Recently, a unique mobile rally and car parade commemorated the 33rd anniversary of the closure of Willowbrook Psychiatric Hospital on Staten Island. Opened in 1947, Willowbrook was, by today’s standards, a horrific institution that warehoused people with developmental disabilities, mental illnesses or any other condition that made them look, act or learn differently. For those unfortunate enough to have been born with or develop a disability or mental illness during that era, placement at Willowbrook meant a life of neglect, abuse and horrifying, inhumane conditions.
I have my own personal horror story of how mentally disabled people are treated. When I married Ellen, she had a son, Ricky, who could not speak or cry and who is now blind. I married Ellen because of the love she had for Ricky, who eventually had to be placed in a special school, Wassaic, in upstate New York. That broke our hearts.
A few weeks after we left Ricky there, we went back to visit him. He had lost half his body weight, was wearing four diapers and had a black tongue. We took him to a pediatrician, who cried when he saw Ricky’s condition. He was later placed in another facility, where he was put in a steaming hot tub and scalded.
Ricky is now 62 and living in a group home, where I visit him often. But I can never forget his wretched treatment, or what it did to him — and to all the members of his family, who love him. The unconditional love for a developmentally disabled child is like no other love imaginable.
Thankfully, we have evolved far from that unenlightened time, and have become a more empathetic human race. On Long Island alone, there are about 5,000 people with developmental disabilities living in smaller group homes and receiving care that far exceeds anything we could have hoped for in the past.
But these changes didn’t come about by accident. The strides forward in the treatment of our special children and adults came only after a lengthy, well-fought battle, beginning with a recognition of this population as human, deserving of basic considerations.
That fight continues today. Organizations and individuals have taken on the challenging role of caring for and housing people with developmental disabilities who can no longer be cared for at home. It is the state’s responsibility to adequately fund those organizations and to ensure that these vulnerable people are cared for and protected, and have some quality of life.
Over the past several years, it has seemed as if state funding for this priority has been anything but a priority. Caregivers who choose a career in nurturing and providing basic care to our special people are so underpaid that they are forced to work second jobs. What has happened to the progress we made and the empathy we gained? We are living in a time when fast-food workers are paid more than those who bathe, feed and dress those who can’t do it for themselves. If this trend continues unchanged, we will certainly slip back to a time that we must vow never to return to.
Willowbrook closed in 1987 — not that long ago, and certainly well past the time when we all should have known better about what gives us our humanity and how it is inextricably tied to how we treat the most vulnerable among us.
If you agree with this and understand this message, please let your voice be heard by making sure Gov. Andrew Cuomo continues to make our special people a priority in the state budget. We all know times are tough and spending is tight. But we simply can’t afford to return to one of our darkest hours. Cuomo can be contacted at https://www.governor.ny.gov/content/governor-contact-form, or by phone at (518) 474-8390.
Harvey Weisenberg, a longtime resident of Long Beach, served in the State Assembly from 1989 to 2014.