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 A large wooden sign with electric lights and the words “Willowbrook State School” that stood at the Victory Boulevard entrance from the 1960s into the 1970s.

Courtesy of Geraldo Rivera

Willowbrook State School opened in 1948 as the largest institution in the world for the treatment of people with developmental disabilities, separating them from the mainstream of society. In 1938, the New York State Legislature had authorized the building of a school for what they then termed “mental defectives.” The Willowbrook site was selected and the buildings were erected in the early 1940s.

Two Halloran Hospital patients in wheelchairs. They make weight belts as part of their physical and occupational rehabilitation following injuries sustained in battle. This image appeared in the Halloran Beacon, the hospital’s magazine.

Courtesy of David Goode Collection

However, when the U.S. entered the Second World War, the site was turned over to the military for use as a hospital and prisoner-of-war camp – Halloran Hospital – that operated until 1951. As the hospital was closing down, the entire site returned to its original intended purpose as the Willowbrook State School. 

The iconic six-story hospital, Building 2 at Willowbrook State School, in the 1950s. Two horizontal wings extend from a narrow central tower topped with a lighted beacon. This building no longer exists; its site is now “The Great Lawn” of CSI/CUNY.

Courtesy of Archives and Special Collections, College of Staten Island/CUNY

Places like Willowbrook had existed for hundreds of years in Europe. U.S. physicians imported European models into the U.S. in the 1800s. New York State built its first large institution in 1852, and subsequently many others. When Willowbrook was built in the late 1930s, it was by no means unique. Many similar but much smaller institutions existed in New York State and across the country at that time.

In a photograph intended to give a positive impression of conditions at Willowbrook, six nurses in starched white uniforms care for eleven well-dressed toddlers. The children sit in small chairs at tables with the nurses engaged with them.

Courtesy of Diane Buglioli Collection

From its opening, the Willowbrook State School was presented to the public as an ideal place for residents. Over time, a number of photographs depicting numerous staff helping well-served residents appeared in newspapers and other publications. Residents were depicted receiving therapies and engaged in activities that included job training. In reality, in many buildings, residents had few staff assigned to their care.

Seven young Willowbrook residents in three “Cripple Carts.” Some are withdrawn, but others make direct eye contact.  Many have thin, emaciated limbs draped over the edges of their carts or frozen painfully in the air. On the wall, a cartoon figure of Mickey Mouse dances in stark contrast to the cheerless surroundings.

Courtesy of Jon Senzer, photographer.

In order to manage many residents with few resources, practices developed that could cause harm. One of these practices was the use of “Cripple Carts” -- rolling wooden carts originally used for residents who had physical disabilities, like Spina Bifida, who could not use wheelchairs. At Willowbrook, these carts were adapted more generally to make it easier for a single staff member to move many residents around at once. As a result, residents were crowded into carts and parked in dayrooms for hours with little stimulation or care. This neglect robbed residents of the opportunity to reach the developmental potential they would have had if they had been treated differently.

Murray Schneps tenderly embracing his daughter, Lara, a resident at Willowbrook State School. This image was the cover for his book I See Your Face Before Me about his long struggle to protect his vulnerable child. Lara’s shows her happiness to be in her father’s arms.

Courtesy of Vickie Schneps

Many families agonized over the decision to place their children in such impersonal facilities where staff struggled to meet even the children’s basic needs. Rather than keeping their child at home where almost no community therapies or education were available, many families hoped that institutionalization would be in the best interest of their child.

In the Dayroom of a Willowbrook ward, clothed and unclothed residents sit idle and bunched together on hard benches. One resident is curled up on the cold floor. This crowding and the lack of clothing or supervision led to the rapid spread of disease among residents.

Courtesy of Bob Adelman, photographer/Adelman Images LP

In fact, as budget cuts consistently deepened and the number of residents grew, Willowbrook became an inhumane warehouse. When Senator Robert F. Kennedy visited the institution in 1965, he argued that the housing of 6,000 there had made Willowbrook “a snakepit.”

