Miracle Boy Grows Up (4 page)

Mom has her reasons, beyond vanity. She grew up poor because her father, Grandpa Sam, a Cincinnati defense lawyer, had such an unpleasant manner the only clients he could keep were the most desperate and destitute.

The other reasons she and Dad insist on a regular private school are, (1) they know separate isn’t equal, (2) they want the best education possible for their kids, and (3) they’re snobs and only consider the finest schools.

So I start first grade at the Walden School, on West 88th Street. It’s a regular, albeit progressive, private school with a liberal admissions policy. I mingle with kids of all colors, many on scholarships, many others from the creative elite of the Upper West Side. As the only wheelchair-riding student, I’m a pioneer of sorts. It’s not exactly wheelchair accessible—each morning Dad has to schlep me, in wheelchair, up a small flight of steps at the entry, and every afternoon Mom hauls me back down again.

One evening I overhear Mom and Dad talking in the kitchen. They are grateful for Walden. Dad says he isn’t sure about its prestige but Mom says it will be fine. Best of all, she says, Walden doesn’t see me as a typical handicapped kid. Dad agrees. It’s making an exception for me because of my intelligence and alertness, he says.

Judy, my new class teacher—a tall, slender woman with dark hair and warm eyes as expressive as a cartoon character’s—quickly makes accommodations. For example, at the end of the first week she gathers the entire class of sixteen kids in a circle and introduces me. Just me! She explains why I use a wheelchair and then says something funny:

“Would any of you like to
touch
Ben’s wheelchair?”

If they touch it, she explains, they won’t be afraid of it. She is making a kind of case study of me for her master’s thesis, it turns out, testing the concept of mainstreaming.

I’m startled to think that anyone would be afraid of my chair. Yet right away a few hands shoot up, then more. Soon I’m surrounded by grubby eager fingers. Many of these kids quickly become my new best friends. Within a day I’m appointing a trusted subset to be my first choices for wheelchair-pushing. We make a game of it—they compete to be my Chief Wheeler, and I choose the winners. “You were totally accepted by your classmates because you were so cute and so bright, just like everyone else, except you were on wheels,” recalls Judy, my teacher, four decades later.

At the end of the semester she notes on my report card that I have “leadership skills.” If so, it comes from necessity. It’s a survival skill, a form of gentle manipulation that maybe all handicapped kids learn. Taking charge. Putting people at ease.

One kid, however, isn’t so easy to figure out. On a half-cloudy November afternoon a girl named Carrie crawls across a classroom tabletop toward me, grinning. Bony and high strung, with long black hair she’s always tucking behind her ears, one of many tics, she’s a friend but not a member of my Club. I call my group of best friends a Club, a restricted club, and though it has no benefits other than wheelchair-pushing privileges, the other kids seem to like being members. “Hi, Ben!”

“Carrie . . . what’re you doing on the table?”

She inches closer. At the edge of the table she says “hi” again. Then she’s practically in my lap. She reaches out and begins unbuttoning my navy-blue corduroys and unzipping my fly—

“Carrie!” Judy yells from across the room. Carrie’s white-hot face falls like a startled soufflé as she looks up and unhands my pants. Judy marches over. “Back to your seat!”

Silently, Carrie crawls away. Judy steps closer and closes my pants. No more is said about the incident. Later, when Mom comes to pick me up, Judy tells her what happened. They talk in soft voices.

On the chill walk home along Central Park West, Mom tells me to let her and Judy know if anything like this occurs again. Some children have a hard time accepting my handicap, she says. That’s not so, I say, not in this case. Mom says she understands it was just play, but still. I say okay, but I’m lying. I don’t want to tell Mom or Judy or anyone else if it happens again. If I commented on all the odd things people do around me, I’d never shut up.

For instance, I never tell about Quentin. He’s a long-haired, pale-skinned, rangy boy with a taut, satanic grin who frightens me. It’s not merely his appearance. It’s something about the way he looks at me, or doesn’t, with his fanatical eyes. I try ignoring him. He’s one of the reasons I surround myself with a protective barrier of friends. Quentin pays us no mind, and at first I congratulate myself on a strategic victory. All goes smoothly, but only for a time.

