Miracle Boy Grows Up

by Ben Mattlin

  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.

  ***

  Separately, 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.)

  Dragon opens a world to me that’ll include the Internet, of course—a completely accessible means of not just socializing but doing research, which I always found problematic in traditional libraries. In short, I’m no longer excluded from the computer revolution.

  ***

  “Here kitty, kitty, kitty,” ML calls out from the terrace to the feral cats in the neighboring apartment’s courtyard. Her voice takes on a baby-talk quality when she comes inside and says, “I want something small to take care of.”

  This, or something like it, happens morning after morning.

  Then, when we’re out walking in the neighborhood, she accosts a bouncing toddler who’s joyfully making his escape from his tired-looking nanny: “Excuse me, young man, but your shoes are untied.”

  The final tea-leaf revelation come
s when she tells me her OB/GYN recommends a particular brand of ovulation predictor.

  I know she went off the pill when we moved to the condo. She’d said she wasn’t ready for kids yet but had heard “it can take five years to get all the pill out of you.” Somehow, baby fever has come more quickly than expected—ask not for whom the biological clock tolls.

  “I’m thirty-two,” she reminds me, when showing the OvuQuick she’d purchased. “I’m already past my prime. Motherhood is slipping away!”

  And so we begin the process. I’m fully functional sexually. No obvious explanation why she’s not pregnant, after several months of basal-temperature taking and OvuQuick. The stresses quickly compound. ML can’t shake the sense of inadequacy, of defeat. The fact that her mother first become pregnant in her mid-twenties, and her younger sister already has three kids, adds a bitter flavoring to her emotional salmagundi.

  Call it a crip thing, but I start out sure we’ll find a solution if we’re patient enough. Your body betraying you? Find a technology, a treatment, a creative workaround, a funding source—whatever it takes to accomplish your goals.

  We venture together to a pantheon of fertility doctors. We learn I have a low sperm count—that’s the diagnosis. Doubtless it’s due to my sitting all day—or, it occurs to me, my frequent X-rays as a child. I recall many an X-ray technician when I was growing up who dismissed the notion of my ever fathering children and, therefore, needing a lead shield over my privates. Unless one of my parents was there to insist, it didn’t happen.

  Used to seeking medical expertise, to forcing my body to do things it doesn’t naturally do, I feel no hesitation about beginning hormone treatments.

  First pills. Then injections. Gonadotropin (trivia: it’s made from the urine of postmenopausal nuns!) is so expensive (and not covered by insurance) that we drive to Tijuana to snag the vials cheap. We find a favorite motel in La Jolla to spend the night, and try to make the best of a bad thing. We have to make the trip multiple times.

  On one such adventure we’re stopped by a border guard. “Do you have a doctor’s prescription for this?”

  “No. Not on us. But he did send us here for it.” Which is true.

  The uniformed immigration Gestapo stares us down and repeats his single message: “You have to have a doctor’s prescription.”

  In memory, I pride myself on breaking the standoff. I say to the guard as flatly and self-confidently as I can muster, “So what do we do?”

  And I’ll be damned if he doesn’t back down! “Oh, I’ll let you through. This time.”

  In fairness, ML’s version of this—and of the four and a half grueling years we spend in the dark maze of infertility, the seemingly endless cycle of monthly disappointment followed by the fragile, tentative rebirths of hope—would surely be different from mine. But to me, she becomes hopelessly sullen and withdrawn, as if she’s stumbled down a bottomless well.

  About three years into the ordeal, to maximize our odds, ML starts hormone treatment to increase her egg production. (She has to give herself the injections.) One Saturday morning during this time, we go to the hospital for the egg retrieval. I pace the halls in my motorized wheelchair for the several hours she’s in surgery—only I can’t take it. It’s become difficult controlling my chair now that my hand is weaker, plus I grow uncomfortable and need someone to shift my weight. But there’s no one.

  When ML comes out of surgery, I ask if she could move my hand in a particular way. She’s groggy from anesthesia, can’t help me, gives me a dirty look. “I can’t!” she says. It sounds general and all-inclusive, like she can’t take any more.

  I wait. I bear up. Gradually she recovers, and we go on. But I’ll never forget. I’m not proud of myself, of my inability to cope on my own, of my weakness under duress. But am I supposed to be able to cope on my own? After all, part of the independent-living philosophy is being honest and realistic about one’s needs and limitations—and accommodating them accordingly. That is, having the maturity to take care of oneself. I vow to learn a lesson from this.

  In the end I join an infertility support group. ML declines to go with me. I’m a believer in talk therapy; she isn’t, at least not for herself. (For other people, she’ll say, it’s fine. A matter of personal preference.) But it is that infertility group that refers us to a reproductive endocrinologist who changes our game plan.

