by Ben Mattlin
MIRACLE BOY GROWS UP
MIRACLE BOY GROWS UP
HOW THE DISABILITY-RIGHTS REVOLUTION SAVED MY SANITY
BEN MATTLIN
Copyright © 2012 by Ben Mattlin
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Library of Congress Cataloging-in-Publication Data is available on file.
ISBN: 978-1-61608-731-9
Printed in the United States of America
FOR MY FAMILY OF ORIGIN AND MY FAMILY NOW—
I am truly fortunate.
“No matter what we have come through, or how many perils we have safely passed, or how imperfect and jagged—in some places perhaps irreparably— our life has been, we cannot in our heart of hearts imagine how it could have been different.”
—Randolph S. Bourne, Youth And Life
(Chapter VI: “The Adventure of Life”)
CONTENTS
Cover
Introduction
CHAPTER 1: Two Roads Diverged in Apartment 2B
CHAPTER 2: Disability as a Social Condition
CHAPTER 3: Divorce, Bar Mitzvahs, and Preadolescence—Wasn’t My Life Hard Enough?
CHAPTER 4: My Unfortunate, Life-Changing Incarceration
CHAPTER 5: The End of Childhood
CHAPTER 6: Maman Est Morte
CHAPTER 7: What I Gained and Lost in College
CHAPTER 8: If No One Notices a Disability, Does it Really Exist?
CHAPTER 9: Becoming More Disabled
CHAPTER 10: Nesting
CHAPTER 11: The Bubble Bursts
CHAPTER 12: The Ghanaian Connection
Introduction
My new attendant’s first day starts with basic training: how to wash me (“first the soap . . . ”), dress me (“slide one foot into the jeans leg, then the other . . .”), and lift me from bed into my wheelchair (“put one hand under my knees and the other behind my back and lift me like a groom carries a bride over the threshold . . . ”).
A UCLA student from Ghana, Africa, Jerry had answered my classified ad in the Daily Bruin, the university newspaper, for a morning attendant. The Bruin is my latest favorite attendant source. Its circulation spans the local community, and its classifieds supply staff to many nearby restaurants and doctors’ offices. Something about being just another area employer appeals to me.
Since my last attendant quit several months ago—the group home for retarded adults, his other job, demanded more of him—I’ve been eager to find a replacement but didn’t want to be too hasty either. I know the right guy can improve my mood, my productivity, my family’s quality of life. I don’t know why attendants have this power over me. Doubtless it has to do with their being such a constant presence, to the extent that they function as my arms and legs. Perhaps it’s also because they always used to be older than I am; I saw them as surrogate big brothers or even fathers. Now that I’m nearly forty-four, I should be in the daddy role. I should have more natural authority. Maybe it’ll go better from now on.
My first impression of Jerry was the proper résumé he’d e-mailed, which is unheard of in this line of work. He’d then arrived on time for his interview, neatly shutting the door behind him, which I always watch for as a sign of not just tidiness but a sense of personal responsibility. He’d proffered a hand, and I as usual said something like “can’t reach you, but I’m pleased to meet you.” He’d calmly proceeded to lower himself onto our sofa, pushing up his glasses and pulling up his loose-fitting, low-slung jeans.
I always try to imagine how it will be seeing this person early in the morning, when I’m not awake enough to want to see anybody. Jerry looked scruffy—long dreadlocky hair and a ragged beard of sorts, like many young men these days.
“How are you today?” he’d asked, presenting a typed list of references, which is impressive in itself. “And what would you like to know about me?”
No obvious accent, which reassured me there’s a fair chance of good verbal communication. For me that’s essential, since I can’t point or otherwise demonstrate physically what I need.
Jerry has just transferred to UCLA. He’s twenty-five and on a student visa. He works evenings with troubled high school kids. He likes helping people— his goal is to get a good education and go back to his country to help institute social reforms and keep the peace—but has never worked with disabled people or in any kind of medical setting.
That’s the way I like it. I don’t want to be called “the patient.” Those with any kind of background in the field tend to think they know what’s best for me. They don’t. Not all of us who ride in wheelchairs are the same.
“Your ad said ’will train,’ and I like that,” he’d said next, smiling. “When you say you need me to shave you, for example, you can explain how?”
“Yes,” I’d answered, thinking I’ve found my man.
I told him I’d check his references and be back in touch shortly. It may sound like a dodge, but I always check references. In the past, I’ve uncovered all kinds of unforgivable dirt. His turned out to be stellar. A few days later I offered him the position—two hours every weekday. That’s all I could afford at the moment.
After a successful first day, while tying my shoes, Jerry asks a question that’s dangerously close to my tolerance boundary: “How do you stay so positive?”
It’s just baby steps from calling me inspirational. Which I’m used to, of course, but still. “I don’t, and I’m not,” I answer. “Just doing what I gotta do.”
The next day he again comments on how much he enjoys my “positivity” and wonders what keeps me going.
“Necessity,” I say sarcastically.
