Miracle Boy Grows Up (7 page)

Then Mr. Snuffles returns with my brace, to which he’s affixed two straps. “Zey go here, you shee?
Shniff
...,” he chatters as he snaps the new straps around either side of my groin.

Within a few days my crotch becomes redder and rawer than my waist and armpit ever did. A few weeks later, my parents agree to remove the straps. Another torture device the medical geniuses think up gets the heave-ho, though of course I have to keep wearing the brace, pinchy and irritating as it is.

I never complain about the brace at school. Doing so might incur pity. I pretend it isn’t there, but I’m becoming ineluctably resentful of other people’s freedom of movement.

In sixth grade, when I turn eleven, Quentin threatens to push my chair down the stairs for no discernible reason. The long-haired boy who’s frightened me since first grade, he still has the beady eyes that never take me in whole. We’re alone in the hallway; I told my friend Adam to go ahead, not to be late for his class, because I’m confident someone else will come along for me. Quentin happens to be the first person who does.

“I could push you right down those steps, and you couldn’t stop me,” he says coolly, between heavy breaths. “No, really, nothing you could do, is there? If I wanted to. And I think I do—”

“You won’t,” I answer, though I believe he’s entirely capable of acting on his minatory words. “You know I’ll tell and you’ll be in deep shit.”

“I’ll say it was an accident.”

“I can make people believe me.”

“But you can’t stop me. You can’t do anything about it!”

He’s got me there. And the more he says it, the more my insides shake. Not my outsides. I won’t give him the satisfaction. “You’re not going to do it. It’d be stupid.”

It
would
be stupid. At best he’d get kicked out of school. If I got really hurt he could be put in jail. At least that’s the way I’m thinking. Can I convince him?

It becomes a staring contest. For strength, I think about Captain Kirk in “The Corbomite Maneuver.” It’s all about the bluff.

Then, just as abruptly as he appeared, Quentin turns and walks away, giggling under his breath. When he’s far enough I close my eyes and count to ten. I have enough time to calm down before a teacher shows up and pushes me to my classroom. I don’t tell her or anyone else. Don’t want to portray my fear and potential vulnerability, or incur Quentin’s retribution. Yet I feel good. I think of the Winston Churchill quote, one of many Dad cites on occasion: “Nothing in life is so exhilarating as to be shot at without result.”

All goes smoothly for a time. Then, a year later, when I’m twelve, I vent my frustrations on a good friend named Randy. Randy and I like to play
Ironside
, or at least I do. He’s always Mark because, well, he’s Black. (Guess whom I play?) On the show, Mark is the street-smart dude who drives the chief everywhere and helps him at home while attending law school. I actually like Mark better than the other supporting characters, so Randy has a position of honor. I don’t think of it as racial stereotyping. In fact, sometimes secretly I wish I
were
Black; the minority status resonates with me.

We play
Ironside
at school, and we play
Ironside
at my apartment. My building’s labyrinthine basement is a great place to let your imagination run wild. Plus, I have a new motorized wheelchair—my first. It’s too heavy to get up the school steps, but at home I love to zoom around. In my basement, Randy and I are always careful to stay clear of the housekeepers who do laundry and the maintenance workers’ office as we explore the myriad dark passages and commodious storage lockers, pretending we’re on a mystery investigation. It’s taken me a while to get an electric wheelchair. They’ve been mass-produced since 1956, when Everest and Jennings rolled the first one out of its California factories, improving upon designs putatively sketched by George Westinghouse in the late-nineteenth century and British engineers during the first World War, then perfected in the early ’50s by a Canadian inventor named George Klein, primarily for World War II vets—demonstrating the connection between war and disability progress.

The first E & J power chairs were notoriously slow, but in the early ’70s they become the vehicle of choice for active quadriplegics—brandished by Ed Roberts and his trendsetting crew in Berkeley. The only reason I didn’t have one before is Dr. Spiro feared it’d make me lazy, make me not use my arms and build strength. Now we know I can’t “build up” my muscles; they will remain the way they are no matter what I do, so he finally wrote the prescription.

The first day I got the motorized wheelchair home I chased Alec all around the apartment. I wasn’t a good driver yet and kept crashing, leaving tell-tale gray scratches on the white walls.

