Who was in it
SENATOR ROBERT F. KENNEDY, who condemned it in 1965; GERALDO RIVERA, whose 1972 film ended it; DR MICHAEL WILKINS, who gave him the key; SAUL KRUGMAN; BERNARD CARABELLO, a resident with cerebral palsy and no intellectual disability, held there for eighteen years; GOVERNOR HUGH CAREY, who signed the consent decree.
Of note
WILLOWBROOK IS THE STRONGEST CASE IN THIS ERA FOR THE VALUE OF AN OUTSIDER WITH A CAMERA, and it repeats the pattern set at Bethlem in 1814 (153) and Blackwell's Island in 1887 (156) exactly. Nothing in the film was news to anyone who worked there. Robert Kennedy had said it publicly seven years earlier, on the record, as a United States senator, and nothing changed. WHAT CHANGED IT WAS FOOTAGE.
THE HEPATITIS STUDIES DESERVE MORE CARE THAN THEY USUALLY GET. Krugman's defenders noted, correctly, that hepatitis was endemic at Willowbrook and that nearly every child caught it anyway; his findings contributed to a vaccine. THE OBJECTION IS NOT THAT THE SCIENCE WAS WORTHLESS. It is that consent obtained from parents desperate for a place in an overcrowded institution is not consent, and that the children themselves were never asked and could not have been. That is the same defect as in 158 and 160, arrived at from a different direction.
BERNARD CARABELLO SHOULD BE NAMED WHENEVER THIS PLACE IS. He had cerebral palsy, no intellectual disability, and spent eighteen years inside because the two were confused on admission.
Its people
Saul Krugman
—
Directed the Willowbrook hepatitis studies · 7 April 1911 – 26 October 1995 · active 1956–1970s
A distinguished paediatric infectious disease researcher who, from 1956, DELIBERATELY INFECTED CHILDREN AT WILLOWBROOK WITH HEPATITIS in order to study its natural history and test gamma globulin. His work distinguished hepatitis A from B and contributed to vaccine development. His defence, which was substantial, was that hepatitis was endemic at Willowbrook and virtually every child contracted it anyway, and that parental consent was obtained. THE OBJECTION IS THAT ADMISSION TO AN OVERCROWDED INSTITUTION WAS EASIER FOR FAMILIES WHO CONSENTED, and that the children themselves were never asked and could not be. He received major professional honours during and after the controversy.
Before the law. Never sanctioned. The studies had institutional approval under the standards of the time.
Where things stand. Deceased 1995. THE CASE IS TAUGHT IN EVERY RESEARCH ETHICS CURRICULUM and remains genuinely contested — the science was real, the consent was not free, and both statements are true at once.
- 1956 The hepatitis studies begin at Willowbrook.
- 1960s Findings distinguish hepatitis A from B; contribute to later vaccines.
- 1970s The studies end amid growing ethical criticism.
- 1972 The Rivera broadcast; the wider scandal engulfs the institution.
- 1995 Dies.
Checked 2026-09-05
Geraldo Rivera
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Reporter; made Willowbrook: The Last Disgrace · born 4 July 1943 · active 1972
In JANUARY 1972, as a local reporter for the ABC affiliate in New York, he entered Willowbrook State School with a film crew and a key supplied by a doctor, and broadcast what he found. WILLOWBROOK: THE LAST DISGRACE showed naked residents, untreated injuries and one attendant to dozens of children. Robert Kennedy had said much the same publicly in 1965 and nothing had changed; THE FOOTAGE CHANGED IT. A federal class action followed within two months and the consent decree three years later. His later television career was controversial in ways that have little to do with this file, and are not its subject.
Before the law. None arising from the broadcast.
Where things stand. Living. THIS FILE RECORDS THE 1972 BROADCAST AND MAKES NO CLAIM ABOUT HIS CURRENT EMPLOYMENT, which has changed repeatedly and is the kind of detail that goes stale fastest.
- JANUARY 1972 WILLOWBROOK: THE LAST DISGRACE is broadcast.
- 17 MARCH 1972 Parents file the federal class action.
- 5 MAY 1975 Governor Hugh Carey signs the Willowbrook Consent Decree.
- 17 SEPTEMBER 1987 Willowbrook closes.
Checked 2026-09-05 · living: health details are kept at home
Bernard Carabello
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Willowbrook resident; disability rights advocate · born c.1951 · active 1957–present
Admitted to Willowbrook as a small child and held there for EIGHTEEN YEARS. HE HAS CEREBRAL PALSY AND NO INTELLECTUAL DISABILITY — the two were confused on admission, and the error cost him his childhood. He was one of the residents who spoke to Geraldo Rivera in 1972, and he left the institution that year. He went on to found the SELF-ADVOCACY ASSOCIATION OF NEW YORK STATE in 1986 and worked for decades as a governor-appointed advocate within the New York State agency responsible for developmental disabilities.
Before the law. None. He was detained by administrative placement, not by any court.
Where things stand. LIVING — confirmed active and publicly honoured in 2025. HE IS THE STRONGEST SINGLE ARGUMENT AGAINST THE INSTITUTION: everything Willowbrook concluded about him was wrong, and it took eighteen years and a television camera to correct it.
- c.1957 Admitted to Willowbrook as a child.
- 1972 Speaks to Geraldo Rivera; leaves Willowbrook after eighteen years.
- 1986 Founds the Self-Advocacy Association of New York State.
- 1970s–2010s Serves for decades as an advocate within New York State disability services.
- 2025 Publicly honoured for his advocacy.
Checked 2026-09-05 · living: health details are kept at home