Willowbrook 51 Years Later: A look at history and modern advocacy
A 1972 exposé by Geraldo Rivera exposed the revolting conditions at the Willowbrook State School, a facility for youth with intellectual disabilities, in Staten Island, New York. The abuse and neglect revealed by this report led to national outcry, successful legal action, and the establishment of a federally mandated network of legal advocacy agencies protecting the rights of persons with disabilities (the Protection & Advocacy Network). 51 years since the exposé’s release, Protection & Advocacy (P&A) agencies, like Disability Rights Tennessee (DRT), are continuing this critical work of investigating conditions of abuse and neglect, reporting these findings, and advocating for workable solutions.
History of Willowbrook
Willowbrook State School, the largest institution for the treatment of people with disabilities, was opened in 1948, separating this population from the mainstream of society.1 Located in Staten Island, New York the facility was pictured by administration to be a safe institution for residents to receive therapy, opportunities, resources, and proper care. On the contrary, it was understaffed, riddled with disease, and unsafe.
In the mid-1900’s, when institutions like Willowbrook were established, there were very little education or therapy opportunities for children with disabilities and families lacked the resources within their communities to care for a child with disabilities. Families were also encouraged by medical professionals to explore institutional placements like Willowbrook. This guidance, coupled with the lack of community support and resources, made Willowbrook seem like the lesser of two evils. Unfortunately, the reality of living (and working) in these facilities during this time was unimaginable. Residents at Willowbrook had a wide range of disabilities, each requiring individualized interventions and specialized care. However, due to severe understaffing and a lack of funding, residents received a “one size fits all” level of care which was later revealed to be widespread neglect and inhumane treatment. Willowbrook residents, which were mostly children, were left unsupervised for hours at a time without support to meet their basic needs, much less access to care that would allow them to reach their full potential.
The conditions at Willowbrook were appalling. Eventually, physicians employed at the institution began to complain. One physician, William Bronston, referred to Willowbrook as little more than a “human warehouse.”2 Willowbrook State School was a public health crisis, fostering abuse and dehumanization of its residents, while actively deceiving the public. Dr. Michael Wilkins shared with reporter Geraldo Rivera that a staggering 100% of residents at Willowbrook contracted hepatitis within six months,3 and it was so rampant here that researchers took advantage of the situation using residents in medical trials and intentionally exposing them to the deadly virus without their consent.4 The reason many parents were deceived into consent for these medical trials was that participation prioritized a child’s acceptance into the institution, and many felt their children needed to be housed and cared for here.
The Exposé of Willowbrook
Willowbrook State School first caught public attention when Senator Robert Kennedy visited the institution in 1965. He found thousands of residents “living in filth and dirt, their clothing and rags, in rooms less comfortable and cheerful than the cages in which we put animals in the zoo.”2 This event, along with journal articles by reporter Jane Kurtin, put Willowbrook in the spotlight prompting the New York State Government to develop a five-year plan for improvement. However, State officials were indifferent to how these residents were being treated, due to an individual with disabilities being “devalued by society” at this time.2 As this was a “total institution,” conditions quickly returned to being unsafe.
Following the failed attempts to expose the horrors at this facility by journalists and staff, investigative reporter Geraldo Rivera released the monumental firsthand investigation and exposé Willowbrook: The Last Disgrace in 1972, catching the public’s attention internationally. This exposé was made possible by two of Willowbrook’s physicians: William Bronston and Michael Wilkins. They reached out to Rivera and brought him onto the grounds to film, allowing him entrance to building six. This moment would become revolutionary for the disability community, the residents in this facility, and Geraldo himself as he captured the abhorrent conditions within.
Rivera’s visit to the unit was unannounced, allowing for a true observation of the setting, without the administration’s ability to prepare. Rivera recalled the experience of this raw moment, stating that “the doctor warned me it would be bad; it was horrible… how can I tell you about the way it smelled? It smelled of filth, it smelled of disease, and it smelled of death.”