  In May of her thirty-sixth year, I receive a phone call at home. Which immediately leads me to call the small private elementary school where she’s been teaching for the past few years. I tell the receptionist it’s important. When ML gets on the phone, I tell her what I’ve just heard. With her elementary-schoolteacher’s all-in-from-recess operatic voice, I hear her yell “I’m pregNANT!”

  As the months pass, I have no choice but to hire additional attendants. Dad is completely amenable and generous when I request extra dough (his clubby, tongue-in-cheek slang, not mine). Sometimes Dad seems more concerned about ML’s well-being than mine, but probably every husband of a pregnant woman has felt something similar.

  Our daughter (we had the ultrasound) is due Christmas Eve. She’s late. A few days after Christmas, with no sign of contractions, we see a specialist at the hospital. (ML drives us herself.) “The baby has the cord around her neck three times,” declares the specialist, wielding the ultrasound wand.

  A heavy silence fills the small examination room. Again, in the movie in my mind, I’m the one who breaks the standoff. “Should we be worried?” I ask.

  “Yes,” he says, and orders an immediate C-section.

  During the prep, with a little help from ML as she tries to lie still, I use her new cell phone—bought just for this purpose—to call Jorge, then Roger, a man I’d hired off a list from the independent-living center to stay with me overnight when necessary.

  The delivery-room nurse struggles to put a gown over me. It gets caught on my chair controller, and I almost run her over before I can make her understand. After, I tell her to put my chair on manual and just push me.

  She pushes me right up to where ML is splayed out and partially anesthetized. At my trusting, helpless wife’s request, I begin a gentle play-by-play of what I see going on.

  A few minutes later—as the delivery-room radio plays The Monkees’ I’m A Believer (“Then I saw her face …”)—Paula is born (named after my mother). And everything is fine.

  ***

  I stay with ML and Paula at the hospital as much as possible. Remembering the egg-retrieval ordeal, I’m diligent about having Jorge or Roger check in with me every hour and a half to two hours. I’ve learned I need that, need someone to adjust my position, take me to the bathroom, or get me a sip of water at regular intervals. So I can cope over the long haul. And it works! I do not freak out this time. Self-knowledge gives me a kind of power. I wasn’t sure we could do this, ML or I. But we do, and I’m proud of us both.

  CHAPTER TEN

  NESTING

  1996-1999

  “My wife made me what I am today—completely self-reliant emotionally!”

  —Anonymous

  “So basically she’s like a single mother?” says a particularly frank (read tactless) friend of mine.

  I had thought that myself for a time, so my answer is all worked out: “Not at all. There’s more to parenting than changing diapers, you know.”

  Still, it is a crummy question. Accusation, it seems. I know my buddy is needling, but he’s probably not the only one in the world likely to draw such a conclusion.

  The facts are these: I don’t have fantasies of teaching my kid to throw a baseball or catch a football or go fishing. None of that jock stuff. But I would like to ride with Paula on the merry-go-round, carry her high on my shoulders, build sand castles together. Stuff Dad did with me and I remember fondly. But I’ve resolved myself to the reality that I can’t be the kind of father I had; if I try to do activities other dads do I’ll fail and feel miserable, defeated. Yet just because I can’t do those physical fatherly
tasks doesn’t mean I can’t contribute.

  A while back I’d attended one of those community forums at the independent-living center. A woman explained that just because you don’t do things in the way other parents do doesn’t make you unfit to be an actively involved parent. You just have to find your own methods, your own “reasonable accommodations.” She was a wheelchair-riding foster mother who had proved her maternal chops over and over.

  I don’t explain all this to my alleged friend. I simply say that I have my ways of managing. In truth, from the moment Paula was born I launched a new chapter in creativity. Thanks to a startup group in Berkeley called Through the Looking Glass—which is dedicated to parenting with disabilities—I know I’m not alone in this. Learning how other disabled parents cope—what they’ve invented—sparks ingenuity.

  For instance, I suggest ML strap a Baby Bjorn to the push handles of my chair, so Paula can ride against my chest looking either backward or forward (without killing my shoulders or upper back). We take many family walks around the neighborhood this way, with me usually whispering (okay, trying to sing) softly to Paula’s curly-topped, half-asleep head.

  When she’s a little bigger, we hook a couple of PVC pipes between her stroller and the front of my wheelchair so I can push her in the park.

  When Paula’s a toddler, a photo in the Through the Looking Glass newsletter gives us our best idea yet. It shows a mother who installed a child’s seat between the footrests of her wheelchair. We devise our own, simpler version. ML takes an old belt out of the closet and stretches it across the backs of my footrests, behind my calves. Paula instinctively knows what to do: She waddles toward my feet—invariably untying my shoelaces, just for a laugh— stands herself by pushing down on my foot pedals, climbs up, spins around, and sits herself on the belt, between my legs, with the back of her head basically level with the upholstery of my seat.