***

T
o be nearer to Walden, we’ve moved from our second-story apartment on East 79th Street to a six-room co-op on the eighteenth floor of The Beresford, a cavernous Art Deco building on Central Park West near the Planetarium and dinosaur museum. Alec, who is eight, is against moving. He likes life to stay the same. Or maybe he just likes to argue.

Soon after moving, Mom and Dad have all the doorway thresholds removed and smoothed over, an access modification for me. This is thirty years before access modifications become codified by law. Mom and Dad and the men they hire have to figure it out on their own. Pioneers, again!

Workmen and sawdust fill the place for weeks. The light switch in the bedroom Alec and I share is lowered so I can reach it, if pushed close enough. I’ve never flipped a light on and off before. Who knew it was so simple? I flip it a hundred times that first day.

I remember our first Halloween there. Dad takes Alec and me trick-or-treating at our old apartment where we know people. As Dad pushes me from door to door and Alec, wrapped in crêpe paper like a mummy, follows alongside or leads the way, I never think about what I must look like in my Batman costume. A superhero who can’t walk? But we do notice the unnatural attention I receive at some of the apartments we accost. At the end of the night, and pretty much every Halloween, I invariably score more loot than Alec. As if candy will cure me.

Years later, I will learn of a historical connection between Halloween and disability. I will receive ample evidence of the once-common fear of deformities—the limping, hunchbacked, hook-handed, or one-eyed monsters of ancient fairytales and old horror movies. Even the word “creepy” comes from the same word as “cripple.” And when people like me weren’t feared, they were often gawked at in carnival freak shows or objectified for their noble suffering . . . like Tiny Tim, whose only role in life is to inspire and cheer up other people. Mostly what I know of that objectifying comes from the medical profession, the constant stripping and prodding and X-raying and “show me your tongue”-ing I’m subjected to, ostensibly for my own good but, in truth, primarily to educate doctors about my unusual anatomy.

At school, other logistical problems quickly emerge. I start peeing in my pants. It’s a logistical problem because I have no way of raising my hand to be excused, no way of taking myself to the bathroom. And I’m embarrassed to shout out for help.

“What if you had a different way to signal you need to go?” asks Mom.

She tells me to suggest a word or phrase that’s easy to remember— something I wouldn’t ordinarily say, which has no other meaning, and that I’ll feel comfortable calling out in public. It’s genius! And it’s lovely because it means Mom understands.

I have no choice but to get my teacher’s help in the bathroom, naturally. I don’t have the luxury of privacy. Yet this should make it less humiliating. I ponder a moment.

“How about, ’Judy, one two three’?”

Mom shares the code with my teacher, who likes the idea. I tell myself I’m Jonny Quest on an adventure, complete with a secret code. Again using fantasy to deflect discomfort.

The battle may be won, but the war isn’t over. In second grade I have bathroom troubles at school again. I’ve become too heavy for my teacher to lift onto the toilet. So one day my parents present me with a blue-green plastic jug I’m supposed to carry every day. A white canvas sack is hung on the handlebars at the back of my wheelchair. The jug fits inside, sort of. Actually, it protrudes at the top sometimes. They call it my urinal. Which doesn’t make me feel any calmer in my stomach pit.

I’m afraid kids will tease me when they see it—but I must admit it should do the trick. The portable urinal is the latest step in working out the logistics of my attending a regular school, another “reasonable accommodation” my parents devise, decades before that term becomes a point of law.

But there’s one more complication. This time, instead of a code, Mom sets it up for my new teacher to take me to the bathroom every day after lunch, whether I ask or not. At home I’m already going to the toilet on a set schedule, and it eases the burden of having to ask, so I accept.

It’s just one example of how my life at age seven has already become highly regimented. When I’m set up at the table with crayons and paper, I know I must have everything within reach, everything I’ll need for as long as possible, so I won’t have to ask busy parents for extra help. They’re kind, but can’t always be at my beck and call. Where other seven-year-olds might choose clothes for themselves and change their minds two or three times, I’m still dressed by my parents and have to select outfits they’ll accept—outfits I can stick with, too, because it’s too much trouble to change my mind. There’s no surprising my parents!

What’s more, my entire wardrobe is memorized so I can name clothes without looking in my drawers. I’m dressed in bed, before getting to my chair, and it’s impossible to see into my drawers from there.