Rivera and his team witnessed what they describe to be some of the most unspeakable things they had ever seen in their life. Children were grouped together on the floor, covered in their own feces with one attendant responsible for managing the care of 50+ residents. They were left to sit alone, without social interaction or access to necessary education or treatment. The video documenting this visit shocked the American public, inspiring action and change for the disability community.
Disturbed by the conditions of their children, the parents of Willowbrook residents filed a class action suit alleging that conditions at Willowbrook violated the constitutional rights of residents including the failure to provide habilitation for residents, lack of privacy, and inadequate medical facilities.2 In summary, these residents had a constitutional right to be free from harm within this facility. A U.S. District Court Judge went on to sign the Willowbrook Consent Judgment which set guidelines and requirements for the institution’s operation, and established standards of care for all Willowbrook residents at the time of the settlement. This Consent Judgement has had lasting effects that we can see even today, 51 years later.
Political reaction to this case led to the enactment of more legislation such as the Protection and Advocacy (P&A) system in the Developmental Disabilities Assistance and Bill of Rights Act, the Education for all Handicapped Children Act, and the Civil Rights of Institutionalized Persons Act (CIRPA).2 The Developmental Disabilities Assistance and Bill of Rights Act and CIRPA were the first federal civil rights laws that protected people with disabilities, eventually leading to the enactment of the Americans with Disabilities Act (ADA).2 These Acts paved the way for advocacy today, and their legacies live on even if the laws themselves have changed. They laid a foundation for the needs and rights of individuals with disabilities to be respected and prioritized within care facilities.
As a result of historic legislation protecting the rights of persons with disabilities, Protection & Advocacy agencies were created to ensure people with disabilities are treated equally. As the Protection & Advocacy (P&A) agency for the state of Tennessee, Disability Rights Tennessee works daily to protect and expand the rights for people with disabilities across the state. Through individual and systemic advocacy, DRT ensures Tennesseans with disabilities are free from harm, have access to appropriate treatment, are empowered, and are included in their community. Although the respect for the rights of all persons has made advancements, there is still a critical need for protection and advocacy. Willowbrook: The Last Disgrace set a foundation for agencies like DRT to be present within facilities, monitoring and advocating for those within.
Last year DRT released two reports on this topic after observing facilities in Tennessee under the supervision of the Department of Children’s Services (DCS). These reports have demanded public attention and served as a catalyst for change, just as Rivera’s Willowbrook exposé did 51 years ago. In April 2022, Disability Rights Tennessee (DRT) released a report with Youth Law Center (YLC) titled Designed to Fail. After receiving numerous reports of educational neglect and the use of aversive behavior modifications like solitary confinement and restraint, DRT conducted an 18-month investigation into Wilder Youth Development Center, a facility run by the Tennessee Department of Children’s Services in West Tennessee. The release of this report in early 2022 was a catalyst for significant changes within the facility and prompted the creation of a legislative and oversight committee for TN’s Juvenile Justice practices. Read this report or the executive summary here. In December, DRT and YLC released another report on DCS, Families not Facilities. This report includes additional findings and focuses on a series of recommendations, solutions and steps that need to be taken to improve the situation for children, families and youth trapped in the systems of DCS and the greater youth justice system. Read this report here.
Willowbrook: The Last Disgrace was the stimulus for lasting change in the disability rights world. The bravery of those advocating for its residents resulted in lasting change, still seen today. Although we have made a lot of progress in recognizing the rights of individuals with disabilities, issues are still present. Just as an example, isolation and restraints were improperly used in the mid 1900’s and are still used in this manner today. The work done by P&A agencies nationally is important, as most people will have or know someone with a disability. Disability Rights Tennessee is proud to be a Protection & Advocacy agency in a network established by groundbreaking legislation resulting from the Willowbrook exposé. If you or someone you know is experiencing abuse or neglect in any facility, contact DRT at 800-342-1660 or GetHelp@DisabilityRightsTN.org.