by Ben Mattlin
He keeps asking if I’m okay. This is when I start to cry. A few heaves at first, then gushes. He rushes me upstairs, to our apartment, to Mom. I can’t stop crying, though I try. I become breathless.
“There, there,” says Mom, taking me into her arms. She quickly turns practical. “Stop your crying and tell me what hurts.”
I can’t stop bawling and haven’t a chance of answering. She holds me still a moment and it feels warm and lovely. Then Mom sees a bump on my head. I mutter about my finger and try to produce my right hand. Its ring finger is swollen and rosy-purple and aching. Mom calls for ice, which Dad promptly delivers. My weeping subsides, replaced by a youch at the touch of ice to my scalp.
“You’ll be fine,” Mom declares.
She puts the ice to my finger and looks up at Dad with lightning bolts.
Parents of kids with disabilities tend to be unduly overprotective. It’s the extra layer of guilt. From the start they feel responsible for their child’s limitations. It doesn’t matter if the disability is from an accident or heredity; parents see it as a gnawing reminder of their own shortcomings. They feel intrinsically blameworthy. I’m grateful my parents aren’t overly overprotective, but they feel the guilt. For Mom, the day she learned my floppiness was permanent and inborn was the worst of her life. She tells me this whenever I ask and even when I don’t. That’s partly because she’s concerned about my future, but she also questions what she did to deserve this. For Dad, the guilt feelings evolve into a hunt for solutions, and for someone to blame besides himself.
Many parents turn angry—an animal rage directed at doctors, bureaucrats, God, or even the child him- or herself. Sometimes these feelings spark a crusade for remediation or justice, a frantic pursuit of a lawsuit, a cure, or political action. But whatever the merits of the cause, the fire is stoked primarily by the need to alleviate the parent’s unbearable burden, which is not necessarily in the child’s best interest.
“You must, must, must remember the seat belt,” Mom scolds Dad, who stands silently nodding. “How could you forget?”
A spate of rhetorical questions follows. Could she trust him ever again? By extension, if my own father can forget my seat belt what about other people to whom my care is entrusted?
“This cannot happen again!” she says repeatedly.
Then Mom’s hard tone turns abruptly to me. It’s in her Republican upbringing to have no patience for self-pity and whining. Look out for yourself. Don’t wait for a handout. She’s always quick with advice to step up to the plate. She keeps an ongoing, or quickly composed, mental to-do list, which she likes to whip out like a gunslinger.
“And Ben,” she says then, “Ben, it’s your responsibility to check if the person with you has forgotten your seat belt. Do you understand? Do you hear me? Ultimately it’s your responsibility. You must always, always speak up. Understand?”
Not yet four, I’m stunned yet struggle to comprehend. I try to take her admonitions as seriously as I can. Speak up. Don’t be shy. Ask for what you need. People aren’t mind readers. You’ve got to speak up. I hear these phrases a lot. Light a candle instead of cursing the darkness. The squeaky wheel, etc.
In those days, the mid-1960s, there are scant resources for my parents to draw on, other than doctors. No support groups. No disability-rights organizations or independent-living centers. No sense of a shared, group identity disability-wise, except perhaps for disabled veterans. Any notion of the disabled as a class of ordinary citizens, a population worthy of civil rights, is years away. The first Civil Rights Act, passed in July 1964, when I’m nineteen months old—two years before my garage accident—applies almost exclusively to Black people, of course. It never occurs to anyone, let alone my parents, to extend antidiscrimination and equal opportunity to people with disabilities. Not like in the early twenty-first century, when we know that some 51 million Americans—or 18 percent of the population—have a disability, making us the single largest minority and thus unavoidably deserving of a voice supported by legislation.
The percentage of disabled Americans in the 1960s is probably smaller, though, because medicine and technology aren’t yet doing such a good job of keeping us alive.
Medicine aside, to survive with a disability involves equal doses of toughness, pluck, and grit mixed with humor, a stiff upper lip, love, luck, and money. In those days, and perhaps still today, you’d best follow the Franklin Roosevelt model: Hide the handicap and its apparatus as much as possible. Minimize them. If and when they slip out, simply flash a winning grin. Use your limitation as a sign of strength and courage, not sorrow, shock, or loss. An emblem of overcoming, of achieving despite all.
But is that best?
To be sure, Mom and Dad don’t exactly realize they’re subscribing to the FDR model. They simply want me to remember I have nothing to fear but fear itself. Yet that afternoon, as Mom lectures me about speaking up and taking care of myself, in my mind I’m still falling down the garage ramp and smacking up against a stark reality: I’m undeniably, unavoidably vulnerable, no matter how much spunk I may possess. My new green wheelchair—a badge of growing up, of going to kindergarten, of greater independence—brings a host of unforeseen risks and burdens.
Everything is double-edged! There can be nothing good without something bad!
I’m not yet four, but I might as well be forty.
It’s not right to call this premature self-awareness a kind of wisdom, though, because it’s simply practical knowledge learned the hard way, an attitude derived from struggle. It’s nothing to be proud of. The wisdom, if there is any, would come from knowing when to use this knowledge of vulnerability and when not to be dragged down by it. And that I have yet to learn.
Once iced, my purple finger continues to throb. It throbs for an eternity. I shy away from using my right hand to draw with. I blame myself a little for the accident. I could have remembered the seat belt.
For a month afterward Mom asks me to check my seat belt, but then she too begins to forget. She does not wallow. I want to get past it even more than she does. Over time I learn to bury, or re-bury, my frustrations and fears. I will not let bumps and barriers make me fearful or reticent. Rather, I remind myself that hardships build character. They make me a stronger person.
It’s a guise I can maintain for only so long.
