Miracle Boy Grows Up

by Ben Mattlin

  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?

  Yet for me there is a magnetic pull. Have I found my long-lost tribe? Is this the cure for my existential loneliness? Among them, can I stop pretending I’m a gainfully employed yuppie? Can I stop feeling bad about not being one? I recall my mother’s repeated advice, and understand at last why she encouraged me to spend time with other disabled children.

  An odd thing about this new milieu of mine: it’s pretty clear who the enemy is. Nondisabled people, often referred to as TABs, for Temporarily Able-Bodied, may be useful when you need them. But when it comes to the struggle for autonomy and equality, they are definitely the oppressors.

  ***

  My new friends ask me to write an op-ed against the Jerry Lewis telethon. Barbara says I’m the best one to do it because I’m an ex-poster child.

  There’s an offensive piece in Parade magazine ostensibly written by Lewis as he tries to imagine himself in a wheelchair. It’s the usual drivel, but Barbara says it must be answered. She introduces me to Paul Longmore, a historian of all things disability. I already know his name from articles I’ve read. He’s famous for publicly burning his own book, in protest, when his earnings led Social Security to cut his benefits.

  Paul gets me up to speed on the history of disability as a social construct—and I’ll never see the world the same way again. First, he says, came the “moral model” of disability—physical deformity as a sign of spiritual decay and sin. Any number of villains come to mind. The Phantom of the Opera, Captain Hook, Long John Silver, etc. Then came the more enlightened “medical model”—disabled people are victims, not villains. They shouldn’t be feared but pitied, helped, healed, cured. Best example: Tiny Tim.

  In the 1970s came the revolutionary “civil-rights model,” in which people with disabilities began to define themselves and advocate for their rights.

  Thus inspired, I write an essay I call “An Open Letter to Jerry Lewis,” pleading with him to change his offensive ways. I overnight my piece to the New York Times—the only paper that matters, according to my upbringing— and it’s accepted. Unfortunately, news events—especially Iraq’s invasion of Kuwait—intervene and my essay is canceled. A year later the LA Times publishes a revised version.

  ***

  Barbara also introduces me to Kelly. Kelly is a dynamic woman who’s only about four feet tall. I find her deep maple-syrup voice, pleading eyes, and soft hands seductive—and she encourages me to, pressing herself close, holding my hand at gatherings. Only later do I discover that’s because she and the guy she’s living with are having problems and she wants to make him jealous.

  Could ML really ever understand me, not being disabled herself? I find myself wondering. Have I made a wrong turn somewhere? Did I go for ML as a kind of mother substitute all those years ago, and now need a more mature relationship?

  My infatuation with Kelly is short-lived, but for a time I feel genuinely tempted to cheat on ML. I have something to prove—something about my attractiveness, my freedom and mobility. I need to know I’m with ML because I want to be, not because I have to be. Not because I’m stuck.

  When we talk about it, ML says, “I hope she’s good for you.”

  Later, after the evil temptation has passed, we skirt around the issue of our interdependence and the pressure it’s brought to bear. She says we’re both stuck, in a way. “But that’s not necessarily a bad thing,” she says. We owe a lot to necessity. If I left her, I’d be stuck until I made other attendant arrangements. At the same time, she can’t leave me because she knows I depend on her. “But that keeps us together, gets us through the rough patches,” she says.

  “I don’t want our relationship to be based on obligation,” I protest.

  I know it to be true, though—our interdependence has become oppressive. This is partly why I’ve thrown myself into the disability-rights movement, why I’m so attracted to people with whom I have no dependency issues.

  We’re talking in our apartment. I’ve turned around from the table where I’ve set up a computer, speakerphone, and tape recorder. I’ve worked out a system for the computer. It involves using the eraser end of an unsharpened pencil, for leverage. Sometimes I copy and paste individual letters from one document to another, to make entering text easier. It’s a slow process but I derive a tremendous sense of accomplishment and autonomy from it.

  ML is leaning on the kitchen counter. It’s a tiny kitchen, but then there’s just the two of us. Which is part of the problem. I’m still completely reliant upon her at night and on weekends. It’s become a bad habit—one I suspect we’re both afraid to break.

  I wonder aloud if I ought to hire more assistants.

  “But then we’d have to deal with them,” she groans in such a way that we both chuckle.

  She’s never liked any of my attendants. She says she can do the job better, which is true. Nobody has ever cared for me better than she does. But her resentment of them is self-defeating. Can’t she see that her solicitousness reinforces my dependence on her . . . and generally undermines my sense of autonomy? I may not like the attendants either, but they’re essential to my maintaining a separate life and so, sometimes, I make myself find something to like about them.

  Then again, I must acknowledge I don’t know anymore why things are the way they are. Do I lean on her too much, my spine turned to mush? Or has she become addicted to my needing her?

  “Besides,” she continues, “even when I’m not here—when I’m at work—I still feel responsible. None of them is really all that capable or reliable.” She pauses, reaches toward me, and abruptly pulls out one of my eyebrow hairs. “Was about to fall into your eye,” she explains as if it were the most ordinary gesture in the world.

