Willowbrook State School: An Institutional Failure
- Sam Shepherd
- Oct 21, 2024
- 4 min read
By Anne Sparks
It is no secret that institutions in the United States for the people with disabilities have not always been ethical places with satisfactory living conditions. There have been many cases of schools, hospitals, and other institutions for children and adults with disabilities that have taken advantage of the historical lack of advocacy these groups have suffered. One such institution was “Willowbrook State School” in Staten Island, New York. While the school opened with the intention to help young people with disabilities, it turned into a nightmarish, overcrowded site of unethical medical experimentation. Its failure to serve its residents was a testament to the dire need for institutional reform and increased disability advocacy.
Willowbrook opened its doors in 1947 as a school for children with intellectual disabilities. The school started operating with a max capacity of 4,000 residents, but by the 1950s, the school was consistently housing over 6,000 people [1]. As the most well-known institution in the state, there was a huge demand for a space in the school. Overcrowding and lack of staff was an issue that plagued the school for decades. Families who desperately needed help caring for their children were convinced Willowbrook was the appropriate place to send their child. The school accepted far more patients than they were equipped for, while also implementing budget cuts due to underfunding. These budget cuts further worsened the state of living for those admitted to the school. New York Senator Robert F. Kennedy paid an unannounced visit to the school in 1965 saying: “[it is] less comfortable and cheerful than the cages in which we put animals in a zoo.” He then condemned the school even further, remarking, “there are no civil liberties for those put in the cells of Willowbrook”[2].
In addition to the overall lack of space and staff, there was also a myriad of evidence for abuse and neglect of the children. The institution’s health and ethics violations were ignored by the government for decades and this led to an atmosphere of apathy and opportunity for taking advantage of positions of power as caregivers. Children were physically struck, left in carts with no stimulation or oversight, and some were given tranquilizers to keep them in a state of drugged lethargy [1, 3]. There were even reports of children being chained to beds, left in isolation in dark rooms, or sleeping on the floor due to lack of space [4]. As awful as these conditions were, however, there continued to be a demand for spots in the school. It was in this environment that Dr. Saul Krugman began his infamous testing that is now known as one of the most controversial studies of all time [2].
In 1954, Dr. Krugman visited Willowbrook as a consultant in infectious diseases with New York University to address the prevalence of Hepatitis at the school. Krugman realized the disease was passing through contact between students, and not from anything like a contaminated food or water supply. He also noticed students that recovered from the sickness developed an immunity to Hepatitis infection later on. With this in mind, he started work on a vaccine. Once he had created a diluted form of the virus, he began to infect healthy children with it in order to give them a milder case of the sickness and immunize them [5]. This was clearly not an ethical way of testing his vaccine. While Krugman later defended himself by saying he had parental permission for all testing done on the students, that is only part of the story. Parents on the waitlist for the school were told their child could be moved ahead on the list if they agreed to partake in the testing. They were told that their child would likely contract the disease anyways if they were admitted, so they were making the best decision possible for the child. This study continued for years, and Krugman was initially praised for his breakthroughs on the disease, and he even became the President of the American Pediatric Society. He came under fire much later for the dubious methods and ethics employed in the testing, but the matter never became an official malpractice suit [2].
In the same year Krugman was named president of the A.P.S., 1972, the beginning of the end came for Willowbrook. Investigative reporter Geraldo Rivera was alerted to the abominable conditions in the school by one of the resident doctors. Rivera accessed the school grounds and filmed everything he could. He ran the story as an investigation into what he saw, showing viewers just how bad the conditions were. The story sparked public outrage. As the nation watched, policy makers realized they could no longer ignore the issue [2].
Rivera’s expose resulted in the NYCLU and the NY Legal Aid society filing a lawsuit against the school on behalf of the residents and families. The case reached a settlement in 1975, three years later, but the damage had been done. Willowbrook would never recover from the blow to its reputation, and in 1987 the school closed its doors forever [6]. Willowbrook School is a shocking testament to just how much abuse residents were subjected to while the rest of the nation stayed completely unaware. Their story reminds us to keep institutions accountable through frequent wellness checks and ethical practices. It is also a reminder that advocacy works, shining the light on injustice can be a catalyst for change that leaves an impact for decades [7].
Works Cited
[1] “About the Willowbrook Mile”. The City University of New York.
[2] Rosenbaum, Leah. “The Hideous Truths of Testing Vaccines on Humans.” Forbes, Forbes Magazine, 20 Feb. 2024, www.forbes.com/sites/leahrosenbaum/2020/06/12/willowbrook-scandal-hepatitis-experiments-hideous-truths-of-testing-vaccines-on-humans/.
[3] Addessi, Kristen S. "How the Willowbrook Consent Decree Has Influenced Contemporary Advocacy of Individuals with Disabilities." The City University of New York, (2017). https://academicworks.cuny.edu/si_etds/1/
[4] Kauffman, Lisle. “The development of inclusive education in the U.S. and effective current practices.” Vinnytsia Institute of Economics and Social Sciences.
[5] Robinson, Walter, and Brandon Unruh. “The Oxford Textbook of Clinical Research Ethics.” Google Books, Google, 2011, books.google.com/books?hl=en&lr=&id=7cIVDAAAQBAJ&oi=fnd&pg=PA80&dq=willowbrook%2Bstate%2Bschool%2Bhistory&ots=MbkW4Nw0_B&sig=d4iZ2ZdUmzJr07-bchFwsajcLEI#v=onepage&q=willowbrook%20state%20school%20history&f=false.
[6] “Willowbrook State School: How a Lawsuit Closed the Gates to a Notorious Institution and Opened the Doors of Opportunity for Thousands.” Historical Society of the New York Courts, 13 Oct. 2022, history.nycourts.gov/events/willowbrook-state-school/.
[7] “50 Years After a Landmark Lawsuit, How Does NY Treat People With Developmental Disabilities?”, NYCLU (2022). https://www.nyclu.org/commentary/50-years-after-landmark-lawsuit-how-does-ny-treat-people-developmental-disabilities
