By Allison How

The College of Staten Island (CSI), housed on the former site of the Willowbrook State School, is marking 2022 as “The Year of Willowbrook,” a yearlong series of events to commemorate several significant anniversaries about the institution, which was closed in the 1980s after decades of atrocities.

Willowbrook was the world’s largest residential institution for children and adults with developmental disabilities when it opened in 1942. Anniversaries include the 75th anniversary of its opening, the 50th anniversary of journalist Geraldo Rivera’s televised exposé which received national attention and the 35th anniversary of Willowbrook’s closing.

The Willowbrook Mile

One aspect of the commemoration is the Willowbrook Mile Project, the installation of an interpretive walking trail on the former facility’s site, which is now the campus of CSI. The project is a collaboration among the Staten Island Developmental Disabilities Council, the Institute for Basic Research (IBR), the Office for People with Developmental Disabilities (OPWDD) and CSI. It is meant to preserve the site’s history and honor the deinstitutionalization movement. The groundbreaking is planned for September.

In addition to special events, extensive programming will support The Year of Willowbrook, including presentations by CSI faculty and professional staff on disability studies and authors’ panels on Willowbrook. Also, CSI has been gathering items for its Willowbrook archival history for the public, with materials that reflect the experiences of residents, staff and parents through correspondence, event posters, newsletters, flyers, photographs, newspaper clippings and oral histories.
NYS Built

In 1938, the New York state Legislature authorized the building of a school for what they then termed “mental defectives.” The Willowbrook site was selected and the buildings erected in the early 1940s. It was a tax-payer funded facility, according to the National Council on Disability (NCD). 
However, when the U.S. became involved in World War II, the military used the site as a hospital named Halloran Hospital and prisoner-of-war camp. As the hospital was closing down, the property returned to its original purpose as the Willowbrook State School. 

It finally opened in 1947, intended to serve as a model of treatment for people with intellectual and other disabilities.
When it opened, Willowbrook attempted to provide better care in an institutional setting than could be received at home by overwhelmed parents and the severe lack of community services offered in those days.
But, the huge 380-acre site made it difficult to provide personalized comfort and care, especially for a facility that housed well over 6000 people at its peak of enrollment, even though it was meant for no more than 4000.

Portrayed As Ideal

Regardless, Willowbrook was portrayed to the public as an ideal environment for this population, with publications running stories and photos that showed the patients engaged in meaningful activities with close supervision, according to CSI on their website. These misrepresentations helped to conceal all the institute’s problems from the general public.
A statement on the CSI website says, “When workers came to Willowbrook, they usually had no experience with or knowledge of disability. Inadequate numbers of staff, largely untrained, struggled with their responsibility for too many residents without resources. Then the budget cuts that occurred, especially in the 1960s, made these shortages even more critical.”
CSI went on to assert that employees who raised concerns were fired and advocates were ignored. “The state was well-aware of conditions but even under criticism refused to do anything about them until forced to by public outcry, media scrutiny and lawsuits in the 1970s.”

According to a 2019 article in Vintage News, “There was little funding, which resulted in low staffing and lack of essential items such as clothing and hygiene supplies. Showers were few and far between, with no soap or towels available. Physical and sexual abuse were rampant.”

Staffing Shortages

Severe staffing shortages meant that there was typically a ratio of 40 residents to one staff member, resulting in very limited attention and extremely rare occurrences of them ever being allowed outdoors. Ironically, the school barely offered educational or therapy services. In addition, for many years, a doctor at the school deliberately infected patients with hepatitis for his research studies.

In 1965, Sen. Robert Kennedy (D-N.Y.) paid an unannounced visit to Willowbrook, where he described the conditions to “a snake pit.”

“The children live in filth,” said Kennedy in a press conference. “Many of our fellow citizens are suffering tremendously because of lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who live in these institutions.”
Kennedy’s condemnation of Willowbrook produced public outcry and spurred New York state officials to develop an improvement plan. However, minor remedies were short-lived, and conditions soon went back to their original state. 
Geraldo Rivera Exposé

Tipped off by a concerned Willowbrook doctor, in 1972, reporter Geraldo Rivera snuck into one of the buildings unannounced with a cameraman using a stolen key.