  It may be true, but she has to stop doing that, stop invading my personal space, stop mothering me. And I have to stop letting her. That is, if I can make her stop.

  At the moment, the attendant is particularly bad—which tends to feed the problem, to make me cling to her all the more (and make her exhausted compensating for his shortcomings). When Peter didn’t show up one morning—and his roommate said he’d packed up and disappeared, owing a month’s rent—I’d hired a new guy from an agency: Sunday. That’s his name. (Truthfully.) He says his father is a Nigerian tribal chieftain (why do these guys always need to impress me with how important they used to be?) who had no less than twenty-five wives and eighty-five children . . . and they just ran out of names.

  I think because of Kenny—my old high school helper and pal—I’m prejudiced in favor of Black guys. I liked Sunday at the beginning. He’s tidy and clean, wears nonprescription glasses for cosmetic purposes, and is full of outsize ambitions. But the relationship has deteriorated. He’s showing up late in the morning, making foolish excuses, and failing at routine errands (again with absurd explanations).

  There was one early sign of weirdness, come to think of it. Doing our laundry, he announced he wouldn’t wash ML’s bras and panties—couldn’t even remove them from the hamper! “It is a custom among my people. I am forbidden to touch women’s undergarments,” he explai
ned.

  By this point, I’m looking for an excuse to fire him. Still, I need to know I can cope without ML. That I could find a better attendant—a team of them— and survive on my own, if necessary. Not have to go back and move in with Dad, which has become one of my biggest fears.

  But then, am I with her—do I occasionally appease her—simply because she’s the best helper I’ve ever had or ever will have? Back when I agreed to let her do helpful tasks for me, was it our romance’s death knell? Is it too late to rectify our love?

  “You’re not so perfect yourself,” I say, for lack of a better comeback, still blinking from her impromptu plucking.

  We have a joke that we would’ve broken up long ago but our fights are so damn clever and enjoyable. This time, mine is a poor showing.

  “Look, I don’t want to leave. Where would I go?” she says. “Besides, if the fact that you need me keeps us from breaking up—if it sort of forces us to work out our differences—maybe that’s a good thing.”

  We agree that if we’re still together in three years we’ll get married. We shop for a cheap diamond ring and everything. I just don’t want to tie the knot before I’m twenty-five, and I imagine she doesn’t want to turn thirty still single. This cockeyed logic somehow makes sense to both of us.

  ***

  In August 1989—when I’m twenty-six and she’s twenty-nine—we have a small, interfaith wedding at a hotel in West Hollywood. (The Bel-Air was too expensive.) I’ll never forget how . . . when I first see her in all her bridal finery . . . even after six years’ living together . . . her magnetic chocolate-brown eyes, firm cheekbones, and soft pouty-smiling lips snatch my breath away. (One of those clichés that’s spot-on accurate.)

  Our families gather around, toast us with champagne, and make a few speeches. In his toast, Alec says, “I’m glad Ben’s found someone to take care of him.”

  Ugh!

  (At least I think that’s what he says. His actual words may have been “someone to care for him.”)

  Shortly after, we travel East to share our wedding album with family who couldn’t make it. In Baltimore, I’m particularly pleased to see Great Aunt Sarah—a thin, tirelessly warm-hearted favorite of mine who must be well into her nineties at this point.

  “Look at you,” she says slowly, seated in a high-backed chair beside me, reaching a spidery hand toward my inanimate one. “Look at you. Paula’s miracle baby!”

  “Oh, come on—”

  “You are. To think how she cried when you were small . . . You weren’t supposed to live. You are a miracle. Paula’s miracle baby.”

  Contemplating this after, I shrink away from the absurdity of it. The responsibility—being a miracle is a burden, a burden I don’t need. And yet, am I a miracle baby . . . all grown up?

  A year after our wedding, the Americans with Disabilities Act is signed into law. It doesn’t end “disability oppression.” It doesn’t get me a job. But it tells ML and me that we’re not alone in the stresses we’ve been facing. They’re real, I haven’t imagined them, and they’re not fair.

  CHAPTER NINE

  BECOMING MORE DISABLED

  1992-1995

  “Life is a tragedy filled with suffering and despair and yet some people do manage to avoid jury duty.”

  —Woody Allen, in the New York Times,

  October 16, 2011

  It’s Super Bowl Sunday—a fact I’m only dimly aware of, not being a football fan—and we’re sleeping late. We’ve moved to a two-bedroom condo down the block; the second bedroom is my office, at least until there are children to fill it. The down payment for which came mostly from liquidating the stocks I’d purchased after selling the New York apartment, and partly from Dad— what he’d elusively and morbidly called “an advance on inheritance.” We had the doorways widened for better wheelchair access—perhaps the chief benefit of home ownership.

