Miracle Boy Grows Up (23 page)

A few weeks later he calls. My telethon essay reminds him of one of his other patients, he says—the one he’d mentioned wanting to introduce me to. Who turns out to be Evan Kemp, the Washington bigwig who’d written that groundbreaking anti-telethon op-ed in the
New York Times
more than a decade before. Kemp is now chairman of the US Equal Employment Opportunity Commission. He flies to LA periodically just to see Dr. Engel.

And this becomes the primary payoff of my visit to Dr. Engel. For in 1993, a little more than a year later, when Bill Clinton becomes president, Kemp will be out of a job. So he’ll invest his personal fortune in launching a communications company about and for people with disabilities. Among other enterprises, his company will publish a monthly newspaper called
One Step Ahead
, and I’ll be named its senior editor. I’ll be put on retainer for half my time—spent mostly writing. My first regular paycheck. My first official employment contract and job title. But that’s still a few years in the future.

First, I have to realign my life around my weakened (or possibly
weakening
) hands. Plan ahead, mourn the losses, and move on—that’s what Barbara had said. Not that my hands ever did so much, but now I need extra help with everyday tasks. Such as eating. I’ve always had to be positioned just so to feed myself, but the “just so” position has become impossibly particular and fragile.

“Right elbow forward just a smidge . . . oh, too much . . . back a little …”

Some days I can’t get it right at all.

It’s not as if debility happens all at once. More and more it becomes simpler for ML to feed me dinner. It saves time, effort. Especially if I want to expand my diet beyond chicken nuggets—that is, beyond food that’s easy to hold and stick in my mouth. If I want to try sushi, say, or sip soup, a greater degree of assistance is required.

At lunch, with Jorge, I still try to fake it as much as possible. (The macho business.) But I alter what I’m eating to make the assisted self-feeding go more smoothly. A slice of toast with a piece of cheese melted on it is fairly effortless to balance and shove in (whereas soft, untoasted bread collapses on itself). A cup of yogurt is easier to suck through a straw than eat by spoon, provided you’ve poured a dash of milk in. (I’d been drinking through straws since college, though I don’t remember exactly when or why I give up lifting and tipping cups.)

Signs of my new weakness creep in elsewhere, too, like vermin. I begin allowing Jorge to brush my hair—telling him how I want it, rather than having him hand me the brush and support my arm aloft. Is it obvious, my “new look”?

He’s not a stylist, and it’s hard to explain brushstrokes—”back and right at a diagonal, toward my right ear …”

In high school I could spend hours primping at the mirror unassisted. Yes, often completely unassisted back then. Perhaps I’d been losing strength all along . . . incrementally, imperceptibly. If I ever thought about this, I told myself my arms had merely grown heavier over the years—that’s why I sometimes needed more help than I used to. Plus I’m less interested in primping now, don’t need to work at it.

One weekend I receive a small package from Dad. He’s transferred our old home movies from Super Eight to VHS cassette. He’s titled it, “Alec & Ben: The Early Years.”

Watching the silent images, I’m struck by the changes in my young body. As a baby I could crawl a little, even hold up my head. As a toddler I’m already concentration-camp thin, my movements awkward, tentative. Alec, by contrast, hogs the picture; he’s always dancing, clapping his hands, showing his ability to be active, performing for the camera. Later still, when I’m maybe nine years old, I’m fatter and almost completely immobile from the neck down. I don’t realize it at the time, I can see. But someone is always holding me, moving my arms. At a birthday party—a game of hot potato— I’m positioned in a circle with friends in our old living room, and the girl on my left puts the potato into my lap, where my hands are waiting, and then the boy on my right picks it up from there. I might think I’m passing it along, but in fact I’m completely passive.

Talking about this afterward, ML doesn’t let me kid myself. I’d been almost thinking my new weakness was no biggie because I’d always been more debilitated than I knew or admitted. She says, almost apologetically, “I do miss your touch, your gentle caresses.”

She’s not characteristically one to express sorrow, disappointment, or need. She’s a coper. She muddles through. She’d sooner ask what I want to do—and derive pleasure from doing that—than express a desire of her own. So I’m pleased she’s being frank, but still her words sting.