He was shocked by what he saw and smelled. Many of the patients were half-dressed in filthy rags or completely naked in dilapidated rooms. Some wore straight jackets or were strapped to their beds. With mealtime limited to about three minutes and many unable to feed themselves, the vast majority were severely malnourished and emaciated.
Overcrowding led to as many as six children to a crib. Within six months of admission nearly all suffered from parasites, pneumonia and hepatitis. A vast number of them had wounds and medical ailments that were never treated.

“It smelled of filth, it smelled of disease and it smelled of death,” said Rivera in his initial report. “They [the residents] were making a pitiful sound, the kind of mournful wail that it’s impossible for me to forget.”
Shortly after his visit, Rivera aired a television special called “Willowbrook: The Last Disgrace,” bringing to light its dangerous and abusive living conditions. The public was outraged, and parents formed advocacy groups to take action in federal court.

A class action suit was filed in U.S. District Court for the Eastern District of New York in March 1972. It alleged 13 serious violations of constitutional rights.

The judge approved an injunctive order and a consent judgement in 1975. The judgment outlined specific mandates covering issues such as resident living, the environment, programming, evaluation, staff hiring, education, recreation, nutrition, medical care, therapies, use of restraints and specific, limited conditions for allowing research and experimental treatment.
The judge also declared that the institution and the New York Department of Mental Hygiene must “ready each resident…for life in the community at large” and called for the placement of Willowbrook residents in less restrictive settings, aiming to reduce the number of patients at Willowbrook to no more than 250 by 1981.

Cuomo Closes Facility

Although the parties ended up in court many more times in disputes over implementation of the decree, in 1987, Willowbrook officially shut down. In September 1987, Gov. Mario Cuomo (D-N.Y.) declared Willowbrook “officially and forever closed.”
The court ruling and public awareness led to overhauls in many state-run institutions throughout the country and sweeping legislation protecting people with disabilities, such as the Education For All Handicapped Children Act of 1975, the Civil Rights of Institutionalized Persons Act of 1980, the Americans with Disabilities Act (ADA) of 1990, as well as the Olmstead decision against unnecessary segregation.

“This landmark lawsuit became a symbol for raising the conscience of the nation to support community integration and to establish high standards for humane conditions for all residential opportunities,” OPWDD states on their website.
The Willowbrook scandal and its closure was the catalyst for a dramatic expansion and improved quality of community services, the availability of day programs and establishing the right of children with disabilities to a public education.

Bernard Carabello

While at Willowbrook, Rivera interviewed Bernard Carabello, a 21-year-old patient who had been there since he was a young child. He ended up being released from the institution soon after and worked as a patient advocate for the New York state Consumer Advisory Board for many years, according to Rivera. He was also a founder of the Self-Advocacy Association of New York State.

In their initial interview, Carabello said he received little education at Willowbrook and his hope was to learn to read. He went on to say that “The place is a disgrace. The conditions keep getting worse every time [they] cut the budget more and more.”
“Bernard was a classic example,” said Rivera in an interview with Metrofocus/PBS. “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.

“In those days, they put everybody in the institution. He’s had a long career [with the state]. But he is exactly what I’m talking about in terms of potential unrealized for that population. It was called a school, but there was no education or remediation or vocational training. There was none of that. [It was a] kennel for humanity disguised as a school.”
“It was hard to express myself at that time, because I was never encouraged that I was a bright human being or you’re intelligent,” said Carabello to Rivera 10 years later. “It was frustrating, because I got beat with sticks and keychains. They kicked my head through the wall. I thought I was going to die in the institution.”

“The shameful legacy of Willowbrook guided a generation of policymakers and advocates to the recognition that to really and truly be free from harm, individuals with disabilities must be provided with services in the least restrictive environment that meets their needs, in places that most look, feel and operate, well, like home,” said NCD on their website. “Perhaps the best way to learn from the past is to remember and celebrate just how far we’ve come from Willowbrook.”