  When we’re both sufficiently awake to communicate on this chill February morning, I ask ML to roll me onto my back. Nothing unusual in that. It’s my wake-up position—suitable for watching TV, drinking coffee, making love, or just cuddling, etc.

  This particular morning, it seems it’ll be coffee and TV. Except something feels wrong. My right leg is . . . asleep, maybe? Semi-numb. All tingly. Probably slept on it funny. It’ll go away, I figure, and don’t mention it until later— when I tire of the Sunday morning TV preachers (though their methods of communication I find fascinating) and infomercials for luxury real estate.

  “Can you move my right leg, please?” I say. “Turn it over, to the outside …”

  She does what I ask. The icy exoskeleton sensation remains unmoved.

  Still, I do not panic. Waking up with a numb limb isn’t entirely new to me. There have been mornings I arise with a hand that feels comically swollen, like Wile E. Coyote’s paw after it’s been smashed under a ten-ton boulder. The result of sleeping with my head on my hand. Always fades in a few hours.

  And as a kid, I recall, I had many such strange spells—the inexplicable “fireballs” that intermittently and invisibly pummeled my skin one summer, cured only by mysterious capsules prescribed by a Fire Island doctor—a placebo, I suspect now—followed months later by a flu-related sensory episode I called “the flat feeling” that temporarily twisted my perceptions of textures and surfaces. Both never explained—chalked up to a combination of childhood imagination and my wacky neurological makeup.

  This time it’s my entire leg, from the groin down . . . the extent of which I slowly realize as ML washes me. But she’s so used to my kvetching about minor discomforts—my position in the wheelchair, say, or sinus irritation due to changing weather—that she scarcely pays attention to my tentative complaint.

  Once I’m up, on the phone with Barbara—my ambassador to the disability community, not my stepmother—I ask if she’s ever experienced a tingling numbness like this. (Speakerphone-to-speakerphone conversations are tricky, since they only communicate one way at a time. Whichever end is louder drowns out the other. Fortunately, we’re both used to this phenomenon and diligently take turns.)

  “Freaky,” she says. “Life with smah....” (She’s referring to spinal muscular atrophy, or SMA.)

  “But it’s not supposed to affect sensory nerves, just motor nerves,” I say.

  “Doctors can be a great resource, but don’t believe them all the time.”

  I’ve been brought up to trust doctors like they’re Holy People, but I have to admit I’m finding the insights of other folks with disabilities like mine much more valuable. And given the dubious tradition of nondisabled people speaking for the disabled—clinicians, writers, politicians—it’s eye-opening to talk with someone who’s been there, who shares your perspective.

  That afternoon ML and I go to her brother’s new house in Chatsworth. It’s a big Victorian-style number, and her whole family has gathered there. They spread out and sort of float between rooms; there is no organized, formal center, not with my in-laws. Conversation is similarly scattered and random, but unfailingly pleasant.

  Eventually my father-in-law turns on the football game, and I sit and watch with him without much interest. Part of my problem is, I never learned the rules of football. As a kid I could hold a Wiffle-ball bat and get pushed around the bases, so I learned the basics of baseball. But football? Never.

  And there, in front of the TV, in the deep-red-paisley-papered den, my right leg is throbbing worse than ever . . . and my left one is starting to get pins-and-needles, too.

  I keep it to myself, but the sensation—thrumming and dull, not painful— is spreading.

  ***

  “It’s a neuropathy,” says my physician. I’d called him first thing Monday morning, and he was able to see me that afternoon. To me, there are two kinds of doctors—those who merely go through the motions, who minimize your complaints and worries, never taking you seriously, and those who overreact, who treat you like you’re in intensive care. I prefer the latter. These are doctors who make me fe
el like a VIP.

  This particular doctor is an asthma expert, that being my chief ailment, but he’s also an internist and the only doctor I’ve seen on a regular basis since moving to California nearly seven years ago. I trust him and like his occasionally gruff manner. He never shies away from giving a precise diagnosis, even if it’s a bullshit term like neuropathy. (He’s Dad’s age and in fact was referred by Dad’s internist in New York.)

  “I’m going to give you a shot of vitamin B12,” he says, “and if you don’t feel better by tomorrow I’ll refer you to a neurologist. Do you have a neurologist?”

  “No,” I say, thinking not since Dr. Spiro back to New York.

  If you’ve never had it, I recommend B12 as a great pick-me-up. I leave his office feeling euphoric, with energy coursing through my veins. My new attendant, Jorge, whom I hired from the California unemployment office—a great new source of candidates, I hope—after Sunday left for Nigeria (and subsequently leveled a workman’s comp claim for alleged back strain, which he’d only noticed a month after being replaced), drives me home. Jorge asks no questions. That’s partly because he’s too busy wolf whistling at women out the van window. (Another stereotype, I know, that’s nonetheless true in this case.)

  The tingling, now spread upward to my chest, continues undeterred.

  That night, ML and I make love. (B12 is also a terrific aphrodisiac!) For me it’s a weird experience. Afterward I timidly ask, “What just happened?”