An Unanticipated Love

In the article, Fred was referred to as the love of Michele’s life.

I never thought that my younger brother Fred, who sports permanently crooked eyeglasses, speaks with difficult to understand sounds and requires assistance with daily living, would be involved with a significant other: a partner, someone to relieve his not quietly fitting into this world.
In 1957, Mom and Dad authorized New York State to look after Fred at the age of four. He is now 57. He lived in his first institution, the Willowbrook State School for the Mentally Retarded, for sixteen years before it was shut down for ignoring children who were slamming their heads into walls or sitting in their own feces. After a journey through smaller New York City institutions, Fred arrived at a group home. Fred and I became mere acquaintances after he “went away.” Our parents were his connection to the typical world. Now, with Dad dead ten years, and Mom having just died, I gained guardianship and had the opportunity to learn about him, his world, and most importantly, how to be a brother.
Because of Fred’s charm, people refer to him as “a real ladies man.” During a big brother moment at one of his kidney dialysis sessions, I told him he couldn’t flirt with everyone. In words that had never been so clear, he said, “I like Michele best.”
“Would you like me to meet her?” I asked.
“Yes,” he said, his features softening.
Although Michele and Fred lived near each other, they had to be assisted to meet outside of work. They had had their first date at a diner lunch, chaperoned by Michele’s older sister. Walking down the street behind them, she took a picture of the two holding hands.
When Michele’s name was mentioned, Fred smiled. When he saw her picture, he kissed her image.
Two months later, Fred introduced his family to Michele at the workshop where he and Michele created paintings reminiscent of Picasso, Mondrian, and Henry Moore, and where they volunteered as gardeners in a local churchyard and as bed makers for a neighborhood animal shelter. It was a meeting that I had never anticipated.
“I brought you a gift,” I said to Michele, in a conference room where we would eat home-prepared food. I handed her a package from the Body Shop. “You can open it later.”
“Thank you,” she said, daintily taking the purple-ribboned, transparent plastic sack. Her closely cropped, dark brown hair framed upward slanting, lively eyes that revealed intellect… spunk… curiosity.
“You’re very brave to meet a stranger,” I said.
“I like to meet people,” she said, her speech, clearer than Fred’s, showing mild to moderate Down Syndrome.
“Where do you live?”
“With my sister and brother-in-law.”
Her dad was dead and her mom had just entered a nursing home because of Alzheimer’s; she was excited about the possibility of moving to a group home. She also said she was younger than Fred, but wouldn’t say by how much.
“I’m fat,” said Michele.
“Who told you that?” I said, newly alert to discrimination.
“My nurse… I’m on a diet,” she said, referring to her cut-up vegetables. I was unaware that obesity was a problem for people with her disability. Fred ate a lot, all the time, but was small in stature.
Weeks earlier, I had asked Fred, “Do you think about girls?”
“Yeah,” he said.
“Do you think about Michele?”
No answer. A private matter. Institutionally-raised people learn that to survive they need to be docile. Had he been withholding?
Michele was not. She said, “Fred asked me to marry him.”
Surprised, I said to Fred, “Did you ask Michele to marry you?”
“No,” he said.
“Wait a minute, wait a minute,” I said, and the two of them began laughing. “Did you ask her to marry you?”
“Yes,” said Fred.
“He got down on one knee,” Michele added.
Where did he learn to get on one knee? It was something I had done just four years earlier, but I hadn’t told him the process, nor had I invited him to my wedding—still disconnected from my brother and still unaware of the importance of including him in events, I justified the decision with Mom’s being on anti-depression medication and my brother therefore needing a counselor for the required overnight stay. People isolated by their disabilities gained cultural and political knowledge from television. In addition to Fred’s counselors’ probable joking with him about marriage etiquette, he had obviously watched a lot of TV.
“I’m waiting for a ring,” said Michele.
I knew that Fred’s agency housed couples in its group homes, each person having his own room. I liked the idea of a special other for Fred, someone besides me to protect him.
So what about sex? What did Michele’s family feel about sex? What did Fred feel about sex? My brother had received instructions on the use of a condom. The three men and three women group home residents watched as their supervisor rolled one onto a plastic penis. Before further instruction would be offered, he was required to ask. “Sexual consent,” it’s called. But how does a person know if he wants something if he is unaware it exists? Or does nature simply direct? Or does it only take one knowing partner? I later arranged for Fred to meet with a social worker specializing in this topic. She concluded that Fred wasn’t interested. He sometimes kissed Michele, but as the snapshot taken by Michele’s sister, now on my desk, shows, he really likes holding hands.
“Can I take a picture?” I asked Fred and Michele.
Fred immediately grinned, a person always ready for the camera. Michele moved her chair closer to Fred. Fred raised his arms, staring directly into the lens. Michele glanced at the table, looked away. Shyly peeked at me. “Don’t smile,” I said to Michele. Her mouth curved up revealing teeth as she giggled, looking first at the ceiling, then at me. Snap. “Okay, one more,” I said. Michele looked down, then at Fred. Fred looked at her. She reached out, took his hand. The air in the room stilled, the street sounds ceased, maybe even the minute hand on the wall clock stopped. Peace descended onto the three of us.

