Miracle Boy Grows Up (20 page)

A similar effect will be found in SMA survivors, too—like me.

My self-esteem plummets as reality seems to close in around me. Anywhere ML and I go, at any time (even to this day), we can be side-winded by a stranger’s inquisitiveness:
Is he your brother? Is she your nurse? Is he your son?
(Ouch!) Back on the multicolored streets of New York, I was one of many characters in public view; New Yorkers pride themselves on not being surprised by anything. But here, among the beautiful people, I feel awkward and ill fitting. Waiters overlook me and ask her what
he’ll
be. ordering. I remember one mostly empty restaurant where the manager came out to tell us there were no tables available, and practically chased us out the door!

For the most part these affronts roll off. But sometimes they sting. It’s not true, of course, that my childhood in New York was without such comments. But where I used to be praised as heroic, inspirational, or angelically cute, I now feel insulted.

Some folks, out-of-the-blue, dub ML a saint—others, conversely, let on that I
must
be wealthy (or she would’ve fled by now). Fortunately, we’ve been enlightened by reading the
Disability Rag
and recognize what’s going on. That it’s not just us, or something wrong with us, but something wrong with
them
. So instead of driving a wedge between us, the occasional barrage of prejudicial horseshit brings us closer. It gives us a common enemy. Again, we two against the world!

In 1986, when I’m twenty-three, we’re only beginning to understand we’re part of something bigger. That year, the National Council on the Handicapped will publish a report called “Toward Independence,” which will argue that federal legislation is sorely needed to protect the civil rights of disabled people. For people like me, this study will clarify two important points: (1) you probably have been discriminated against, your civil rights violated; (2) there’s nothing you can do about it because, in most cases, discrimination against the disabled is still perfectly legal.

***

T
hrough all these tensions, ML never bugs me about my under-employment. She sees how hard I’m working to find work. Plus we’ve wisely kept our finances separate. I don’t depend on her financially at all. Just emotionally. In the midst of prejudice and isolation, I lean on her for the validation of love, of connection. And, yes, of sex.

As soon as she comes home from the chaotic classroom where she teaches, I pounce on her with requests, with demands for attention (like a two-year-old, only nowhere near as cute). With a few minor adjustments she can get me more comfortable in my chair than the attendant could all day. Plus I need to tell her every thought I’ve had since the morning—and pump her for information about her day, about the outside world. I don’t have the interactions, the feedback, of the employed. In Los Angeles it’s too easy to become isolated. It’s easy for a writer to become isolated, too. And when you add in a disability, that’s a perfect trifecta for the desolation of loneliness.

I’m twenty-three and still financially dependent on Dad. He pays for the attendant, my health insurance, and any medical expenses it doesn’t cover. Other than that, I’m earning $5,000 a year, at best, from freelance writing, and still receive about three hundred a month from Social Security—now that the SSI debt is paid off—and several hundred more from property and stocks I’ve inherited. Because my combined savings exceeds a measly two thousand dollars, I’m deemed too rich to qualify for Medicaid.

I recall how Dean Crooks at Harvard had said my father must be rich as Croesus; I didn’t understand at the time, but maybe Crooks was right. Though that’s not the way Dad’s behaving. He always seems worried about money— at once generous and tightfisted. Definitely a mixed message. Every three or four months he visits. To him it’s a show of concern, of love. But I can’t help feeling he’s checking on his investment—in me. And time after time I’m just not measuring up.

Before every visit, I get the carpets cleaned, hire a maid service, take the van to be hand-detailed, and cut my hair. He never notices. At fifty-nine years old, he always wants to take us out to “somewhere nice.” Because he once lived in LA, Dad thinks he knows the town. He takes us to Tail o’ the Cock, Scandia, The Windsor, Musso & Frank Grill, the Polo Lounge . . . high-priced eateries of yesteryear. When I’m trying to learn to live on a budget. Yup, a mixed message.

“I could take you under my wing,” he says grandly, vaguely, at almost every turn, “but the financial world can be so dry—you don’t want to do hackwork.”

Dad’s freelancing for financial magazines, fund managers, and firms. It’s steady, well-paid work he constantly derides, belying his fantasies of doing something greater—and, it’s clear to me now, revealing his state of disappointment and depression. At the time, though, I’m left wondering if I’m supposed to contradict or agree.

