CW: Institutionalization, Racism, & Ableism
It wasn’t that long ago that disabled Americans were kept in overcrowded institutions like the Willowbrook State School, where conditions were so grave that Robert F. Kennedy once described them as “a situation that borders on a snake pit.” In 1972, the public had a firsthand look at just how egregiously the residents were treated. Geraldo Rivera’s investigation exposed Willowbrook to the world, bringing the horrific conditions to light.
The families of the residents brought a class-action lawsuit against the institution, claiming that its practices violated the rights of the children. Three years later, the Willowbrook Consent Decree was created, establishing new standards for what the facility had to do. Willowbrook was open until September 17, 1987, when the state officially closed the facility’s doors.
After that, once the horrific images became public, outrage sparked a wave of criticism. Because of that, the deinstitutionalization movement began. Over time, the movement grew beyond just closing institutions.
It became a fight for the right to live in the community with proper support. This fight eventually resulted in the 1999 Olmstead decision. The decision affirmed that disabled Americans have the right to receive services in the most integrated setting possible.
Disabled people who also belong to other marginalized groups, like Black and brown disabled people, LGBTQ+ disabled people, immigrants, and those in poverty, run into obstacles that affect their lives even more. For instance, a Black disabled patient seeking medical care might have their pain ignored because racism and ableism clash in the exam room. In a classroom, a disabled student who doesn’t speak English might not get the help they need due to assumptions about their family.
When it comes to housing, a disabled tenant in poverty could face eviction for asking for basic accommodations, leaving them to choose between having a home and being safe because landlords know they usually won’t be held responsible. These situations aren’t random events. They show how different systems determine which needs are important, which safety concerns can be overlooked, and whose lives are considered valuable.
Unfortunately, disabled Americans are also dealing with cuts to vital services. I am 26, living with cerebral palsy, and I rely on Personal Care Assistant services to live independently in my community. My routine relies on the stability of my PCAs.
In April, everything changed. MassHealth cut my nighttime PCA hours with no warning. One day I had support. The next day I didn’t. Two months of hard work followed. I had to keep explaining that overnight care isn’t optional. It was the difference between sleeping and staying awake worrying.
While I fought to get my hours back, I knew this wasn’t just impacting me. Federal officials started questioning long-standing disability rights interpretations. There were questions about receiving services in integrated settings. A Justice Department memo suggested narrowing those protections. Medicaid policy was shifting too, affecting people nationwide. Federal spending cuts were and are happening nationwide.
All of this was happening while I was trying to convince someone that my nighttime hours mattered. I knew my autonomy was in the hands of a health insurance employee. A system like that can make you feel small.
Willowbrook is not ancient history. My story and countless others show why remembering that history matters. Decades don’t measure the distance between the past and present. How systems treat you does. Some days the past feels far away. Other days, it feels too close.
Works Cited
Andrews, Kenya, et al. “Intersectionality and Testimonial Injustice in Medical Records.” Proceedings of the 5th Clinical Natural Language Processing Workshop, Association for Computational Linguistics, 2023, pp. 358–72. https://doi.org/10.18653/v1/2023.clinicalnlp-1.39.
Dorsey Holliman, Brooke, et al. “Disability Doesn’t Discriminate: Health Inequities at the Intersection of Race and Disability.” Frontiers in Rehabilitation Sciences, vol. 4, 2023, article 1075775. https://doi.org/10.3389/fresc.2023.1075775.
Liu, Elaine. “Willowbrook State School: Institutional Abuse, Medical Ethics and the Rise of Disability Rights in the United States.” Critical Debates in Humanities, Science and Global Justice, vol. 5, no. 2, 2025, pp. 85–102. https://criticaldebateshsgj.scholasticahq.com/article/141852-willowbrook-state-school-institutional-abuse-medical-ethics-and-the-rise-of-disability-rights-in-the-united-states.
Lynch, Sarah N. “States Aren’t Required to Provide Community-Based Care for People with Disabilities, New DOJ Opinion Claims.” CBS News, 18 June 2026. https://www.cbsnews.com/news/doj-disability-opinion-community-care/.
Martin, Ramon. “Disability Discrimination in Violation of the Fair Housing Act.” Legal Justice Matters, 21 May 2024. https://www.legaljusticematters.com/disability-discrimination-in-violation-of-the-fair-housing-act.
“Willowbrook State School Records.” College of Staten Island Library, City University of New York, https://www.library.csi.cuny.edu/archives/WillowbrookRG.html.