One afternoon at school, Randy spills paint on a picture I’m drawing. Maybe it was an accident. Maybe he had a good reason. The unforgivable point is his bravado about my defenselessness. “How are
you
going to get me?” he taunts.

I’ll make him sorry for that. I can’t fight him physically, but I have other powers. Remember? Words and sympathy are my raw tools.

I look around the classroom. Everyone’s gone to PE. I’m excused and Randy is too, to keep me company. If he resents being my companion, he never says so.

Slowly, silently, I start dumping books and papers and pencils out of my small desk. I have just enough arm strength to reach in and move things out. Gradually, one by one, I cover the entire floor within a two-food radius of where I’m sitting. Some of the papers sail even farther—which I was counting on. Randy watches in disbelief.

When the other kids and Ray, our teacher, return, I don’t have to say a word. Someone immediately notices the shambles and demands to know what happened. “Randy threw my stuff all over the floor,” I allege.

Randy stares in shocked betrayal, tears welling in his eyes. “No I didn’t.”

Our teacher doesn’t say a word. He’s in a spot. Accuse the handicapped boy or the Black boy? I feel no regret. I am . . . proud. I’ve mastered the perks of disability.

A girl in our class says, “How could Ben throw so far?” And I know I’ve won. Never mind that in trying to prove I’m not helpless I’ve actually reinforced the opposite—made people think Randy took advantage of me.

Even after Ray asks the class to help clean up, I stay mum. This new course I’m on—aggressive, spiteful—satisfies my insecurities. If Randy had gotten in big trouble, perhaps I would’ve broken. I would’ve relented. He doesn’t, which may mean our teacher suspects. Doesn’t matter. Randy’s an innocent victim of my need to flex my meager power, but I figure you have to be tough to survive in a sometimes unfriendly world.

Sure, I’m fat and wear glasses and a weird-looking back brace, and have a stupid green jug urinal sticking out of the bag on my back—but I still have inner strength. I may be easily pushed in my wheelchair, but I won’t be pushed around. So I willfully resolve to remain truculent . . . preemptively thick-skinned and bristly . . . until, in time, another discovery prompts a counter-pledge.

***

I
n 1975, when I’m in eighth grade, Congress passes the Education for All Handicapped Children Act, mandating full integration of kids like me in regular public schools. It’s historic, but if my parents are aware of it they don’t tell me—or if they do, it doesn’t register.

That same year California Governor Jerry Brown names Berkeley’s Ed Roberts to be director of the sunshine state’s Rehabilitation Department, the first time a former claimant of government largesse has risen to such a position. I say “claimant,” and not “recipient,” for a good reason. As a student, Roberts was turned down for educational/vocational assistance because he was deemed unemployable. Now he’ll forever alter the criteria for evaluating the potential of people with disabilities.

I haven’t heard of Ed Roberts yet, but Mom does tell me about a man in Ireland who is so paralyzed he paints with his left foot. She says he’s written a book about it. I’m not looking for role models of people with disabilities, and I can’t understand why she tells me these things. She’s still concerned that I might need some emotional bolstering due to being handicapped, even though I’ve already done so much, gotten so far, and scarcely ever felt sorry for myself.

Shortly after my bar mitzvah—celebrated with a buffet of my favorite foods, in the ballroom of the reform temple two-and-a-half blocks from our apartment—Mom says, “It’s time you had a man’s help.”

Help with what? I wonder. And why a man? Ah, she means instead of the Caribbean women we like to make so much fun of. I’m embarrassed. Does she think there’s something . . . inappropriate . . . going on with them? “For your privacy,” she clarifies.

Privacy isn’t something I’m especially concerned about. I’ve been naked in front of almost every adult I’ve ever known!

The first man we hire is a counselor at a day camp I attend the next summer. It’s a handicapped camp on Long Island, which I’ve consented to since it’s the only kind of camp that’ll take me and I’m tired of being bored every summer while Alec goes off to sleepaway camp in the woods of New England. It’s my first protracted experience among . . .
them
.

I try not to stare at how some sit in their wheelchairs stooped over or twisted sideways—or how their legs splay open on either side when they lie supine to get changed into bathing suits. I hope to God I don’t look
that
handicapped, though I fear my prayer is hopeless. At fourteen, I regard my disability chiefly as a matter of vanity.