I start saying maybe. “How can I know, Dad, how I’ll feel about financial journalism? I’ve never tried.”

This doesn’t move him, however. He was just talking theoretically . . . pie in the sky. But there’s an element of blame in his voice. On some level he thinks I’m at fault for my chronic under-employment. He wants to help but is grasping at straws, desperately trying to be a good provider—a provider of ideas, not just money. My failure is his failure.

Actually, what he’s doing is what I used to do—failing to recognize the extent of my disability, and employers’ squeamishness about it.

(Alec, on the other hand, is earning a master’s in applied social research and has “a good career ahead of him” in political and market surveying, proclaims Dad. Though Dad doesn’t say it, the implication is clear, at least to me: Why are you, Ben, having such a hard time finding a job?)

One Sunday brunch, for no particular reason, Dad wants to take us to the Hotel Bel-Air. “If you’ve never been, it’s something special,” he explains.

ML’s had enough of his fancy restaurants and claims a migraine. But I’ve never been there and I’m curious. Dad hasn’t been there in decades, but he remembers it fondly. I think, too, he’s looking for some place in LA where men have to wear a jacket and tie. He’s quite obsessed with dress codes—perhaps a holdover from his GQ days?—and frequently laments LA’s lack thereof.

As my weekend attendant, ML dresses me in my one suit, a button-down shirt, and a favorite conservative necktie. Then she relaxes with the Sunday paper while Dad drives the van along winding Sunset Boulevard to Stone Canyon. It’s a lovely, clear fall day as we pull up to the hotel. Undeniably beautiful, the grand old place’s lush grounds—the stream, the swans, the thick green foliage. It’s like another land. You can forget you’re in the middle of an urban desert.

Inside, we head for the small, darkened restaurant. Is there music—a piano? a harp?—or is that just an atmospheric tone my memory has created? It’s practically empty, and the few men there are indeed in business attire even on a late Sunday morning. I remember ordering tortilla soup because it’s something I’d never heard of; also, the word “tortilla” doesn’t seem to go with the place’s formality, a contrast that appeals.

Recently, as feeding myself has become more difficult than ever, I’ve discovered I do best if my elbows stick firmly in one place on the armrests of my wheelchair. To hold the right position, I need to push up my sleeves and bare my elbows; skin sticks to the upholstery better than fabric. Of course, doing this now will ruin my look—my suit-and-tie look, that is.

“Dad,” I say, trying to be more attuned to and assertive of my needs and wishes, “I’d like to push up my sleeves. Do you suppose I can get away with that here?”

“Oh, I don’t think so.”

He’s dead serious, which to me is the wrong answer. Granted I’d set him up—posed my request as a question. My therapist wouldn’t have approved. But it was a rhetorical question. A joke, sort of. I’d wanted him to say, “Of
course
you can. Who cares what anybody else thinks!” He’d blown his line, his opportunity to step up to defend me and, by extension, the rights of all disabled people—proving he’s more concerned with formality and appearances, with authority and making a good impression, than with my comfort, my need for a reasonable accommodation. To me, it’s a betrayal, a disavowal of my community, my newfound disability consciousness.

“No, seriously, I need to,” I say. I explain how it improves my ability to eat. And he complies. He pushes up my sleeves so I can feed myself.

I make a mental note to bring ML here sometime. It really is a lovely place.

The next day, or perhaps on a subsequent visit, he says, “Maybe I’m giving you too much money.”

It’s almost as if Dad, sitting cross-legged before me at the small glass-circle-topped table in our new one-bedroom apartment, is thinking aloud. The cheap table wobbles as if from the impact of his words. The implication is that financial support is somehow robbing me of motivation. Which is untrue. The logical corollary, then, is that I’d have a job if only I tried harder. Also untrue. What’s worse, pressuring me—making me feel bad—doesn’t inspire me to work better, to think more creatively.

After building me up at the Hotel Bel-Air, he now makes me want to shrivel up and disappear.

***

T
he discrepancy—the rift—between Dad’s perceptions and my view of reality seems so stark and unbridgeable that I become downright stupefied and tongue-tied. Dad still holds such natural authority it makes me doubt myself, my instincts.