Families protest Willowbrook conditions in 1971. Their large painted signs read, “Shame! Shame! Willowbrook” and “Dr. Wilkins and Mrs. Lee MUST BE REINSTATED.” One hand-written sign says “Willowbrook Escuela o Prisión (‘Willowbrook School or Prison’)”

Courtesy the New York State Office for People With Developmental Disabilities (OPWDD)

Families whose children resided in the School, as well as staff who worked there, had long advocated for change. Only in the early 1970s were they successful in making those outside of the system aware of the problems inside the facility.  

On the front page of the Staten Island Advance from 1971, a large headline reads “Willowbrook: Inside the Cages.” This was part of a month-long series of articles that raised awareness of the problems at Willowbrook.

Courtesy The Staten Island Advance and William Bronston.

For a month in the fall of 1971, Staten Island Advance reporter Jane Kurtin published a series of daily articles revealing the appalling conditions at the School. Kurtin’s ground-breaking journalism coincided with and amplified parent protests about conditions. She was accompanied by photographer Eric Aerts, who captured chilling images of the conditions in which residents were living.

Geraldo Rivera and his ABC television news team in 1972. The group of men, holding cameras and microphones, stand beneath a neon sign that reads “Tina’s Diner” with a large arrow pointing downward.

Courtesy Geraldo Rivera

Willowbrook physicians William Bronston and Michael Wilkins made families and the community aware of the problems caused by understaffing and overcrowding. In 1972, Drs. Bronston and Wilkins brought ABC reporter Geraldo Rivera onto the grounds to film. Rivera’s televised exposé brought Willowbrook State School to national attention in an explosive and realistic investigation into the cold, stark, inhuman institutional setting.

Most importantly, in combination with Kurtin’s reporting, the exposé gave a platform for residents and their families to be heard and set the foundation for a 1972 class-action lawsuit that established that Willowbrook residents had a constitutional right to be protected from harm.

In a chaotic still-shot from the Rivera expose, a single nurse stands in a dark room illuminated by the camera light. A number of residents stand, sit, and lie around her as she works.

Courtesy Geraldo Rivera

The harm from which residents had a right to be protected – abuse and neglect – was not simply the result of “bad” people working there. In fact, the vast majority of caregivers did their best to help residents under horrible conditions. But, typically, one nurse was responsible for up to 100 residents’ care, sometimes in multiple buildings. To understand why things became as bad as they did, one needs to appreciate several factors.

A stark image of residents lying on the floor, hugging their knees, leaning against the stained wall, and staring blankly into space. There are four people, but only one chair. The figures cast shadows on the wall, emphasizing their isolation.

Courtesy The Staten Island Advance

It is important to appreciate that Willowbrook was a “total institution” – that is, a place where a large number of powerless people are put under the total control of a small number of powerful ones. Scholars have long known that this creates forms of social pathology, including physical and mental abuse. Both residents and staff are powerfully influenced by such places. They both tend to conform to their assigned roles.

The back of a young resident showing wounds in the shape of keys, resulting from being beaten by a staff member using their heavy metal keys. She holds her arms close to her chest as she is hunched over.

Courtesy Bill Bronston

This creates an atmosphere where caregivers are able to justify to themselves doing things they would never do outside the institution. Many instances of staff abuse of residents happened at Willowbrook. This photograph shows wounds a young female resident suffered when a staff member beat her repeatedly with large, heavy keys. Worse incidents were also documented. The dynamic of abuse of residents was not unique to Willowbrook. It existed all over the country at many similar total institutions.

In addition, Willowbrook operated at a time when persons with disabilities were devalued by society. The growing disability rights movement had yet to gain recognition and, as with other underrepresented communities, the full humanity of persons with disabilities was not generally appreciated. Families with children with disabilities often endured shame and social ostracism.

When workers came to Willowbrook, they usually had no experience with or knowledge of disability. When they arrived, they would find the residents in crowded conditions with inadequate clothing, food, or education. This contributed to their perception of residents as less than human.

The front page of the Staten Island Advance in February of 1972 with the headline, “Willowbrook’s need: ‘Budget Twice as Big.” Budget cuts escalated in 1969 in the midst of a New York state financial crisis.

Courtesy the Staten Island Advance

Inadequate numbers of staff, largely untrained, struggled with their responsibility for too many residents and without resources. Then the budget cuts that occurred, especially in the 1960s, made these shortages even more critical.

