My younger brother Fred, labeled as intellectually and developmentally disabled (IDD), was sent in 1956 to the Willowbrook State School, where he resided for 16 years. Had that infamous institution never been shut down, Fred would not be the person he is today: writing poetry, curiously asking how radio waves come out of speakers, and understanding that his vote counts.
But people with disabilities are still viewed as not having lives worth living, a fact exposed in the recently hard-fought battle to defeat New York State budget cuts to their services. Had those cuts been instituted, we would have begun the return to institutionalization because of reductions of available day programs, housing and staff.
My parents were told by doctors it was best for them, for me and for Fred to place him, at the age of four, into Willowbrook. Fred, impaired by a lack of oxygen at birth, was a joyful, lovable child — my little brother who the neighborhood kids from the Brooklyn Sheepshead-Nostrand housing project would keep an eye on when we were outside on the benches and I had to go upstairs.
Early intervention, practiced today, would have encouraged his thinking for himself rather than learning dependency. Institutions are buildings, not homes; as reported in Sheila and David J. Rothman’s iconic “The Willowbrook Wars,” the building trades, which donate to reelection campaigns, are enthusiastic about institutions, as new buildings provide new contracts. But people sentenced to those institutional halls do not heal or learn or flourish. Institutions become dumping grounds for the unwanted, as we learned a century ago when initially being built to relieve the stress experienced by the wealthy were instead stuffed with society’s unwanted — the poor, the disabled, the criminal.
Had the Willowbrook State School not been shuttered, Fred’s emotional intelligence, cloaked by peer “hitters” and a staff overwhelmed by a 3-to-50 ratio, would never have emerged. Fred went along to get along.
My brother is now living in a community group home, which promotes inclusion in society because we learn by watching and doing. Pre-pandemic, he enjoyed shopping for clothes, learning to play the drums, going to the movies and volunteering at a senior center. Post-pandemic, and recovered from COVID, he is focused on keeping his room neat, cleaning the dining table after dinner, and participating in his recently resumed Day Program Without Walls, meaning he does activities in the neighborhood with his direct service professional. Since exiting Willowbrook, the place that dulled him, he has flourished with the exhilaration of independence and choice. More and more of his peers are participating in college programs, providing them opportunities to contribute to society with entry into the world of salaries and taxes.
And yet all of their lives remain diminished by too many people who won’t accept that living differently is natural. Living differently is not a tragedy; it means seeking what all people want, as attributed to Sigmund Freud: work and love.
Today, Mom and Dad are dead, and for 23 years I have been my 68-year-old brother’s guardian. Pre-pandemic, we often hung out in front of his residence, attended a ball game or spent the weekend at my house. We are becoming used to the reality that we can soon resume these activities. In the meantime, we’ve been in touch via FaceTime or plain old telephone or brief visits outside. Most of the big brother talks are “you have to have that tooth taken out” or “you can’t tell every girl you love her.” But on a pre-pandemic afternoon, Fred posed one of his conceptual questions. He and I were sitting together on a park bench reminiscent of the one we shared in the projects, watching a pick-up game of basketball. He looked at me and asked, “Do all people die?”
“Yes,” I said, uncertain why this topic. Maybe it was a result of the misty, grey weather. “Everyone dies,” I added. His eyes, framed by black, rectangular eyeglasses, focused on me. “What do you think happens when we die?” I asked.
He placed his left hand under his droopy left eye and drew his fingers down his cheek. Sign-language instruction had begun long ago to accommodate his difficulty with shaping sounds.