Inevitably, a certain rigidity settles in. Spontaneity becomes a forbidden luxury, even spontaneity in peeing. My life soon feels overrun with orderliness and rationed efforts. I’m
always
required to articulate my wishes and needs, can’t just act on them. I’m forced to plan ahead. And I internalize this self-discipline with near-military precision. Disability is my boot camp. Impulsiveness is drained out of me. Without realizing, I come to depend on precedent—whatever worked before should work again—because I can’t trust in winging it.

***

I
n third grade, one of my extra special friends invites me to her apartment to play. A smart, petite girl with long, thick black hair, Joanie lives only a few blocks away. Her mom comes to escort us. Which means she’s going to push my wheelchair on the sidewalk—but first, down the school steps. Joanie’s mom doesn’t look physically strong, yet I bravely give her instructions. I can feel her hands shake as she clutches the handlebars of my wheelchair.

One step at a time.

We get almost all the way down without incident … until she slips. I fly out of her hands and bound down the hard marble stairway—
k’bump-k’bump!

I hit the bottom facedown, my chin on the lowest step, my wheelchair on top of me.

Mr. Martinez, the school’s muscular and jovial maintenance man, is there, leaning over me, trying to pull me up. It’s hard to talk with my chin pressed against the bottom step, but I know words are my strongest asset and best defense. Mom has drilled that into me over the years.
Speak up! People aren’t mind readers!

I manage to say, “Open the seat belt first.”

The only Walden staffer not called by his first name, oddly enough, Mr. Martinez bends down to make sure he understands. I can smell his sweet cologne, and I’m grateful. It’s important he understand me. If he pulls the wheelchair up without unbuckling me first, I’ll twist an ankle.

He reaches under me to unfasten the belt. Released from the chair, I slide into a slightly more comfortable position on the floor. He is then able to lift me bodily—like a groom carrying his bride over the threshold—without twisting my ankle, and carry me up the steps to a sofa in the school office. Someone else brings my chair.

The school nurse looks me over, calls Mom. Joanie and her mom stay near. I’m in no pain, but the wait for Mom seems very long.

Finally she’s there. The play date is canceled. No other harm done.

You become used to wheelchair accidents.

The next time Joanie and I get together it’s at my apartment. By now we’re considered boyfriend and girlfriend. When no one else is around, we decide to undress. So, under the pretext of needing a nap, I ask Inez, our housekeeper, to lift me out of my wheelchair and put me in bed. Once she’s gone, Joanie closes the door and I instruct her how to open my jeans. She knows how, of course, but needs encouragement. “I can’t unbutton them myself,” I explain matter-of-factly.

She insists on going first, and begins to lower her jeans and underpants. I try to look but can’t—I’m not sure what I see. Then it’s my turn. To my surprise she says no. Fearing she’s merely being bashful about helping me, I try my usual brand of reassurance. “You can do it. It won’t hurt or anything.”

I don’t think about the implications of her actually touching me. We’re just having fun, sharing. She continues to say no and I give up. Inez puts me back in my chair and we play ordinary board games. But it’s clear: I’m not going to let my handicap get in the way of my romantic life any more than I let it detour my education or anything else.

It’s a lesson I’ll carry with me long into adulthood, when it really matters.

***

I
n 1968, the Muscular Dystrophy Association of America’s Labor Day telethon is broadcast outside the New York metropolitan area for the first time. Launched in the early ’50s as an occasional four-hour fundraiser on a few New York television stations, it became a nineteen-hour star-studded TV event on Labor Day 1966, though still within tight geographical boundaries. In 1969, when I’m seven, I’m invited to be the charity’s head poster child.

We think highly of the MDAA (as it’s known then) in my household. It tells us about my spinal muscular atrophy, what to do to keep me healthy. Mom and Dad say it helps pay for Dr. Spiro, my neurologist. Someday it might find a cure so I can walk, they say.

On a fall Saturday afternoon Mom takes me to a studio downtown—a large, mostly empty windowless space. At the back, under very bright lights, a quiet girl a few years older than I am stands awkwardly with the aid of crutches. She has short, dark hair and wears a short green pinafore dress that exposes leg braces. Mom says she’s the outgoing model. I should speak to her for tips about what it’s like to be a poster child.