About a dozen partially-clothed residents unsupervised in a dayroom. Several sit on plastic chairs around a small table, on which sits another man with his knees pulled up to his chin. Others stand, looking out the window, or sit in chairs around the wall.

Courtesy Bill Bronston Collection, The Archives & Special Collections, College of Staten Island/CUNY

A final reason why Willowbrook became as bad as it did was the indifference of New York State government. Employees -- including doctors -- who raised concerns about conditions were fired, while advocates were ignored or treated with arrogance by State officials. 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 early 1970s. 

These efforts formed the foundation of a disability rights movement that is still underway. Families and advocates demanded an appreciation of the humanity of all people with disabilities. Self-advocating former residents, such as Bernard Carabello, told their stories and resisted attempts to silence them and to erase the history of Willowbrook. Together, this coalition of  advocates worked to create community care systems and to close large institutions through legal actions. 

A plaque at CSI commemorating the 1987 closure of Willowbrook State School. The plaque is on a large boulder in the Memorial Garden. It depicts the central building with text below it, which is transcribed below. It is captioned “A Promise Fulfilled.”

Courtesy Archives and Special Collections, The College of Staten Island/CUNY

In 1975, a Consent Judgement was entered in the 1972 Willowbrook lawsuit. That Judgement ordered that Willowbrook residents receive humane treatment and adequate clinical and educational services. This also set in motion the eventual closure of Willowbrook in 1987 and began the development of community-based services. It mandated a reduction from 6,000 to 250 residents by 1981. 

Text on the Image:
The institution once known as the Willowbrook State School, which occupied this site for thirty-six years, was closed in 1987.
 The end of this institution symbolizes the success and appropriateness of New York State’s commitment to provide and extensive and comprehensive program of community living opportunities for its citizens with mental retardation and developmental disabilities. 
Mario Cuomo, Governor
Arthur Y. Webb, Commissioner, Office of Mental Retardation and Developmental Disabilities
September 17, 1987

Cover page for the class-action lawsuit that led to the Consent Judgement in 1975, listing the plaintiffs, made up of advocacy organizations and individual residents with their guardians.

Courtesy Hal and Laura Kennedy

These changes were revolutionary. They can be linked to the placement of people with developmental disabilities in community residences, the growth of voluntary agencies, the expansion of special education and day programs, and the training of direct-care workers, therapists, teachers, and administrators.

Cover page for the class-action lawsuit that led to the Consent Judgement in 1975, listing the plaintiffs, made up of advocacy organizations and individual residents with their guardians.
New York Association for Retarded Children, Inc.;
Benevolent Society for Retarded Children, Willowbrook Chapter, of the New York State Association for Retarded Children;
Lara R. Schneps, by her father Murray B. Schneps;
Nina Galin, by her mother Diana Lane McCourt;
Anthony Rios, by his father, Jesus Rios;
David Amoroso, by his mother Rosalie Amoroso;
Rose Evelyn Cruz, by her father Francisco M. Cruz;
Barry Friedman, by his father Melvin Friedman; 
Lowell Scott Isaacs, by his father Jerome M. Isaacs; 
Antoinette Magri, by her mother Sandra Magri.

Nelson Rockefeller;
Alan D. Miller, M.D.;
Roderic Grunberg, M.D.;
Robert E. Patton;
Charles Schleifer;
Jack Hammond, M.D.;
Robert W. Hayes;
Bertram Pepper, M.D.;
A. Anthony Arce, M.D.;
James M. Murphy, M.D.;
Manny Sternlicht;
Milton Jacobs, M.D.


President George H.W. Bush Signs the ADA

Courtesy The George H.W. Bush Presidential Library and Museum.

Along with the 1975 Education for All Handicapped Children Act, the Willowbrook Consent Judgement helped lead to later key legal protections, including the 1990 Americans with Disabilities Act (ADA) and the U.S. Supreme Court’s Olmstead decision (1999).

Elizabeth Connelly meets with a Staten Island Developmental Center program participant in 1985, in the center that was later named for her. Connelly sits knee-to-knee with a man in a wheelchair, their eyes meeting as they interact. Her hand extends toward his outreached hand.

Courtesy the Staten Island Advance

The broader impact on care for persons with disabilities included the creation of a range of community services, many made possible through the work of State Assembly representative Elizabeth Connelly. These services were also made available to those who had never been institutionalized. This gave new options to families that were more supportive of quality of life for all involved than institutionalization could ever be. 