When he’s gone, when I’m alone or with ML, my instincts tell me louder and louder that the culprit is disability prejudice. I’m heartened in 1987 by the best actress Oscar bestowed on Marlee Matlin (no relation) for
Children of A Lesser God
, which single-handedly makes sign language and the name “Mattlin”—no matter how many T’s—look cool. And a year later, when students at Gallaudet University, the school for Deaf people, in Washington, DC, pull off a week-long campus shutdown to protest the installation of a new university president who is not hearing-impaired—and win!—I know it’s important and right.

I know things are changing. More profoundly, I know that whether I like it or not I am part of that change. I’ve never been political, but a sense of discrimination is blazing around me like a burning bush, and I know I must respond. I must become involved.

In 1988, when I’m twenty-four, Congressman Tony Coelho and Senator Lowell Weicker introduce a bill outlawing discrimination against people like me in all aspects of society—not just at publicly funded schools and organizations. For the first time in my life, I write to Congress to urge passage.

The following year, the President’s Committee on Employment of the Handicapped is renamed the President’s Committee on Employment of People with Disabilities—followed a few months later by the renaming of the Education for All Handicapped Children Act as the Individuals with Disabilities Education Act. What’s in a name? Not much. But even I learn to say “people with disabilities” instead of “the handicapped.” It’s an awkward phrase, but it
is
the one chosen by the vanguard of the movement so I respect it. Not because of the sanctimonious “people first” movement, or the bogus etymology that claims the word
handicap
comes from the idea of begging with hand in cap. (It doesn’t.) Linguistically speaking, the oldest and arguably most accurate term is “cripple,” which some disability-rights leaders take on as a kind of in-your-face badge of pride. In time, I do too.

One of those leaders becomes a fast friend. Her name is Barbara (just like my stepmother), and she’s starting a local group for Jews with disabilities. To me, this sounds tailor-made for getting me out and meeting people (LA is a notoriously difficult city for meeting people). In our first phone conversation, I’m struck by the pauses in her voice as she takes puffs from a ventilator. I’m also dead certain she doesn’t want my sympathy.
“Ach
, life is tough for everybody,” she tosses off.

What really floors me is when she says she has spinal muscular atrophy, too. I’ve never met anyone who shares my diagnosis.

She invites me to a gathering of friends with disabilities—Jews and gentiles. I’ve never really socialized with other disabled people, but I say yes.

When I meet her face to face, I’m surprised Barbara is so attractive. Wide, soulful eyes and thick, cascading red hair, not the angry hag I guess I’d imagined—not someone who’s rejected society before it can reject her. In fact, she’s an elegant, pencil-thin woman who’s only recently taken to using a motorized wheelchair. The chair has a beeping portable ventilator attached. She has a lot more physical strength than I do, except when it comes to breathing. She drives her own van and can even walk a few steps. She lives on her own.

Spinal muscular atrophy, I learn, comes in many forms.

In time Barbara invites us to a series of dinners and meetings. I become a kind of project for her. At one of the first dinners—at Barbara’s smart, new, government-subsidized accessible apartment—ML and I are introduced to another way of life. Several other ways, actually. Some people are fed by assistants, who stand over them quietly. Another feeds himself with his feet. A dapper man at the opposite end of the table asks to have the
position
of his food identified. “Chicken is at six o’clock, squash at four o’clock, and your wine is at ten o’clock.” Whenever people address him, they identify themselves first. As in, “Hi. It’s Ben.” His guide dog (note: nobody says “seeing-eye dog”) sits quietly at his feet.

The energetic conversation whipping around the crowded room is not whiny and small but upbeat, expansive, sarcastic, and overwhelmingly political. These people don’t just bear their disabilities but bare them—flaunt them with pride.

ML and I, both social chameleons, take all this in poker-faced. We’re acquiring a new etiquette. To be honest, though, I can’t help but feel like I’ve stumbled upon a circus freak show. That’s partly because it’s
all
people with disabilities. Wall to wall crips!

ML is the only guest—as opposed to the few hired assistants—who doesn’t limp or stagger or anything. She doesn’t mind socializing with my new gang—at least to a point. She’s not too fond of the droolers, though— hey, everyone has limits—and resents it when people assume she’s a sort of designated AB (“able-bodied”), ever available to assist with personal tasks like emptying someone’s leg bag. What would these people have done if she weren’t there?