“We just have to adapt,” I say after a beat, unable to resist the find-a-solution orientation of my gender, or my upbringing. It’s a glib response, the kind I’m preprogrammed for as part of my lifelong survival strategy. I do realize I’m hurt and scared, but do I realize it loud and clear enough to say so?

Yet even as the upwardly mobile, Harvard-educated man is evaporating— replaced by the severely disabled cripple—somehow I can’t give up. You mourn and move on. It’s a different direction but not a dead end. I’ll have to adapt. And on some dim level there’s a glimmer that signals maybe I’ll be better off. Maybe trying to fit in with the Harvard-yuppie ideal was unworkable and unrealistic.

Cripples are nothing if not full of creative solutions. I search for mine, for the best solutions to my current conundrums—not medical cures, mind you, on which I’ve long since given up. And which, at best, seem a long shot and, moreover, completely out of my control. Instead, I investigate everything from sex toys to revitalize our marital intimacy (did you know there’s a whole catalog of sexual gear designed for the disabled?) to mechanical wheelchair attachments that might allow me greater arm movement.

I also search for intellectual comfort, for a solution to what psychologists might call my cognitive dissonance. And I find it, when I realize my increased limitations are, in part, a function of aging. Everybody ages. Everybody goes through diminished capacity as they grow older. So I make up a narrative I can live with: I may not be all I was when ML met me, say, but who is? To put it bluntly, she’s aged, too. (Only later will I come to understand how much that very fact is simultaneously preying on ML’s mind.)

***

I
n my search for the latest “adaptive” gear, as it’s called, I attend the Abilities Expo. It’s an annual tradeshow for the disability market—vans, high-tech wheelchairs that can stand you upright or climb stairs, telephone devices for the hearing impaired, fashionable attire for the seated or amputees, publications, benefits advocacy, and even a self-defense workshop for those with limited movement.

ML and I don’t buy anything, but we collect a lot of flyers and ads. If we ever build our dream house, we now know where to acquire a bathtub with a watertight door for easy access, and kitchen cabinets that move up and down with the push of a button.

The Abilities Expo is just one of the places that make me feel good about my disability—where my so-called physical liabilities become assets. I become a volunteer board member at my local independent-living center, too, where I help with publications, do some fundraising, and participate in (and sometimes lead) discussion groups.

At one group presentation, in the Center’s beige-on-beige community room, Paul Longmore—the disability historian—is explaining his disability-rights perspective on the right-to-die. He’s against it, I know, but I’m curious because I thought disability rights was all about choice and self-determination.

“Question,” I bark, after his presentation, because I can’t raise my hand (I’m not the only one in the room who can’t, either). “What if I’m really depressed? Say, my wife has left me, my brother’s died in a horrible car accident, I’ve lost all my money and I have no job. I want to end it all but physically can’t pull the trigger or give myself pills. Shouldn’t I have the right to ask my attendant to help me commit suicide, without getting him in trouble?”

A silence echoes throughout the space. I feel like I’ve won a game of Stump the Expert. Then my friend Barbara, who’s sitting beside Paul, trumpets, “That’s different. I’ll explain to you later, Ben.”

It isn’t the first time I’ve sensed the disability agenda to be somewhat rigid.

Once the crowd’s dispersed, Barbara brings her chair close to mine. She says that, to the outside world, suicide could seem a rational choice for someone like her or me. After all, our shared diagnosis
is
terminal in many cases. “Anybody else contemplating suicide would receive intervention, because they’re assumed to be depressed and treatable. But you and me . . . ? Society is too quick to allow cripples to off themselves,” she says.

In fact, society sometimes seems to encourage disabled people to get out of the way, stop being a burden or stop using up scarce resources, she goes on. It can push disabled people to the margins, where they naturally become depressed. And instead of identifying their depression as treatable—instead of creating opportunities that make their lives worth living—society (she calls it “the majority culture”) wants to push for the right to die before it’s established the right to live.

“You know about Jack Kevorkian, right?” she asks. “How he takes advantage of newly diagnosed people to feed his own sick death wish.”

