The school was designed for 4,000, but by 1965 it had a population of 6,000. At the time, it was the biggest state-run institution for people with mental disabilities in the United States.[1] Conditions and questionable medical practices and experiments prompted US Senator Robert F. Kennedy to call it a "snake pit".[2] The institution gained national infamy in 1972, when Geraldo Rivera did an exposé on the conditions there.[3] Public outcry led to its closure in 1987, and to federal civil rights legislation protecting people with disabilities. A February 2020 New York Times investigation found that the alumni of Willowbrook continue to be abused in smaller group homes.[4]
A portion of the grounds and some of the buildings were incorporated into the campus of the College of Staten Island, which moved to Willowbrook in the early 1990s.
Construction and early conversion
In 1938, plans were drawn up to build a facility for children who had an intellectual disability on 375 acres (152ha) in the Willowbrook section of Staten Island. Construction was completed in 1942, but instead of opening for its original purpose, it was converted into a United States Army hospital, and named Halloran General Hospital, after the late Colonel Paul Stacey Halloran. After World War II, proposals were introduced to turn the site over to the Veterans Administration, but in October 1947, the New York State Department of Mental Hygiene opened its facility there as originally planned, and the institution was named Willowbrook State School.
Hepatitis studies
Throughout the first decade of its operation, outbreaks of hepatitis, primarily hepatitis A, were common at the school. This led to controversial medical studies being carried out there by medical researchers Saul Krugman of New York University and Robert W. McCollum of Yale University. Between 1956 and 1971, Krugman and McCollum monitored subjects to gauge the effects of gamma globulin in combating it. One result of the research was a better understanding of the differences between serum hepatitis, which is spread by blood transfusions, and infectious hepatitis, which is spread directly from person to person and is the more common form.[5][6] A public outcry forced the research project and medical studies to be discontinued.
Paul A. Offit described Krugman's studies as follows:
In an effort to control outbreaks of hepatitis, the medical staff at Willowbrook consulted Saul Krugman.... Krugman found that hepatitis developed in 90 percent of children admitted to Willowbrook soon after their arrival. Although it was known that hepatitis was caused by a virus, it wasn't known how hepatitis virus spread, whether it could be prevented, or how many types of viruses caused the disease. Krugman used the children of Willowbrook to answer those questions. One of his studies involved feeding live hepatitis virus from others stool samples to sixty healthy children. Krugman watched as their skin and eyes turned yellow and their livers got bigger. He watched them vomit and refuse to eat. All the children fed hepatitis virus became ill, some severely. Krugman reasoned that it was justifiable to inoculate retarded children at Willowbrook with hepatitis virus because most of them would get hepatitis anyway. But by purposefully giving the children hepatitis, Krugman increased that chance to 100 percent.[7]
According to vaccinologist Maurice Hilleman, "They [the Willowbrook studies] were the most unethical medical experiments ever performed on children in the United States."[7] Historian David Rothman notes that, "The research was even included in Henry Beecher's 1966 New England Journal of Medicine listing of 'ethically dubious' experiments."[5] Bioethicist Art Caplan has stated that, "The Willowbrook studies were a turning point in how we thought about medical experiments on retarded children... Children inoculated with hepatitis virus had no chance to benefit from the procedure—only the chance to be harmed."[7]
Scandals and abuses
By 1965, Willowbrook housed over 6,000 intellectually disabled people despite having a maximum capacity of 4,000. US Senator Robert F. Kennedy toured the institution in 1965 and proclaimed that individuals in the overcrowded facility were "living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo" and offered a series of recommendations for improving conditions.[8] Although the hepatitis study had been discontinued, the residential school's reputation was that of a warehouse for New York City's mentally disabled people, many of whom were presumably abandoned there by their families, foster care agencies, or other systems designed to care for them. Donna J. Stone, an advocate for mentally disabled children and victims of child abuse, gained access to the school by posing as a recent social work graduate. She then shared her observations with members of the press.[9]
