“The doctor had warned me that it would be bad. It was horrible.” — Geraldo Rivera, Willowbrook: The Last Great Disgrace, January 1972
The Willowbrook State School was, at one time, the largest institution for individuals with intellectual and developmental disabilities in the nation. It was located in Staten Island, New York, and began operation in 1947. What started as an attempt to care for these individuals quickly devolved into a horrific scene of abuse and neglect of vulnerable children and adults.
Funding cuts, lack of adequate staffing, and lack of oversight of the facility’s practices contributed to the dehumanizing conditions. Many children living in the facility went without clothing. They developed diseases like pneumonia and hepatitis at alarming rates due to overcrowding and filthy conditions. In fact, 100 percent of the children contracted hepatitis within months of arriving at the facility. Also, less than 20 percent of the people living in this facility ever received any education.
The horrors of Willowbrook were not a secret. Sen. Robert F. Kennedy visited the school in 1965 and famously described it as a “snake pit” after witnessing the abuse and neglect. There was temporary public scrutiny, but no real changes. It took an exposé by Geraldo Rivera, then a reporter at the local ABC station, to generate outrage and change.
Willowbrook: The Last Disgrace aired in January 1972 — 45 years ago. Rivera filmed the deplorable conditions in which the children and adults were living and spoke with a resident who called his care there “a disgrace.”
The resulting public pressure prompted Congress to make changes, including the creation of the Protection and Advocacy system. By federal mandate, every state and territory in the nation must have a Protection and Advocacy agency that works to “ensure legal and human rights of individuals with developmental disabilities through legal action and advocacy.”
In the Tar Heel state, Disability Rights of North Carolina, a nonprofit organization, has served as the Protection and Advocacy agency since 2007. Disability Rights NC advocates for equal rights of people with all kinds of disabilities. The staff also monitor state institutions to ensure the conditions at Willowbrook are never replicated, and they work to ensure that individuals with physical, intellectual, and developmental disabilities, as well as mental illness, have the same access to opportunities as their non-disabled peers.
I have seen how a strong Protection and Advocacy agency like Disability Rights NC directly benefits people with disabilities in North Carolina. Its advocacy work means my family members with disabilities have support to live in the community and have access to education and job training. Its protection work means my patients with disabilities who live in group homes are in safe, clean environments and are able to voice any concerns about their home and treatment.
While many things have improved in regards to the treatment of individuals with intellectual and developmental disabilities since the Willowbrook exposé, more work needs to be done. I encourage each of us to never forget what happened there. I believe our society is judged by how we treat the most disadvantaged in our community. It is imperative that we never become complacent with our progress. We must not only listen to those who advocate for changes in the system, we must take up the mantle of change for ourselves.
(published in the Gaston Gazette 3/17/17: http://www.gastongazette.com/opinion/20170316/my-turn-importance-of-protection-and-advocacy-for-north-carolinas-disability-community)