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Willowbrook and the Lessons We Must Never Forget

Throughout history and in the not-so-recent past, many people with developmental disabilities were considered ill and needing constant medical care. For some New York families with disabled loved ones in the second half of the last century, doctors advised that Willowbrook State School in Staten Island was the answer.

Willowbrook State School has a place in disability history for many reasons, few of which are positive. While original intentions for Willowbrook may have been good, years later, the truth was revealed. As late as the mid 20th Century, institutionalization of people with disabilities was commonplace. Families placed their loved ones with these providers believing they were making the best choice given their circumstances.

Institutionalization of people with disabilities has been a highly debated issue for many years. Just the thought brings up ideas that are painful and dehumanizes people with disabilities. The negative ideas that evolved from this way of thinking have been difficult to overcome as a community and the effects are still felt within some portions of the disabled population today. When I think about people with disabilities living locked away from the rest of the world, hidden from society, it seems like something that happened before I was born. The truth is, it was still happening in my lifetime, and even more hurtful to me personally, right in my backyard.

Significant government budget cuts over the years had resulted in the employee to resident ratio at Willowbrook growing to unsustainable levels in the 1960s. Employee interaction with residents at Willowbrook wasn’t being monitored, resulting in the victimization of residents with no one protecting their interests. Residents were supposed to be getting an education and assistance with daily needs but that was not happening. Families had little idea their loved ones were living in a place of isolation, filth, disease, and neglect. Residents who couldn’t feed themselves weren’t getting the food they needed because they were left to figure it out on their own. They weren’t afforded the opportunity to experience different parts of life like special occasions with family, much less the possibility of finding love or getting married.

In addition to lack of funding, a few factors contributed to the atrocities that happened at Willowbrook. They were ignorance, lack of accurate medical information on how specific disabilities affect people, and public misconceptions. This was a recipe for disaster for the residents of Willowbrook. Senator Robert Kennedy of New York was one of the first prominent figures who started to call for change in 1965. He even referred to the conditions of the facility as a “snake pit.” A few years later, a relatively unknown Geraldo Rivera gained secret access into the institution in the early 1970s. It was then that the reality of the living conditions came to light.

When Willowbrook's doors were finally closed in 1987, many positive initiatives as far as the living situations of people with disabilities had begun to take shape. The investigation led to interest in and awareness of people with disabilities and their treatment in different settings. People began exploring alternative living arrangements in communities and measures to regulate these establishments. The belief that being at home in a community setting with family and friends would give people with developmental disabilities a better life experience in general was taking shape.

Parents and family members not only learned how to better advocate for their children but the former residents who were able to come out of that setting and be employable individuals learned how to advocate for themselves. The fact that they had endured such deplorable conditions and were subsequently able to come out of that setting and live as productive individuals among non-disabled people in their community also gave them the opportunity to experience a high level of self-esteem due to their accomplishments. Once she was released, Patti, who had lived at Willowbrook, was able to have a boyfriend and experience being in a relationship with another person.

After Willowbrook was exposed, disability advocacy and self-advocacy among persons with disabilities grew. When the institution closed in 1987, the focus shifted to community-based settings like group homes that are monitored by state agencies. Today, we are also seeing planned, independent living communities for persons with developmental disabilities such as Noah’s Landing in Lakeland and The Arc Village in Jacksonville. Educational programs, activities, and greater community inclusion are mandated by regulators for residents on the Medicaid waiver in all types of living situations. The benefits of living within the community are apparent in areas such as overall health and well-being.

Transitioning people with disabilities away from traditional institutional settings can also help taxpayers. Disability Scoop recently reported that a “. . . Department of Health and Human Services report found that for people with physical disabilities, monthly costs to Medicare and Medicaid in the first year after transitioning into the community decreased by an average of 23 percent. For those with intellectual disabilities, average monthly costs dropped even more, by 30 percent.”

Although thinking about what Willowbrook residents experienced is difficult, it’s important not to forget what happened to them. This ensures history doesn’t repeat itself. Now, more than ever, it’s extremely important to protect the ground we’ve covered in areas like housing, education, and employment of people with disabilities. The integration of people with disabilities into the community of their choosing is the best solution, not only for the individual with the disability, but also society in general.

Much of the historical information recounted here is from the documentary Unforgotten: Twenty-five Years After Willowbrook, which features Rivera.

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