, and the institution couldn’t be properly cleaned. Rivera then traveled to California which had closed down state-funded institutions 20 years prior and relocated individuals with intellectual disabilities to small-scale homes and programs. In these programs, residents were well dressed, properly fed, and had individualized behavior plans. This brought Rivera to the realization that there was a more fundamental issue with large state-run institutions, even beyond Willowbrook. In large institutions, the needs of each individual were often overlooked as it was easy to only see the uniting factor among them: their mental disability. Therefore, there was an overall lack of care for their well-being and quality of life. Rivera’s findings were echoed by Geoffrey D. Garin, a Harvard student in the early 1970s who published an article “For a Friend in the Snakepit ” in The Harvard Crimson. When working in Willowbrook, Garin was horrified by the degrading conditions the residents were forced to live in. He befriended Sally, a 21-year-old resident with down syndrome who changed the way Garin viewed people with disabilities. He writes of their friendship and their respective realities,
“The fact that she (has an intellectual disability) and I am “normal” explains nothing. We are both human in a moral and personal way, and that I should enjoy all the fruits and comforts of humanity and she none remains mystifying to me.” -Geoffrey D. Garin
Similar to Rivera, Garin realized that the residents didn’t live in humane conditions because, in a sense, they weren’t looked at as human.
Deinstitutionalization
This problem could only be solved by the complete deinstitutionalization and closing of Willowbrook and other similar state-run institutions. Establishing small-scale programs instead, similar to the ones in California, would result in people with developmental disabilities being treated as individuals with the right to live a quality life. The personalized care implemented, as a result, would do more for their growth and development than a large institution like Willowbrook ever could.
On May 10, 1970, the first group home for adults with developmental disabilities, the Fineson residence was opened in New York City. It is located on East 14th Street in Brooklyn and it is run by the AHRC, a non-profit organization dedicated to helping individuals with developmental disabilities live complete lives. This was the first implementation of deinstitutionalization in New York City, and it was a historic moment in the history of disability rights.
However, implementing deinstitutionalization has not been simple. While the documentary was released in 1972, Willowbrook was not officially closed until 1987, fifteen years later. Over the next ten years, nine other New York State Developmental Centers were also closed, but many remained open (Milestones in OMRDD’s History Related to Willowbrook). There have been many instances and reports of abuse, such as the death of Jonathan Carrey, in these large developmental centers throughout the years. Closures have occurred as recently as the O.D. Heck Developmental Center in 2015 and the Broome Developmental Center in 2016. A handful still remain open today including the Brooklyn and Bernard M. Fineson (Queens) Developmental Centers in New York City. While there were plans as early as 2013 to close the remaining institutions, there are not enough resources to relocate all the residents into adequate group homes. It is vital to the health and wellbeing of the community of individuals with disabilities to be provided with extensive resources and care. More attention and support must be given to this community within the realm of public health to rectify the injustices that they’ve experienced throughout history.
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