Remembering an Infamous New York Institution (2025)

Remembering an Infamous New York Institution

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Remembering an Infamous New York Institution (1)

Mentally ill patients sit on benches and on the floor in the women's ward at Willowbrook, Staten Island, N.Y., in January 1972. Bill Pierce/Time Life Pictures/Getty Images hide caption

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Bill Pierce/Time Life Pictures/Getty Images

By the mid 1960s, Willowbrook, a Staten Island institution for mentally ill or delayed children, was filled to more than double its capacity. But crowding was the least of the horrors: Some residents of the state-run institution were reportedly used as test cases for hepatitis studies.

Others were left to languish, abused and living in squalor with little medical or mental health care. It wasn't until a print reporter named Jane Kurtin and then an aggressive 29-year-old investigative TV reporter — Geraldo Rivera — went in with hidden cameras that the world woke up to these forgotten children.

Now Vanessa Leigh DeBello tracks her mother's 16-year stay at the school in a new memoir Moron: A Daughter's Story of an Accidental Childhood in Willowbrook. "Moron" was one of three scientific terms established in the early 1900s for people with developmental delays. The strongest term was "idiot," followed by "imbecile."

So-called morons were considered high-functioning, and it was this opinion that doomed the Staten Island girl. At 18 months, the elder DeBello wasn't walking or talking. Her parents took her to a specialist, and after psychological exams and an IQ test that pegged her at 53 points, the recommendation was institutionalization. When she was 3, DeBello's parents dropped her off at Willowbrook, where she lived until she was 19 years old.

DeBello says her mother was always very open about her formative years at the New York school. DeBello remembers asking simple questions like "Did you have toothbrushes?" She says her mom recalled that basic necessities like toiletries were chronically missing. DeBello says her mother's mouth is filled with cavities. "I remember looking ... and seeing all that silver. 'Wow, look at that. When am I getting that?' "

But as she got older, DeBello learned not to envy her mother's past. Willowbrook was plagued by poor hygienic conditions. Residents suffered from skin rashes, DeBello says. There was constant poking and prodding with needles and an endless series of injections. When Robert F. Kennedy visited the school in 1965, he called Willowbrook a "snake pit." From the conditions her mother described, DeBello says, he was probably reacting as much to the smell as he was criticizing vicious and uncaring management.

Perhaps the most striking form of abuse is this: Some of the residents were deliberately exposed to hepatitis. Experts estimate that close to 100 percent of residents would have tested positive for the disease. Some contracted hepatitis through unsanitary drinking water, others were injected directly. Still others, DeBello says, were fed hepatitis-contaminated feces.

How could this happen? "The mentality was to put [these children] where we can't see them," DeBello says. She describes the Willowbrook campus — now used by the College of Staten Island — as isolated, with thick trees and a sense of being hidden. "Out of sight," she says, "it was also out of consciousness." Many parents left their children there and never came back.

Rivera's gripping TV coverage of conditions at Willowbrook not only helped shutter the institution, but also changed the way people were treated at such places nationwide. Willowbrook has been closed for more than 20 years. But DeBello says the site itself could be a more vivid reminder of what happened. Visit the former campus, she says, and you may not even know what happened. "There needs to be more education so we don't see something like Willowbrook ever happen again."

The legacy of Willowbrook remained alive in DeBello's mother. DeBello says her mother was always dressed poorly, even years after her discharge when she was married and had children. DeBello says she never achieved a sense of self-worth. "Take the credit card," her husband would say. "Go, buy something!"

No matter what, it will always remain true that DeBello's mother spent 16 grueling years at Willowbrook. The cruelest irony? "My mother was not mentally retarded," DeBello says. "She was misdiagnosed. She was an insider and was completely aware of the circumstances and abuse and neglect."

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Remembering an Infamous New York Institution (2025)

FAQs

Are there any Willowbrook survivors still alive? ›

They became homeless on the streets of New York, and many actually came back to inhabit the abandoned buildings that were their homes for most of their lives. There are about 2,300 Willowbrook survivors alive today.