Austin is the best and most popular counselor, able to lift any one of us easily and swing us around for fun. He always shares his pretzels at lunch, tells us he won’t go to Vietnam if drafted because he’s adamantly nonviolent, and claims to rush home every afternoon to rescue the bugs in his family’s inflatable pool. I want to move in with him and his family. When Mom asks if there are any counselors I’d like to have as my helper in August, it’s an easy choice.

We have a small house on Fire Island. Austin stays in the guest bedroom. Once I overhear Mom talking with her friends; all the women have a crush on him.

In the fall Austin attends Yeshiva University. Soon he introduces me to Orthodox Judaism. It’s alien, so different from the Reform version I’ve known, but I love the structure, the myriad rules (and loopholes!) for every aspect of life. No need to chart your own course. And I think this may be the answer to my confusion and self-doubt—to the bewilderment brought on by divorcing parents, budding sexuality, and being grievously disabled in an overachiever milieu. “I want to keep kosher,” I declare to Mom one day.

She’s harried, post-separation. She’s been looking for work, getting only short stints here and there. She’s furious at Dad for abandoning her, for finding new love when she can’t, or won’t, and for looking so good in his forties.
Why do men get better looking while woman fall apart?
, I’ve heard her ask no one in particular. I don’t realize my turning kosher will make more work for her, cost more money. But she knows exactly what’s involved, even though she hasn’t kept kosher since Grandpa Sam died, when I was about five.

Needless to say, Mom is less than thrilled. Yet she goes along. As a compromise, she buys me a glass plate. We’re pretty sure glass is nonporous and so can be used for both meat and dairy (though not, of course, at the same time or within three to six hours of each other).

I thrive on the rational authority of the six-hundred-and-thirteen commandments. I get Alec to go along, to a degree. On Friday afternoons, before Shabbat, he pre-tears toilet paper and loosens the refrigerator lightbulb so it doesn’t turn on when opened. I can’t actually tear my own toilet paper or open the refrigerator, but it wouldn’t be right to have someone else break halachic code for me! We set timers to turn lights and the TV on and off during Shabbat—there’s a new Saturday morning
Star Trek
cartoon I can’t miss—and give up Chips Ahoy cookies for pareve Stella D’oros. I stop driving my electric wheelchair on Saturdays and, though I’m rarely up for going to synagogue, I start wearing tzitzit and a yarmulke everywhere.

“What is this crap?” is Dad’s reaction. He smiles after he says it, but Dad is a modern, intellectual Jew who prides himself on getting away from “all that atavistic, Old World nonsense.” You should hear him on the Hasidim! “Do they want to go back to the Dark Ages?” Barbara, who’s Catholic, has a hard time with the minutiae but she’s had her own bouts of religious zealotry and is less antagonistic. In college (which was only about five years ago) she even contemplated becoming a nun.

To my parents, it may be only an “adolescent phase,” but for me Orthodoxy’s rigidity is directly linked to my own strict life. I derive strength from the clear-cut, unwavering severity, which I’m accustomed to from my disability. Planning and intellect over emotional whim and spontaneity. Brain over body.

One glorious release from this rigidity, so to speak, is masturbation. Whether kosher or not, I indulge nightly. I have zero privacy but try to keep it secret. One midsummer weekend I go with Dad and Barbara to the Jersey Shore, where I eat nothing but fried fillet of sole—fish because I believe it fits kashruth, and fried sole because that’s the only fish dish I can stand. While pushing my manual wheelchair on a quiet path, having left Barbara behind at the motel pool, Dad says, “Tell me, Ben, are you able to . . . reach yourself?”

It takes a moment to understand. I resist the giggles. Really, I’m delighted. So nobody’s caught on?

Here’s how I’ve been keeping my nightly ejaculations private and undetected: First, I ask to sleep on my back, though I can’t actually sleep that way. I ask to have my hands laid flat on either thigh. I say it’s more comfortable that way. Then I say goodnight and the light’s turned out, the door partially closed. I have just enough hand strength to do what I need . . . After, I wait for the spew to dry before calling out to roll over.

“Yes. No problem there,” I’m saying as Dad rounds a turn. The Jersey Shore is a sexy place. Lots of skin, and a certain casual attitude. My imagination gets a little carried away. “Now, Dad,” I say, “can I ask
you
something?”