I was very curious about this place called Willowbrook State School and its place in the history of New York State. Some of CDR’s consumers lived at this state operated institution for children that were labeled as mentally-retarded or having developmental disabilities. I often wondered how the children got there and why? I decided to do some research on the subject.

The construction of Willowbrook State School was started in 1938, on a site of 375 acres on a section of Staten Island. Yes, right in the heart of New York, New York. It must have seemed to be such a noble concept at the time. We Americans pride ourselves in taking care of our own. And at that time, taking care of our own came to mean putting children with developmental disabilities into institutions.

Willowbrook’s construction was completed in 1943. But it was opened as a United States Army Hospital and named Halloran General Hospital, after the late Colonel Paul Atacey Halloran.

After the war, proposals were introduced to turn the site over to the Veteran Administration, but in October, 1947 the New York State Department of Mental Hygiene opened the facility there as originally planned, as an institution named Willowbrook State School.

Hepatitis was quite common at the school. This led to a highly controversial medical study being conducted there between 1963 and 1966, in which healthy children were intentionally injected with the virus that causes the disease. Our United States doctors were again putting young citizens at risk for testing trial purchases. And the citizens being used were children with developmental disabilities.

The Hepatitis outbreak was so rampant that no new patients were admitted to the school, but the study was continuing to admit new patients. Parents found that they had to agree to the study in order to admit their children to the school.

Finally, public outcry forced the study to be discontinued because the parents and their children were given little choice about whether or not to participate in the research.

This was only the beginning of the atrocities at Willowbrook.

After a tour in 1965, Senator Robert Kennedy called Willowbrook a “snakepit”, but even with this level of scrutiny, nothing was done to change the horrible conditions in which the children were forced to live.

In early, 1972, Geraldo Rivera, then a reporter for television station WABC in New York, conducted a series of investigations at Willowbrook uncovering a deplorable conditions, including overcrowding, inadequate sanitary facilities and physical abuse of residents by member of the school’s staff.

These reports led to a class action lawsuit being filed against the State of New York in Federal Court on March 17, 1972. A settlement was reached on May 5, 1972, mandating reforms at the site, but several more years lapsed before violations were finally corrected.

The publicity generated by the case was a major contributing factor to the passage of a federal law, called the Civil Rights of Institutionalized Persons Act (CRIPA) of 1980. But even with these documented atrocities, and similar occurrences at many other institutions, it took many years to pass CRIPA and even longer to realize its intent.

After Willowbrook finally closed, it became the focus of a debate on what to do with the property. In 1989, a portion of the property was acquired by the City of New York, with the intent to us it to establish a new campus for the College of Staten Island. The new campus opened at Willowbrook in 1993. At 204 acres, this campus is the largest maintained by the City University of New York. The remaining 171 acres of the Willowbrook property at the south end, is still under the administration of the New York State Department of Mental Health, which maintains a facility there called the Institute of Basic Research in Developmental Disabilities.

To close Willowbrook and end the atrocities committed by the system and by individuals to a massive outcry from the public for change. Change did happen; the laws that came about shifted everything.

And while we say “never again”, it could happen again, so we must never forget. Last summer, an investigation in a nursing facility in Rochester led to the arrest of over a dozen staff for their negligence leading to the death of a resident. We must be ever vigilant against the atrocities that happen to our people inside the seclusion of these facilities.

Our advocacy efforts and the power of our voices will bring about change. People must be able to choose where and how they live. We must be uncompromising in demanding the civil rights of all our people, or Willowbrook will happen again. We must FREE OUR PEOPLE!