Willowbrook Mile ceremony celebrates progress, pushes for greater disabled awareness

More than 400 people recently gathered at the College of Staten Island to commemorate the opening of the Willowbrook Mile — a circular mile of the campus fitted with 12 plaques explaining the history of Willowbrook and celebrating the progress that has been made since its closing. 

Willowbrook State School opened in 1947 and quickly became the world’s largest institution for people with intellectual and developmental disabilities (IDD). The institution was built to house 4,000 people, but by the mid 1960s over 6,000 people were being housed at Willowbrook, creating an overly crowded, understaffed and inhumane living situation. 

In 1965, Robert Kennedy famously called it a “snake pit,” yet it was not until the Staten Island Advance reporter Jane Kurtin began documenting these conditions in the news that people began to pay attention. Her reporting led parents of the institutionalized and doctors within Willowbrook to attract television reporter Geraldo Rivera, who did an exposé entitled “Willowbrook: The Last Great Disgrace” about the inner-working of the so-called school in 1972. 

Two months later, the Legal Aid Society and the New York Civil Liberties Union, on behalf of parents of residents and the residents themselves filed a class action lawsuit in pursuit of humane treatment and injunctive relief. New York ARC v. Rockefeller was filed in 1972 and settled in 1975 by former New York Governor Hugh Carey. 

While the Willowbrook Institution finally closed in 1987, the fight to ensure fair treatment of people with IDD is never-ending. Parent advocate and member of the Willowbrook Mile Committee Lauren Kennedy said that the Mile provides an opportunity to continue the conversation on changes that need to be made in order to promote inclusivity to the IDD community. 

“We have much advocacy to do today, because though we have made significant advances since 1975, the last 10 years have been a struggle for people with IDD in this state. [There have been] severe cutbacks over the last decade and there are thousands of people on the waiting list to get programs and to get a residence in the community as a permanent home,” Kennedy said. 

Alongside her Willowbrook Mile Committee members, Kennedy has been working to create the historical exhibit since 2006. The Staten Island Developmental Disability Council formed a committee to organize a way of recognizing the history of Willowbrook for members of the general public as a way to never forget the tragedies that occurred. 

State Assemblyman Michael Cusick secured state funding for the Mile project in 2016 and the Mile was finally opened on Sept. 17 of this year. 

In her speech addressing the Willowbrook Mile Ceremony attendees and Willowbrook class members present at the ceremony, Willowbrook Legacy Committee Member and Member of the AVSPNY Board of Directors, Diane Buglioli said, “This property has evolved to something it never was before; it is progressive educational, creative, inclusive and collaborative. Whether you have been involved for years, or you are here today to support this project, we share together the bittersweet story of this property: the isolation and tragedy of institutionalization, the heroic activism that closed it, and the uphill battle for needed support and opportunities for people with developmental disabilities and their families.”

Even so, AHRC New York City President Raymond Ferrigno said that lack of funding and commitment by the government, less support for new residences and little fiscal support of service professionals are just some of the hurdles that face IDD advocacy today. 

Yet, as the father of a young man with Autism, Ferrigno said that the Willowbrook litigation has benefitted his own family, with the fall of Willowbrook occurring just 21years before the birth of his son.  

“Willowbrook is the legacy inherited by parents, a legacy we are charged with remembering and sharing but most importantly safeguarding for our children and all the children and families to follow. Families must never have to make the decision to institutionalize their child because they have no choice,” Ferrigno said via email. 

Near the end of her speech, Buglioli addressed members of the IDD community present at the ceremony. 

“This world benefits greatly by you being in it and was greatly lessened when you were not. I hope that we have been successful in infusing this Mile with our respect for those who suffered through this experience and that the spirit of all of the Class members resides here on this path,” Buglioli said. 

For more information on The Willowbrook Mile, visit The College of Staten Island website, csi.cuny.edu. For information regarding IDD advocacy, visit ahrcnyc.org and avspny.org.