It’s a perspective I’d never garnered before, and I take it to heart. A few years later I’ll try explaining it to the local chapter of the Hemlock Society, after the chapter head hears me give testimony at a state hearing on a proposed assisted-suicide bill, and invites me to address his clan. It’s probably in vain, but I’ll be paid fifty dollars for my troubles. One stalwart—a wiry, buzz-cut man in a gray cardigan, who opts to orate from a standing position—will reinforce my point by admitting the group advocates legalizing suicide for the terminally ill only as “a first step, because it’s more palatable to the American public.” What this crowd is really after, he concedes, is “a dignified death for everybody who wants it.”

“That
I could support,” I say. “At least it’s not discriminatory.” I’ve become so comfortable with this subject—by then I’ve published another, related op-ed in the LA
Times
and am a card-carrying, T-shirt-owning member of Not Dead Yet—that I find myself waxing philosophic. “Don’t you see that if the life of someone with a severe diagnosis is held more cheaply than someone else’s, it has the effect of diminishing
all
people with disabilities? And if we’re devalued any further, more of us
will give
up!”

Around the same time, I’m asked to join a workshop at LA’s Mark Taper Forum to develop new theater pieces that advance the budding notions of Disability Culture and Disability Pride. For a month of Saturdays I brainstorm with other writers with disabilities—poets, essayists, playwrights, most in wheelchairs. We discuss Randolph Bourne, the early-twentieth-century intellectual who struggled against prejudice because of his twisted spine. We discuss a Depression-era protest group called the League of the Physically Handicapped, who objected to unfair treatment from the WPA. And, of course, we consider FDR himself, and his need to manipulate public perceptions of his disability.

I contribute a monologue about my experiences as an MDA poster child—which I’m later gratified to see performed on stage along with other consciousness-raising skits.

I also get up to speed on disability portrayals in movies and on TV. I’m asked to help pick the year’s best for the Media Access Awards. I spend a Saturday afternoon in a hotel conference room in Universal City viewing clips—where I form a warm friendship with Robert David Hall, the disabled actor soon to enjoy success as a regular on
CSI
.

But separately—unconnected with the Media Access Awards—I part with the monolith of disability-rights opinion over the movie
My Left Foot
. A fine bit of filmmaking, to be sure, but I’m uncomfortable with its heavy-handed portrayal of disability and embarrass myself in a meeting at the independent-living center to discuss it. Someone declares the flick a marvel, the first true-to-life story from a disability perspective, which has become the sort of official party line. “Well, not
all
disabled people agree about that,” I say for no particular reason except to assert my individuality.

A minor point of disagreement, perhaps, it will mark the beginning of my disillusionment with the movement.

***

S
eparately, my friend Barbara recommends a counselor in California’s vocational-rehabilitation office. Heeding her advice—she speaks in her small voice with such authority!—I meet the advisor in his tiny office . . . a slight, intense man with unruly bushels of black-gray hair . . . and explain that I want Dragon Dictate.

I had seen this awe-inspiring device demonstrated a few years earlier in a laboratory at the California State University in Northridge. But you had to speak excruciatingly slowly into a special microphone—pausing. After. Every. Word. It would translate the sound into computer text, but was still utterly impractical. The thing filled a small room and cost about ten thousand dollars (the computer that worked with it went for another ten thousand).

By the time I’m requesting the state’s financial aid to buy one, it’s come down to four-thousand and can be installed on most regular PCs. “I’ll buy the computer,” I propose, “if the state can buy the software. It’s necessary for my work.”

In those days, California still has funds for this kind of investment. So within a few months a technician comes to my apartment to install Dragon Dictate and offer quick training. Today, of course, you can buy the latest version for about a hundred bucks—with built-in training. And it’s geometrically faster and more accurate. Back then, though, for me at least, at nearly thirty, the advent of voice-recognition computing is nothing short of miraculous. Finally, an answer to how I’d interact with a keyboard with sufficient rapidity (as at least one would-be employer had inquired)!

It proves the right tool for the job, though not the paid kind. In two months I write a three-hundred-page novel. It’s my second, actually; the first one—an embarrassing Bildungsroman about how a disabled young man’s physical dependency complicates his struggle for autonomous adulthood, titled
Learning To Crawl
, after the Pretenders album—took five years and a hired typist to complete. The new one, a Hemingway-esque melodrama about a yuppie couple considering parenthood, called
The Baby Chase
, contains no mention of disability—in a cynical, failed attempt to boost its chances of publication. (Both manuscripts remain in dusty boxes on my shelf.)