A series of articles in local newspapers, including the Staten Island Advance and the Staten Island Register, described the crowded, filthy living conditions at Willowbrook, and the negligent treatment of some of its residents. Jane Kurtin was the first reporter to write a story about Willowbrook State School after she visited Willowbrook in order to cover a demonstration that social workers and parents of the residents had organized.[10][11] Kurtin wanted to get inside the buildings, and social workers Elizabeth Lee and Ira Fisher brought her inside. Shortly thereafter, in early 1972, Geraldo Rivera, then an investigative reporter for WABC-TV in New York, conducted a series of investigations at Willowbrook uncovering a host of deplorable conditions, including overcrowding, inadequate sanitary facilities, and physical and sexual abuse of residents by members of the school's staff. Rivera then visited several facilities in California. While the conditions in the California facilities were found to have been significantly improved, the conditions at Willowbrook remained neglectful. The exposé, entitled Willowbrook: The Last Great Disgrace,[3] garnered national attention and won a Peabody Award for Rivera.[12] Rivera later appeared on the nationally televised Dick Cavett Show with film of patients at the school. As a result of the overcrowding and inhumane conditions, a class-action lawsuit was filed against the State of New York by the parents of 5,000 residents of Willowbrook in federal court on March 17, 1972. This was known as New York ARC v. Rockefeller. Elizabeth Lee's employment was terminated in 1972 as a result of her activism with the parents.[13]
In 1975, a consent judgment was signed, and it committed New York state to improve community placement for the, now designated, "Willowbrook Class". The publicity generated by the case was a major contributing factor to the passage of a federal law — the Civil Rights of Institutionalized Persons Act of 1980.
According to a February 2020 New York Times investigation "[t]hat vow has been broken: Many of the institution's 2,300 alumni who are alive today still suffer from mistreatment." The Times reported that in 2019 there have been "97 reported allegations of physical abuse by group home workers against Willowbrook alumni..." also "34 allegations of psychological abuse and hundreds more of neglect and other mistreatment, like improper use of restraints or seclusion, medication errors and theft." Investigations were conducted by the New York State Office for People With Developmental Disabilities but were unable to prove abuse claiming that "Strong union protections allowed them to block their dismissals in arbitration." Bronx County District AttorneyDarcel Clark investigated one facility that houses Willowbrook alumni but found insufficient evidence for abuse, witnesses not willing to come forward, and victims not able to speak for themselves. "It’s not whether or not it happened," she said. "It's what could we prove."[4]
Closure
In 1975, a Willowbrook Consent Decree was signed that committed New York state to improve community placement for the now designated "Willowbrook Class".[14]
In 1983, the state of New York announced plans to close Willowbrook, which had been renamed the Staten Island Developmental Center in 1974. By the end of March 1986, the number of residents housed there had dwindled to 250, and the last children left the grounds on September 17, 1987. After the developmental center closed, the site became the focus of intense local debate about what should be done with the property. In 1989, a portion of the land was acquired by the city of New York, with the intent of using it to establish a new campus for the College of Staten Island, and the new campus opened at Willowbrook in 1993. This campus is the largest maintained by the City University of New York. Within the year, one of CSI's two other existing campuses, located in the Sunnyside neighborhood, was closed, renovated, and reopened in 1995 as the home of the new K-12 Michael J. Petrides School. The rest of Willowbrook's original property is still under the administration of the Office for People with Developmental Disabilities (OPWDD) —an agency of New York State— and houses the New York State Institute for Basic Research in Developmental Disabilities, and the Staten Island Developmental Disabilities Service Office.
On February 25, 1987, the Federal Court approved the Willowbrook "1987 Stipulation", which set forth guidelines that required OMRDD (Office of Mental Retardation and Developmental Disabilities; renamed the Office for People With Developmental Disabilities, in July 2010) community placement for the "Willowbrook Class".[14] The Willowbrook School was closed that year. All but about 150 of the former Willowbrook residents were moved to group homes by 1992. Significant members of the "Willowbrook Class" were not as intellectually limited as the term "developmental delay" would indicate. Some had cerebral palsy, a developmental disability that can be accompanied by varying degrees of intellectual impairment, and some members of this class were cognitively quite intact, yet unable to communicate verbally due to their physical condition. These ex-residents of Willowbrook, many now in their 50s and 60s, live in a variety of community residences and attend day programs throughout New York State, under the care of organizations such as United Cerebral Palsy or the Jewish Guild for the Blind.
