When my nephew was small, the family lived far away, so I didn’t see him very often. Every time I did see him, therefore, I had to get reacquainted. Young children are shy and it does you no good to cozy up during a short visit; on the next visit you’ll have to start again from scratch.
So there I was trying to warm up to the child, showing interest in his activities, doing goofy things and so forth, and the look on his face plainly said “get this creep away from me!” Obviously a new tack was needed.
“Mitchell,” I ventured, “let me tell you about my friends.”
The boy looked like he might put up with it.
"I have one friend named Carolyn who likes to make herself a cold drink when she gets home from work. Do you like cold drinks? ……My friend goes to the refrigerator and pours a glass half-full with milk. Do you know what she pours for the other half?” The boy looked up.
“Ranch salad dressing! Does that sound like a drink you would like?” The lad looked wondrous, as if I was from Mars, and shook his head emphatically. I had his attention.
Carolyn loved ranch dressing and would have drunk it all day if we had let her. We didn’t, of course. She’d make raids to the kitchen and grab the two ingredients. Sometimes she’d get so far as to emerge one jug in each hand, but we’d always intercept and send her off, to howls of protest.
“I also have a friend named Jackie,” I said. “Do you know what she eats?" The boy shook his head. “Anything,” I answered. “Even if it’s on the floor. Even if it’s not food. She’ll grab it quick and put it in her mouth.” The boy looked at me as if I was from Venus.
She’d also eat paper clips and screws and tacks, so you had to follow her around and watch her very closely. If she spied some….say, dryer lint….she‘d lunge….it was unbelievable how strong she was at such times, so you were wise to clear the area beforehand. It’s a condition known as Pica….who would have thought there’d be a name for it?
She’d also talk non-stop, but only about a dozen phrases said again and again and again. You couldn’t help but like her, and you couldn’t help but regard her as a mischievous child, same as Carolyn. Always active, she used to wander around the house constantly, and staff would have to follow her, lest she ingest carpet, knickknacks, paper, what-have-you, like a giant vacuum cleaner. But she fell ill and spent several months in a coma. (something she ate?) In the hospital, I’m told, they didn’t move her too often and the weight of the bedcovering pressed down on her feet till she could no longer straighen them. Discipline meted out to lots of people, of course, but it didn't do her any good, did it? Thereafter in a wheelchair, she'd talk constantly of going to work and would almost shake her chair apart in excitement when the van showed up. “Go to work,“ she’d repeat, banging fists together up and down, like hammer on anvil……the sign language gesture for “work.“ At work, they told me, she’d speak of nothing but going home.
Then there was Christopher. Christopher couldn’t walk either, or talk, but if you set him on the floor he could hop about and cover surprising ground. I got in the habit of reading stories to Christopher, shamelessly overacting the characters when I saw how much he liked it. He’d rock back and forth and positively howl with delight. You could also give commentary on the TV, as over-the-top sportscaster, for instance, and get the same enthused result. Other times, in the early morning we'd roll out onto the deck and listen to the birds.
The second part of Christopher’s life has been much more pleasant than the first, thanks to the Willowbrook Decree. As a kid, Christopher was placed at the Willowbrook State School on Staten Island. Places like this were once hailed as panacea for the developmentally disabled. Not only would they live in happy bucolic surroundings and get plenty of care geared to their needs, but they would be far away. But in 1972, Geraldo Rivera snuck into the school with hidden camera and detailed shocking conditions: children packed in like cattle, cowering naked and filthy. Feces on the walls. Urine all over. Frequent and violent deaths. The place was, as Robert Kennedy had declared a few years before, “not fit for even animals to live in.” Geraldo’s on-air reporting (which earned him a Peabody Award) jarred consciences. Investigators investigated, hearings were heard, speeches were spoken, and groundbreaking legislation was legislated. All 5000+ residents were dispersed and relocated in small communities. They also received and are still receiving life-long oversight to ensure personal wellbeing.
The present trend to place individuals with developmental disabilities in community residences, the birth and spread of day programs and special education in New York, then in other states, then in other countries, can all be traced, at least in part, to the Willowbrook hearings. So Christopher, former member of the Willowbrook class, is a hero, a pioneer of sorts, though I doubt he is aware of it.
My nephew enjoyed hearing about my friends and we became chums again. And in calling them friends, I really don’t misspeak. They became friends. I might pull up a chair in Doug‘s room, for instance, and watch some TV with him. This was a challenge, since it was his set, he had the remote, and he’d flip through channels as if spinning a roulette wheel. Still, considering what‘s on these days, it was probably just as well.
Sometimes when I assisted these folks in their daily routines, I would imagine seeing then again in the new system, with sound body and mind. But for dumb luck, life might easily have turned out differently, with them assisting me. In many ways, working in the disabled home was the most enjoyable job I’ve ever had. And it changed my overall conduct. Now, if I am invited to a party or someplace, I will put my hands in my pockets, murmur some niceties to whomever I must, and then go search for some mentally retarded persons to hang out with.
All names have been changed of course, even that of the nephew. Only my own, Sheepandgoats, is rendered accurately.
update available here.