The Willowbrook story provides a stark reminder of the societal loss when people are segregated due to their difference, whatever that difference may be. At the same time, it reveals how advocacy and visibility can change this.

In this still shot from the film Willowbrook (2012), two doctors walk through a research ward with well-clothed patients and clean, calm surroundings, ostensibly made possible through funding for unethical research that harmed children.

Courtesy Russ Cohen

The Willowbrook story also reveals how the devaluation of persons with disabilities could lead to their use in unethical research. From its opening, medical and psychological research was central to Willowbrook’s mission and produced many contributions to medicine and habilitation.

There were programs of research on electroshock therapy, drug therapies, endocrinological studies, genetic diseases, and communicative diseases such as rubella and hepatitis (common at Willowbrook). Psychologists conducted research on resident intelligence, therapies involving parents, the effects of institutionalization, and testing and assessment with special populations.

Flyer from a 1972 protest against hepatitis researcher Saul Krugman of NYU; the protest was mounted by medical students and a group of Black doctors who considered the use of Willowbrook residents for research without their consent to be racist. It is headed, “STOP RACIST KRUGMAN.”

Courtesy Archives and Special Collections, The College of Staten Island/CUNY

Today, some research conducted at Willowbrook is held up as an example of unacceptable breaches in human subject research. The most infamous of these are the Willowbrook Hepatitis Studies of the 1950s and 1960s. In these, children at Willowbrook were infected with hepatitis to study the disease’s progression. The lead researcher used highly unethical procedures to convince parents to allow their children to be so infected. The resulting scandal and legal challenge successfully blocked medical research at Willowbrook through a 1973 US District Court ruling. This ruling is often mentioned as one of the main reasons there are now federal ethical guidelines for medical research.

Program cover for an event at the Willowbrook site commemorating the 25th anniversary of the Consent Judgement, May 2000.

Courtesy Archives and Special Collections, The College of Staten Island/CUNY

On May 2, 2000, the College of Staten Island/CUNY and the Staten Island Developmental Disabilities Council sponsored an all-day conference at the College attended by over four hundred people recognizing the 25th anniversary of the Willowbrook Consent Judgement. This conference highlighted the significant events and individuals that led to the eventual closing of the gates at Willowbrook and the opening of the doors of opportunity for thousands of New Yorkers with intellectual disabilities.

The circular blue-and-white Seal of the Staten Island Developmental Disabilities Council, depicts an inclusive ring of advocates holding hands, surrounded by the organization’s name and founding date of 1969.

Courtesy Staten Island Developmental Disabilities Council

Spurred by a conviction that nothing like the Willowbrook story should ever happen again, the Council – the primary advocacy group on Staten Island for people with disabilities and their families – formed the Willowbrook Property Planning Committee in 2005. The Committee began to work on collecting and preserving the history of the Willowbrook State School to increase the visibility of the stories of those who had once lived and worked in the facility.

The logo of the Willowbrook Mile shows sixteen human figures of varying physical abilities silhouetted against the now-demolished Willowbrook Building 2 as they traverse the Mile together. Along the bottom of the logo are the words “Willowbrook Mile.”

©College of Staten Island/CUNY

In 2012, the Council partnered with other stakeholders – the College of Staten Island/CUNY, the NYS Institute for Basic Research (IBR), and the Office for People with Developmental Disabilities (OPWDD) – to establish a memorial walking trail on the former Willowbrook State School site that is now the Willowbrook Mile.

The Willowbrook Mile groundbreaking ceremony on September 16, 2016 – former resident Bernard Carabello, Diane Buglioli, David Goode, Geraldo Rivera, Michael Cusick and CSI/CUNY President William Fritz unify the original properties of the former Willowbrook State School.

©College of Staten Island/CUNY

The Willowbrook Mile Committee dedicated itself to ensure that whatever the final format this memorial should take, that presence had to be inclusive, progressive, productive, creative, collaborative, sustainably-designed, and both philosophically and physically universally-accessible to people of diverse abilities and needs. This unique project aims to preserve the site’s history and create a visionary presence that commemorates the continuing struggle for social justice for all people of all abilities.