In the 1991 book The Soul of a Cop, retired NYPD detective Paul Ragonese describes responding to "building two" of the abandoned Willowbrook campus as a member of the NYPD Bomb Squad. Ragonese describes an abandoned building full of hazardous chemicals, including explosive picric acid crystals, along with rooms full of jars containing specimens of human organs. Ragonese goes on to write that the incident was largely covered up by local officials.[15]
Former students
In 1997, Danny Aiello hosted, and Geraldo Rivera served as commentator for, a 57-minute documentary titled Unforgotten: 25 Years After Willowbrook, which revisits Staten Island's Willowbrook State School, "remembering the over 5,000 children who were living in the facility at the time and focusing on three former residents, to see how the effects of the institution have been felt by families and friends of patients as well."[16] Writes The New York Times reviewer, Stephen Holden:
As graphically as it recounts the horrors of the past, Unforgotten is less concerned with raking the coals of an old scandal than with showing how the treatment of the mentally disabled has since improved. The film ... focuses on the lives of two who were once incarcerated at Willowbrook but subsequently flourished in group homes situated in close proximity to their families. / A third longtime resident of Willowbrook, Bernard Carabello, is also interviewed. Mr. Carabello, who suffers from cerebral palsy, spent 18 years at Willowbrook after being misdiagnosed as mentally retarded at the age of 3. / In looking at the lives of Patty Ann Meskell and Luis Rivera (who died shortly after the film was completed), both of whom spent many years at Willowbrook, the movie stresses their essential humanity. Each is shown interacting with loving family members who are still deeply stung by memories of visits to Willowbrook more than 25 years ago. / The film, narrated by Danny Aiello, isn't so much an investigative documentary as a blunt plea for the humane treatment of the mentally disabled. It also warns that despite changes in social attitudes (the Special Olympics are cited as a shining example of progress), Willowbrook could happen again. Remembrance is a vital key to the prevention of future abuse.[17][18]
In March 2009, a fire in a residence in Wells, New York, killed four members of the "Willowbrook Class".[19]
Willowbrook State Hospital is mentioned in the 2009 documentary movie Cropsey as having reportedly housed convicted child kidnapper Andre Rand, who had previously worked there as an orderly.[20] One of Rand's supposed victims, Jennifer Schweiger, was found buried in a shallow grave behind the grounds of the abandoned Willowbrook State School, which was built under the same design as Pilgrim State Hospital.
In 2011, a former resident of Willowbrook State School, a savant named Anthony Torrone, wrote a Christian prayer book titled Anthony's Prayers that was inspired by his time and the abuse he experienced at the school.[21][22]
Geraldo Rivera is an American journalist, attorney, author, and political commentator who worked at the Fox News Channel from 2001 to 2023. He hosted the tabloid talk show Geraldo from 1987 to 1998. He gained publicity with the live 1986 TV special The Mystery of Al Capone's Vaults. Rivera hosted the news magazine program Geraldo at Large, hosts the occasional broadcast of Geraldo Rivera Reports. He served as a rotating co-host of The Five from 2022 to 2023.
Baruch Samuel Blumberg, known as Barry Blumberg, was an American physician, geneticist, and co-recipient of the 1976 Nobel Prize in Physiology or Medicine, for his work on the hepatitis B virus while an investigator at the NIH and at the Fox Chase Cancer Center. He was president of the American Philosophical Society from 2005 until his death.
The Walter E. Fernald State School, later the Walter E. Fernald Developmental Center, was the Western hemisphere's oldest publicly funded institution serving people with developmental disabilities. Originally a Victorian sanatorium, it became a "poster child" for the American eugenics movement during the 1920s. It later was the scene of medical experiments in the 20th century. Investigations into this research led to new regulations regarding human research in children.
Willowbrook is a neighborhood in Staten Island, one of the five boroughs of New York City. It is located in the region of the island usually referred to as Mid-Island, immediately to the south of Port Richmond, to the west of Meiers Corners and Westerleigh, to the north of New Springville, and to the east of Bulls Head.
Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.
