The first duty of love is to listen.
— Paul Tillich
Love is no assignment for cowards.
In part 1 of this piece I described the atrocities at Willowbrook State School as the cause for changes in the delivery of mental health services in the U.S. Elsewhere I have described some of the changes in state and federal law surrounding terminology used to describe disabled individuals, and a comparison between the U.S. and the delivery of mental health services in New Zealand. But these descriptions are only the macro version of the movement. There is another side to this story, a personal side.
In preparation for a forthcoming book I arranged to talk to a very unique couple. On December 15th, 2010 I got to meet two extraordinary people, Michael and Amy (not their real names). They live in a supported residential program with ancillary services. They have a wonderful love story. It is filled with the challenges of circumstance and desire. Amy is nearly 30 years older than Michael: she is 92, he is 63. But it isn’t their age differences that make their story unique.
The couple has been married 30 years, but together for 40. I had a chance to interview them for about an hour at the New York City courtesy of the YAI / National Institute for People with Disabilities. A dear friend and colleague, Bobra Fyne, MSW, arranged the interview. It took about two months to set up. The meeting took place in front of a small group of staff and was videotaped by Jerry Weinstock, of YAI/NIPD, for their archives. Amy had on a lovely black and red dress with very tasteful jewelry. Michael was dressed in slightly mismatched shirt and pants, with a good quality jacket that clashed with both. Both were well groomed, in good spirits, and very excited for the interview. It would be hard not to notice that the color choices of Michael’s shirt and pants could have been better, but his exuberance and energy more than compensated.
For the most part Michael spoke for the couple. They held hands and slowly made their way into the interview room. Michael guided Amy and helped her get situated in a chair. He sat down next to her, and both of them smiled at Bobra and me. Two aides were nearby for assistance if needed.
As we began to talk I thanked them both for making the trip out from Long Island to come talk to us. They were pleased to have come, and Michael explained that Amy now needed a little more time to prepare herself for travel. They smiled and held each other’s hands as they began talking about their lives.
They’d recently returned from a vacation in Boston, and chatted about the sights they’d seen, and the food at the restaurants. They talked about what we all talk about when we come back from a vacation: the vistas, the travel complications, and the new foods. All as normal as can be.
Then they gave a small rendition of their physical maladies, their aches and pains, and the fact that they can’t always do the things they used to do. Michael shrugged and smiled. “But what else are you going to do?” he said. Chatting with an aging couple about a vacation and citing a list of ailments shouldn’t be cause for a videotaped interview. But this was no ordinary couple.
Willowbrook was the largest and most infamous institution of its kind in America. With 43 buildings the “school” housed nearly 6,000 residents — 65 percent over capacity. More than 75 percent of the residents had IQs below 50, and most had been residents for more than 20 years. Just to give you some understanding of the jeopardy the inmates were in: In an eight-month period in 1972, there were over 1,300 incidents of assaults, fights or injuries reported.
That is not a misprint: 1,300 incidents in an eight-month period.
Willowbrook has been referred to as a snake pit, as purgatory, or as hell on earth. It is mentioned in the same breath as the Holocaust, and used as an example of the psychology of evil.
Michael and Amy met as inmates in Willowbrook. They are the only couple from the institution ever to have met and married.
Beneath the unspeakable horrors, inhumane and unsafe conditions, and the traumatized lives, was an incredible resilience of spirit and of mind. My original intent was to have them talk about their experiences in Willowbrook and of their transcendence. I asked them how they met.
“I was over on the men’s side; she was over on the women’s side,” began Michael. “There was a staff member that liked me, and he brought her over to me.”
“Did you like Michael right away?” Bobra then asked Amy.
“No,” she said with a slight smile.
Michael was incredulous. We all laughed. He put his hand gently on Amy’s shoulder and spoke directly to her.
“Bobra asked if you liked me right away?” he said, smiling.
Amy smiled back.
“I like you now!” she said.
Then they talked about their time in the institution.
“I was there for 16 years,” said Michael. In buildings 4 and 5, then building 10.
“Do you remember things from Willowbrook?” I inquired.
“Geraldo Rivera,” he said right away. “And then pictures of the babies in their own feces.”
“What was your time in Willowbrook like?” I asked.
“It was the worst place to be at. I didn’t like the way people were treated. There was a man that had his hands in the food. He didn’t have no gloves on. That’s not how you serve food.”
Amy was still thinking about how they met.
“I seen him when they would bring together the boys side and the girls side,” said Amy.
Bobra picked up on Amy’s comment.
“What did you notice about him?” she asked.
Amy paused and smiled at Michael and looked back at Bobra and I. With the slightest of shrugs she closed her eyes in a reverie of recall.
“He was a snappy dresser,” she said smiling.
Michael beamed. It was not lost on Bobra or I or the onlookers that Michael might be described as many things, but “snappy dresser” wouldn’t be the first thing that would come to anyone’s mind.
We then pressed Michael for confirmation.
“Is that true?” asked Bobra. “Were you a snappy dresser?”
In true New York style, complete with the hand gestures that conveyed total self-assurance, Michael turned his palms out in front of him and moved them up and down his torso to reveal his wardrobe. He didn’t utter a word, but his actions said it for him. Could there be any doubt he was a ‘snappy dresser?’
In the words of H.G. Wells, “Beauty is in the heart of the beholder.”
Michael is on the New York State self-advocacy board and has a long list of involvement in advocacy. He and Amy were part of the original transferees in the Willowbrook Consent Decree.
Toward the end of the interview I asked Michael if he had any parting words of advice for people who want to have a successful marriage. With the unconscious timing of the great comedic sensitive Art Carney, Michael slowly, deliberately and painstakingly removed a small folded paper from his pocket. The unfolding of this paper and the anticipation of its message by the gathered audience was spellbinding. It was a palpable pull of our attention. As I looked at Bobra and the staff, it was clear we all wanted Michael’s secret to be revealed. Once out of his pocket and unfolded he made known the contents.
It was a picture of Amy and Michael kissing.
He held it up for the camera, leaned over and kissed Amy duplicating the pose.
Wise advice, from two of the most resilient people I know.
Back in 1965 Senator Robert Kennedy first spoke of the need for change at Willowbrook. To paraphrase what he might say now if he could see Michael and Amy…
I think it’s just long overdue ….