“There’s so much anger out there,” he goes on, undeterred. “I work with high school kids who have trouble functioning because they’re so filled with anger. You don’t get angry?”
“Sure. Wait till you know me longer.”
Gradually, it sinks through my self-righteous emotional shield, burnished by the disability-rights movement to rebuff all but the most specific forms of praise. There’s something different about what he’s saying. My earnest young employee is commenting not about something over which I’ve no control— the fact that I’ve lived my whole life with a severe neuromuscular condition— but about my attitude, an attitude I’ve adopted and nurtured, a doggedly honed personality trait, a survival strategy, perhaps. He might’ve asked the same question if I didn’t have a disability!
How have you survived this sometimes rough world?
I could’ve asked him the same question. An immigrant from a poor country, working his way through school, dedicated to helping others. What drives him? (Another odd realization: This time the attendant is inspiring me!)
Usually the “you’re so inspirational” business is followed by something like, “You should write a book about your life. It would be so inspirational for so many people! Then you could go on Oprah!” Which turns me off. Nothing against Oprah, but let surv
ivors of abuse, cancer, or war coax tears from readers’ eyes. Not me.
Yet Jerry doesn’t resort to the book-and-Oprah spiel. Not exactly. What he does do, that morning and for many others that follow, is get me talking. And that’s when I realize something. I do have a lot to say. And I do have a personal history that’s not the same as everybody else’s. It’s a story of luck and persistence, by turns ordinary and extraordinary. And, upon further reflection, I come to see how closely my story tracks a surge of unprecedented advances in medicine, technology, and civil rights that people with disabilities have enjoyed and harnessed. Indeed, the synchronicity between that movement and my own is surely more than coincidental.
Maybe it’s my age. There comes a point when you get too old to care what other people think. Perhaps I’ve at last reached a level of maturity from where I can look back at my varied experiences with unself-conscious honesty and feel nothing but humbled and grateful.
And if it happens to inspire people, that’s their problem!
CHAPTER ONE
TWO ROADS DIVERGED IN APARTMENT 2B
1962–1966
“I am not my body; my body is nothing without me.”
—Tom Stoppard, Rock ’n’ Roll
In 1962, some 4 million babies were born in the US—nearly 700 of them with an undiagnosed neurological disorder that will gradually weaken their muscles until, in most cases, breathing becomes too difficult, pumping blood becomes impossible, and they die.
I am one of the 700.
Though hereditary and therefore genetically present at birth, spinal muscular atrophy—as it’s now known—can remain invisible until late-childhood or even adulthood. Mine shows up before I’m six months old. Half of those who manifest symptoms in infancy die before they reach the age of two. Their hearts and lungs become too weak to go on.
I am one of the lucky ones.
By the time I’m six months old, my mother has already noticed I’m not progressing as my older brother Alec did. I can’t sit up by myself. When placed in a sitting position, I fall over. After I bang my head on the parquet countless times, my parents stop sitting me on the floor. They sit me on the sofa instead, surrounded by pillows. They sit me in a high chair, where I can be strapped in. Later, they put a small football helmet on me, especially when I try to balance on my rocking horse or tricycle, or when Alec and I roughhouse. It’s too heavy, however, and makes staying upright even harder.
My parents know something is wrong, but they don’t know what.
They ask the pediatrician, who refers them to a specialist. The specialist recommends another specialist. And so on. The months become years, during which I am paraded before countless physicians, therapists, researchers, and even a few crackpots. No faith healers (thank God!); my parents are not praying people. Still, I wouldn’t be surprised if they offered up a few silent ones during the long waits in hushed waiting rooms and perhaps in the dead of night.
Even in the twenty-first century, when SMA is well known among neurologists, there’s no slowing or stopping it. It’s now considered the most common cause of genetically based neonatal death. It’s estimated that one in every 6,000 Americans is born with a form of it, and one in 40 carries the gene that causes it without ever manifesting symptoms. In comparison, approximately one in every 300 Americans is HIV-positive, and one in every 206 has some form of cancer, according to the Centers for Disease Control and Prevention. SMA is more common than, say, ovarian cancer, which strikes one in every 8,065 American women (including my mother and maternal grandmother).
Not until the 1990s do researchers finally zero in on the exact genetic mechanism behind SMA. Most cases stem from a faulty gene on the fifth chromosome, which results in a deficiency of what’s called SMN1, a necessary protein. This deficiency, in turn, depletes motor-nerve cells in the spinal cord. But certain instances of infantile SMA have a different culprit—a mutation of a gene called UBE1, which happens to be on the X chromosome. This mutation impedes the disposal of a bad protein, allowing it to flourish. I don’t know which version causes my SMA. In either case, these markers make SMA scientifically identifiable and may someday lead to effective treatments.
But in the ’60s, when I’m a child, SMA is undiagnosable and, perhaps consequently, considered extremely rare by those who have heard of it at all.
So I’m at first diagnosed with many other conditions. Spina bifida. Brain damage. Mental retardation. That last one invariably coaxes a chuckle from my dad later, in the retelling: “Those doctors were retarded!” In my cerebral family, God forbid you should make fun of the physically handicapped—and don’t dare say “cripple”—but the mentally retarded are fair game.