Saul Krugman was a physician, and later pediatrician, whose studies of hepatitis, rubella, and measles resulted in the development of vaccinations for these debilitating diseases. The results of these studies were acquired through unethical medical practices involving experimentation on disabled children, which came to light during the Willowbrook State School scandal of 1987.
Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.
Deinstitutionalisation is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. In the late 20th century, it led to the closure of many psychiatric hospitals, as patients were increasingly cared for at home, in halfway houses and clinics, in regular hospitals, or not at all.
The Family Movement, also known in the past as the Parent Movement, is an arm of the disability rights movement, a larger social movement. The Family Movement advocates for the economic and social rights of family members with a disability. Key elements include: social inclusion; active participation; a life of meaning; safety; economic security; accessibility and self-determination. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship to the current supported decisionmaking; increasing access to health care; developing real jobs; fighting stereotypes and reducing discrimination.
Robert Wayne McCollum Jr. was an American virologist and epidemiologist who made pioneering studies into the nature and spread of polio, hepatitis and mononucleosis while at the Yale School of Medicine, after which he served for nearly a decade as Dean of the Dartmouth Medical School.
Our Voice Today (OVT) is a bi-weekly publication of NYSARC, Inc. Originally published as print newsletter Our Children's Voice in March 1949, OVT has a long history of providing information and resources related to individuals with intellectual and other developmental disabilities.
Elizabeth Ann "Betty" Connelly was a politician from Staten Island, New York who represented the North Shore community from 1973 to 2000. She was the first woman to win elective office to any district encompassing Staten Island.
The Department of Mental Hygiene (DMH) is an agency of the New York state government composed of three autonomous offices:
Letchworth Village was a residential institution located in Rockland County, New York, in the hamlet of Thiells built for the physically and mentally disabled of all ages, from the newborn to the elderly. Opened in 1911, Letchworth Village at its peak consisted of over 130 buildings spread out over many acres of land. It was named for William Pryor Letchworth, who espoused reform in the treatment and care of the insane, epileptics, and poor children.
Anthony Torrone is an American Christian author who has a developmental disability. Torrone's 2011 book, Anthony's Prayers, was inspired by his time and the abuse that he experienced as a resident of the former Willowbrook State School, a New York State mental hospital for children. Torrone has been a resident of Grand Rapids, Michigan since the 1970s.
The New York State Office for People With Developmental Disabilities (OPWDD) is an executive agency in the state of New York, whose mission is to provide services and conduct research for those with intellectual disabilities and developmental disabilities (I/DD). It is one of New York State’s largest agencies, with a mandate to provide services and supports to more than 130,000 people with intellectual or developmental disabilities and leads a workforce of more than 22,000 direct support staff, clinicians, nurses, researchers and other professionals throughout the state. It operates 13 Developmental Disabilities Services Offices (DDSO) which operate group homes for the individuals with intellectual and developmental disabilities in its care. Prior to July 2010, the agency was named the Office of Mental Retardation and Developmental Disabilities (OMRDD).
The United States has experienced two waves of deinstitutionalization, the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability.
William D. Partlow Developmental Center, also known as the Partlow State School and Hospital, was a state school for people with mental disabilities, primarily intellectual and developmental disabilities in Tuscaloosa, Alabama, USA. It was operated by the Alabama Department of Mental Health. It was the last such full-sized facility operated by the State of Alabama and closed in 2011.
William Bronston is an American psychiatrist and activist. Bronston is known for his involvement in the deinstitutionalization of Willowbrook State School in the early 1970s. After returning to California in 1975, Bronston became the medical director of the Department of Developmental Disabilities at the California Department of Health.
"The Promise". The Weekly. Season 1. Episode 27. February 21, 2020. FX.
Grossman, Joel B. (Winter 1987). "Beyond the Willowbrook Wars: The Courts and Institutional Reform". American Bar Foundation Research Journal. 12 (1): 249–259. doi:10.1111/j.1747-4469.1987.tb00536.x.
Klein, Joel (February 4, 1985). "The Lawyers' Plot". New Republic. Vol.192, no.5. p.28.
Peele, Roger (September 1, 1985). "The Willowbrook Wars". The American Journal of Psychiatry. 142 (9): 1111–a–1112. doi:10.1176/ajp.142.9.1111-a.
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