What happened to the children of Willowbrook? ›

An estimated 12,000 residents died at Willowbrook from 1950-1980, approximately 400 a year. Many who came to Willowbrook lived a short, brutal existence. They died because of neglect, violence, lack of nutrition, and medical mismanagement or experimentation. Some simply disappeared or even committed suicide.

Is Willowbrook based on a true story? ›

This is a tragic story based on a true place that had existed between 1947 and 1987. Having been raised in New York City, it took me back to when it was revealed in a major investigative news piece what was truly going on at Willowbrook State School.

Who exposed the Willowbrook scandal? ›

In 1972, ABC News investigative reporter Geraldo Rivera again drew national attention to Willowbrook with a television exposé that was watched by millions. Willowbrook: The Last Disgrace, exposed the institution's serious overcrowding, dehumanizing practices, dangerous conditions and regular abuse of residents.

What was the disease at Willowbrook State School? ›

Willowbrook Experiment. During the early 1950s, shortly after the opening of the Willowbrook State School, a hepatitis outbreak began to infect the enrolled students. Although the hepatitis infections spread naturally at first, controlled hepatitis studies were conducted on students beginning in 1956.

What happens in the Lost Girls of Willowbrook? ›

Based on a true story, it follows what happens to Sage Winters when she travels to Willowbrook to help find her twin sister, Rosemary, whom she believes had died of pneumonia six years earlier, but discovers was left at Willowbrook School by her mother and stepfather because her behavior was unmanageable.

Were the parents of the children in the Willowbrook study provided with consent documents? ›

Parents of children who participated early in the study gave consent after receiving infor mation provided by Willowbrook orally and in writ ing.

What happened to Bernard from Willowbrook? ›

After 37 years of working as the state-appointed advocate, Bernard recently retired. He remains active in the Commissioner's task force on Willowbrook, seeking to enforce the rights of fellow residents of the institution and all other individuals served by OPWDD.

Does Willowbrook still exist? ›

The remaining 171 acres of the Willowbrook property at the south end, is still under the administration of the New York State Department of Mental Health, which maintains a facility there called the Institute of Basic Research in Developmental Disabilities.

Why was Willowbrook shut down? ›

Kennedy to call it a "snake pit". The institution gained national infamy in 1972, when Geraldo Rivera did an exposé on the conditions there. Public outcry led to its closure in 1987, and to federal civil rights legislation protecting people with disabilities.

Which news person used a stolen key to expose Willowbrook in 1972? ›

Television journalist Geraldo Rivera (joined by print reporter Jane Kurtin) used a stolen key and an inside tip to go behind the walls of the Willowbrook State School for the developmentally disabled on Staten Island.

What happened to Rosemary, the lost girl of Willowbrook? ›

Six years after Rosemary's death from pneumonia, Sage, now sixteen, still misses her deeply. Their mother perished in a car crash, and Sage's stepfather, Alan, resents being burdened by a responsibility he never wanted.

Is there a movie about Willowbrook State School? ›

A shocking exposé of the deplorable conditions and abuses from the Willowbrook State School for children with intellectual disabilities. A shocking exposé of the deplorable conditions and abuses from the Willowbrook State School for children with intellectual disabilities.

How long did the Willowbrook experiment last? ›

The study began in 1956 and lasted for 14 years. The researcher also wanted to determine the effectiveness of gamma globulin injections as protection against hepatitis.

Why did Geraldo Rivera expose Willowbrook? ›

The film, with then Eyewitness News reporter Geraldo Rivera, was one of the first exposes on local television. Rivera broke the stories, after doctors, disgusted by what they were seeing at Willowbrook, let him in -- to tell the world what was really going on behind closed doors.

Who broke the Willowbrook story? ›

Conditions and questionable medical practices and experiments prompted US Senator Robert F. Kennedy to call it a "snake pit". The institution gained national infamy in 1972, when Geraldo Rivera did an exposé on the conditions there.

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