A year later, Michele, Fred and I returned to the diner where they’d had had their first date. Michele’s sister and I had been sharing stories of the developing relationship—lots of holding hands. We never took the ring request seriously. “It’s the family joke,” said Michele’s sister. My failure was not discussing the ring with Fred—did he understand its significance? My other failure was that up until then, I had accepted professional assessment that Fred was as not as able as Michele, so he could not be considered for the same residence as she. I didn’t yet know that all people can learn—that they just need teachers who can teach. But when Fred asked to learn to read and write and the work program supervisor said, “We don’t bother when they reach that age,” I understood Eunice Kennedy Shriver’s statement that “sometimes people get lost in the system set-up to serve them.” I had been reading the history of disabilities, including the fight to close places like Willowbrook: the basis for deinstitutionalization, spurred by Scandinavia, was that all people have goals, desires, and the ability to choose. So when Fred began refusing to shave, shower and cut his hair, I asked him, “Are you happy where you live?”
“It’s boring there.”
“You can live in a more interesting house. But you have to show you can take care of yourself.”
Motioning with his hands, he spoke the most eloquently I’d ever heard him. “I wash the table, I clean my room, I put my clothes away.”
Stunned, I said, “Do you want to move?”
Fred looked at me.
“You can move to Manhattan. We can see each other more often. You can live with more able people. But you’ll have to leave your friends.”
Change is difficult for people with disabilities, yet Fred immediately said, “I gotta get outa there.”
The residence supervisor lectured me: “He’s been with the same people for twenty years. His not shaving is his choice. Think about what’s best for your brother, not for you!” And she reportedly said to Fred, “You don’t really want to move, right?” Much later, Fred told me, “She pushes me around.”
When she began discussing meds for his behavior, I knew my brother needed freedom from people who had given up on him, who no longer “saw” him.
And I needed to prepare Michele for change.
“Fred will be moving to Manhattan,” I said.
“When?” she asked, poised above her cup of tea and the lemon meringue pie she loved. The diet had been difficult to endure.
“Not right away,” I said, unhappy I was jeopardizing an important relationship.
“We want to live closer together so that we can visit more often…. We’ll arrange for the two of you to see each other.”
While I paid our bill, Michele presented us to the middle-aged woman behind the cash register. With elaborate arm motions, perhaps practiced at the workshop, she said, “I am Michele. This is Allan. And this is my boyfriend, Fred.”
Two months later, Michele’s world flourished. Moving successfully into a group home a bus ride away from Fred yielded myriad activities. Phone tag barely kept the two of them together during the ten months before Fred received a cadaver kidney, releasing him from his three-time-a-week three-hour dialysis sessions.
Six months later, Fred moved to a Manhattan group home and also began working at a new workshop. Being seen afresh by counselors, their higher expectations helped Fred shed his label of “severely” disabled.
Michele called Fred at his new residence regularly. Sent cards on holidays or just to say hello.
Fred’s residence staff fashioned a private dining area for Fred and Michele to share a dinner.
“Did you speak with Michele?” I’d often ask Fred during our phone calls and frequent visits.
“Yes” became less common than “no.” Over a period of six months, Fred ceased initiating calls or responding to Michele’s frequent messages.
“She bothers me,” he said.
And then her calls stopped. Michele’s sister and I also lost touch… until she called five years later. “I just wanted you to know that Fred is mentioned in a newspaper article about Michele.”
“How is she? Is she still living in Brooklyn?”
“She’s in Brooklyn, but in a different home.”
It was located near my workplace. “I can visit,” I said.
“Yes, but she might not recognize you. She’s become unresponsive, even to me.”
I didn’t know that Alzheimer’s was common in people with Down Syndrome. In the article, Fred was referred to as the love of Michele’s life. That she had beamed whenever hearing his name… that she had spoken of him to anyone who would listen… that he had asked her to marry… that she was still waiting for a ring.

All people can lose opportunities, be distracted by life, fall out of love.
And many can’t replace that love.
I recently asked Fred, who now plays the keyboard at a weekly music group, volunteers to deliver meals to the elderly, is learning letters with computer software, and earns money doing industrial piecework, “Do you have a new girlfriend?”
And simply, unaffectedly, maybe unaware of why, he said, “No.”


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