ALBANY — Disability rights advocate Bernard Carabello would have liked to be an attorney, something he wishes more people would ask him about. But more often than not, Carabello, 73, is peppered with questions about a much darker period in his life: the 18 years he spent as a child and young adult at the infamous Willowbrook State School, a now-defunct Staten Island institution for people with disabilities that gained notoriety for its dehumanizing treatment of residents.
Emblematic of an era of institutionalizing some of the state’s most vulnerable residents, Willowbrook’s death knell sounded just over 50 years ago, after a 1972 television expose revealed to the broader American public how the institution routinely neglected and abused thousands of residents in overcrowded conditions. The revelations led to a statewide shakeup in the institutionalization of developmentally disabled individuals.
Carabello, who spoke in Albany last week during a documentary screening hosted in part by the New York State Developmental Disabilities Planning Council, was an integral part of that expose. He’d been living at Willowbrook since the age of 3. When he was 21, Carabello was approached by former ABC journalist Geraldo Rivera and agreed to publicly share his experiences. Life at Willowbrook was a “disgrace,” Carabello said, pointing to budget cuts under former Gov. Nelson A. Rockefeller.
Willowbrook, which finally shuttered in 1987, remains one of the most glaring examples of a failed system of state accountability for the care of developmentally disabled people in New York. Its name has become synonymous with the “warehousing” or institutionalization of people with disabilities. Following its closure, legislation was passed at both the state and federal level to ensure that people with disabilities were not housed en masse in Willowbrook-like institutions across the country.
“Willowbrook, as a concept, doesn’t work. And we can never go back to it again,” said Diane Buglioli, a Staten Island resident who worked at Willowbrook for 10 years beginning in 1969 when she was 19. “People were locked out of buildings at Willowbrook. But if people do not have services and they’re locked out of services, it’s the same thing really.”
Carabello and Buglioli were among a handful of Willowbrook “alumni” who attended the screening of “The Path Forward: Remembering Willowbrook,” at the Hart Theater in Albany last week. Many were instrumental in the years-long push to shut the troubled institution’s doors for good.
Many of the alumni spoke about the positive change that has resulted since Willowbrook’s closure, including the transition of individuals with disabilities to smaller group homes with more individualized attention and vastly improved treatment. Carabello went on to found the Self-Advocacy Association of New York State, which encourages people with disabilities to advocate on their own behalf.
But alumni also said they can see echoes of Willowbrook even today. They cite the major fight looming in Albany for home care workers that assist vulnerable and disabled New Yorkers; a massive understaffing and workforce crisis has advocates worrying that Willowbrook is happening again, if on a slightly smaller scale.
“There’s a feeling that, ‘we’ve achieved.’ And that’s a mistake. That’s a false sense of security,” said Jose Rivera, whose brother Louis lived in Willowbrook for years when he was a child. “Hands-on staff aren’t being paid the kind of wages they deserve for the job they’re expected to do. … What we’ve achieved doesn’t mean we stop and slow down. We need to continue to build on those accomplishments.”
Abuse and neglect
The 1972 TV report detailed abuse and degradation at Willowbrook that are graphic and hard to stomach, including images of children locked up in their crowded wards rocking back and forth to comfort themselves, sometimes wailing or staring blankly.
Due to dismal staffing ratios, distant or harried staff attendants were usually outnumbered 40-to-1, giving them just minutes to feed and clean one resident before moving to the next. Most of the residents lived in barracks-style quarters, where living conditions were filthy and soiled. Many people were left naked or wore coarse, cheap garments. Both sexual and physical abuse were rampant.
Residents were treated like animals or worse, Carabello said, recalling staffers washing children with the same rags and bucket used to wash the floors. Former U.S. Congressman Mario Biaggi told Rivera during a televised tour of the facility that the residents were enduring the “worst possible conditions I’ve ever seen in my life.”
Among panelists who spoke in Albany last week was Willie Mae Goodman, whose daughter Margaret was placed in Willowbrook when she was 4 years old. When Goodman would visit her daughter on Sundays, Margaret’s hair would be matted, her dirty fingers stuck together and unwashed, Goodman said.
In 1962, Margaret was one of 200 children who were quietly transferred to the former Gouverneur Hospital in Manhattan from Willowbrook to relieve overcrowding. Goodman and a group of parents mobilized, turning to state and federal courts to win better care for their children — which would ultimately be a precursor for a larger class-action lawsuit against Willowbrook and the state’s system for disabled people.
Goodman, now 91, credited the fight for highlighting the power of community and parental advocacy on behalf of some of the most vulnerable groups in the state. And during the Albany screening, she urged state officials to “put people first, not paper first.”
Perennial fight
Those affected by Willowbrook acknowledged that significant improvements have been made to the system. Landmark federal legislation like the Americans with Disabilities Act of 1990 has its roots in the public outcry and advocacy the institution spurred.
But perennial fights break out in Albany around a system that advocates and lawmakers say has been historically underfunded, especially as an affordability crisis has swamped the state. Lawmakers are pushing for an 8.5 percent cost-of-living adjustment for direct support professionals who work with New Yorkers with disabilities, an expansion of Gov. Kathy Hochul’s proposal of a 2.5 percent cost-of-living adjustment for the same individuals.
Difficulty in recruiting high-quality staff can lead to adverse outcomes for many New Yorkers with disabilities.
“People wind up getting nothing more than custodial care — fed, bathed, put to bed,” Rivera said.
Meanwhile, emotional and physical scars still remain for those who lived through the Willowbrook experience, like Cabarello, who said he still has moments of anger when he thinks about his childhood.
Though Goodman’s daughter Margaret is still alive, and Rivera’s brother Louis died years after leaving Willowbrook; some lost family members while the institution was still operating.
Pediatrician Debra Weissbach’s brother Robert was sent to Willowbrook in 1958, when he was 5 years old. Photos of her brother show him as a cherubic and full-cheeked toddler, who was nonverbal. Everyone Weissbach’s parents consulted told them that Robert needed the type of care Willowbrook could provide.
By the time he died 10 years later in 1968, Weissbach said her brother had become a virtual ghost in their family, too painful for her parents to mention. She recently requested the autopsy from the state’s medical examiner to investigate the circumstances around her brother’s death attributed to some sort of traumatic event he experienced while in custody.
Now, Weissbach said she sees patients with disabilities ranging from mild to severe and said her brother’s death — and time at Willowbrook — have slowly given her a sense of gratitude instead of shame.
“Willowbrook has become a positive force in my life instead of the shameful one that it was for many years,” Weissbach said. “But we always need to remember, so it doesn’t happen again.”