One thing all the doctors and sundry experts agree upon, however, in the early ’60s: I’m a “floppy baby.” I have what’s called “floppy-baby syndrome.” It’s still a recognized pathology in medical dictionaries. I lack muscle tone. A more scientific-sounding word for lacking muscle tone is “amyotonia,” and that’s what becomes my first official diagnosis. I learn to say “amyotonia” before I can add two and two. For me, it’s a way of understanding my body—a plausible answer for the strangers who point at me and ask, “What’s wrong with him?”
Or more often, “What’s wrong with her?” The blond curls and long eyelashes I sport in those days apparently emasculate me. Never “What’s wrong with you?” I’m not considered competent to answer such a question myself until I’m at least seven.
Nothing is wrong with me! I just have amyotonia, I think to myself. My typical spoken answer, once I’m old enough and courageous enough to speak up: “I can’t walk. I was born this way.” It seems simpler and sufficient.
I can’t walk or stand on my own. When I’m four, my doctors prescribe a battery of physical therapy; as part of it I’m fitted with heavy, metal leg braces. The braces lock me into a statue-straight posture. I’m then placed in a large wooden box, which supports my standing frame. I do this for an hour, three times a week, to aid circulation and overall well-being, or something. It’s the closest a modern American child can come to foot binding—yet it’s still recommended for many kids in wheelchairs! Luckily for me, the standing therapy is rescinded in a matter of months, when it’s determined to have no value. Nevertheless, other physical therapy exercises continue.
In nearly every other aspect I’m a healthy and happy kid. Yet every time I catch a cold I’m at high risk for pneumonia. I can’t cough with sufficient force to clear mucus from my lungs. Regardless, from an early age I refuse to think of myself as fragile. Sure, I’m floppy and do bump my head a lot, but I always bounce back. I’m tough, resilient. I’m a survivor. The labors of my disability strengthen my character.
Other remedies are offered from time to time by physicians, therapists, and outspoken streetcorner healers: Massive doses of vitamin E. Transplants of sheep blood. And, of course, acceptance of Jesus Christ as my savior. For the most part my parents resolutely favor modern medical science, but in those days even the legit experts come up abashedly empty-handed. For one thing, my symptoms keep defying expectations.
Specifically, I don’t die.
***
“Today my little brother fell out of his wheelchair and dropped his fire engine.”
This is what Alec writes in his first-grade composition book one spring weekend when I’m three. He writes it after Dad takes me to the Lamston’s under our apartment, on York Avenue at 79th Street in New York City. It’s one of my first outings in my shiny new green-upholstered wheelchair. Up till then much of my life experience is from the perspective of Mom’s slim hip, Dad’s long arms, a baby stroller or the sofa, wedged with pillows. But soon I’ll be starting nursery school—at Riverside Church, the only regular nursery school in the city that will take a physically handicapped kid in 1966—so I have to get a proper wheelchair.
I like Lamston’s. I’ve been there before. Our housekeeper / baby-nurse Inez has taken Alec and me a few times. Inez is strict. She’s what I understand is c
alled an Egro. She and other Egro baby nurses and maids meet at the Lamston’s lunch counter to eat and smoke and gossip.
Today Dad says I can buy a toy at Lamston’s if I’ll be quiet and behave. It’s not hard to choose. I want a Matchbox car. When Dad is done shopping, I remind him of his promise and he pushes me to the toy aisle. But the Matchboxes are on a high shelf. Too high for me to see well from my wheelchair. Dad undoes my seatbelt and lifts me up for a better look. He’s strong and tall, and with him I feel safe and have no restrictions.
I pick a small fire engine. I don’t have any in my collection, and I want one because fire engines can go anywhere. They have no boundaries.
Dad buys it for me, and I clutch the little hook-and-ladder in my small hand as tightly as I can.
On the walk home Dad abruptly decides on a detour. Instead of pushing me around the corner at 79th Street he makes a sharp left toward the garage under our building. “A change of scene,” he says. The steep ramp down is dark and cool as we get closer. The descent begins, and I feel its pull beneath me. Dad holds tight to the handles of my wheelchair. The downward pressure intensifies. Before I know what’s happening I’m tumbling out of my wheelchair onto the hard, oil-stained incline. And I keep rolling . . . out of control, on my own, a rag doll without enough muscle to stop myself . . . until I bump against a side wall. And just lie there.
I don’t remember crying. I don’t remember hurting. I remember thinking—having an acute, reflexive alertness to my surroundings and taking a kind of mental inventory of where I am and how I’m feeling. An out-of-body alertness. There is nothing else I can do. I’m too stunned to hurt or cry. I can’t move anything—I never can—but I can be aware and wholly conscious, an omniscient observer. Then Dad is there, beside me, asking how I am, touching me, examining me for damage and scooping me up off the garage floor and placing me back in my chair. This time he remembers the seat belt.