Perhaps even then I do have an inkling about my life ahead: I can already sense it will be split along two divergent paths—the normal expectations of a son of New York Jewish liberal educated intelligent parents to go out in the world, advance, and take charge of his own actions and fate, and the dangerous, ineluctable fragility of the hopelessly, severely disabled.
To live with this dichotomy between upwardly mobile overachiever and delicate flower with what today is foolishly called “special needs”—to live with myself— I’ll have to learn to navigate between or, better yet, balance, redefine, and integrate these two discrepant identities and potential destinies.
It’s a struggle that continues for the rest of my life.
CHAPTER TWO
DISABILITY AS A SOCIAL CONDITION
1967–1971
“The true story, as is usually the case, had a very small circulation.”
—F. Scott Fitzgerald, “The Curious Case of Benjamin
Button,” Tales of the Jazz Age
I know they are discussing me, but I don’t know why. I can’t hear a word or see them to read body language. They have closed the door. I’m on the outside, sitting in my wheelchair between a beige sofa and a beige armchair in the mostly quiet, fluorescently lit, antiseptic waiting room. I’m nearly six years old, and I have nothing to do.
Why didn’t Alec have to come, to keep me company? Not that he would play with me. My older brother is nothing like me. A thin, spirited boy with straight dark-reddish-brown hair and a gap between his front top teeth, he’s brainy and competitive, likes to play chess and baseball and go bowling. I, on the other hand, have big blue eyes and a mop of unruly
blond hair, an adorable Cupid look. Mom’s friends say they wish they had my curls, which I don’t understand because I hate my hair. I want it to be straight, like I see on TV.
On Saturdays Alec goes to a sports camp while I watch cartoons, and in the summer a sleepaway camp in New Hampshire while I stay home and look for ways to pass the time.
Now, in the hermetic waiting room, I imagine leaping through the big, half-sunny window, kicking past the rattling glass and landing catlike on the street below just in time to chase away a squadron of bad guys. I’d roll on the ground to avoid their gunfire and then grab a loose drainpipe or tree branch and knock them all out till the police come. . . . I can pass a lot of time imagining highly athletic action scenes. But alas, I soon discover it’s not enough time, and my boredom resumes. I can’t hold up a magazine or book, and there’s no table I can get to to roll my toy cars on if I had any toy cars with me. Not that this boredom is exactly an unfamiliar phenomenon. At home, when there’s no school, I complain a lot about having nothing to do. I play with my toy cars and tell myself stories until these activities bore me, too. My parents are always trying to come up with new forms of autonomous entertainment for me, beyond TV. Coloring books, cards, Etch-a-Sketch, Colorforms. If only we’d had computers then! (Perhaps this is why, in 1972, when I’m nine, we become one of the first American families to buy the Magnavox Odyssey video game console, once I demonstrate that I’m able to manipulate the controller.)
Why do I have to go to so many doctors? I wonder now.
In truth, Dr. Spiro is one of my favorites. Every year, before the private parent conference, he examines me and talks to me in a soft, cheerful manner. He asks me to squeeze his fingers, follow his penlight with my eyes, stick out my tongue, feel the vibrations of his tuning fork against my knees and ankles (and tell him when the vibrations stop), and perform other easy tasks to measure my muscles and nerve responses. It always seems to impress him that I’m not stone paralyzed or retarded!
I like the attention. I don’t mind being on display. It’s best if I can stay in my wheelchair and not get lifted onto his hard, narrow examination table and have my clothes taken off. But either way—in my chair or on his examination table, dressed or naked—I try to put on a good performance. I’m famous for my good humor and bravery. I never even cry at shots.
Finally, finally, finally the door opens and Mom and Dad come out and they’re smiling and talking and shake hands with Dr. Spiro, who waves at me.
“So what was that all about?” I ask in the elevator. Dad’s pushing me. I’m facing the back wall but it’s a mirror so that’s okay.
“Just grown-up talk,” says Mom.
Mom is intense and coiled-up inside, like something forceful and beautiful wrapped in a tight package. She’s about a foot shorter than Dad; Dad’s a good six-feet-two-inches, with broad shoulders, though he’s not athletic. One of the things Mom and Dad have in common is a great faith in doctors. To them, medical science holds all the answers. “It’s not so many years since a man named Dr. Salk cured polio,” Mom has told me many times.
I’m not too keen on the idea of a cure for my amyotonia, though. I’m used to my life as it is and any change would be really weird to get used to. I’m not so badly off as many people think I am. I’m not. I’m not like other handicapped kids!
In the car, my chair folded and crammed between the front and back seats, Dad driving, Mom tells me more. We always take the car to Dr. Spiro’s because his office is in the Bronx or Queens or someplace like that. “Dr. Spiro is pleased with you. He feels you’re doing fine.”
“He always says that,” I say, even though it feels good to hear.
“He sees almost no change from last year, which means your amyotonia may be stabilizing. He says it’s now called spinal muscular atrophy. You’re not losing strength, and you should stay the same your whole life. You know there’s no cure still, but you’re not getting worse.”
You mean I could have been getting worse? I can’t recall a time when I had more strength than I have today. I’m told I crawled a little as a baby, which I can’t do now, but I figure I was smaller and lighter then. In any case, I don’t remember it. I have no sense of lost capacity. So Mom’s news ripples past me with little impact.
Mom says we know the worst of it now. She sounds relieved as she says this. From behind the steering wheel Dad adds, “That’s good news,” in case I didn’t understand. If it’s such good news, why was I kept out of the doctor’s office? And what took so long in there? Just grownups’ way of doing things, I guess. I look out the car window. It’s getting dark.
If the bad guys pulled up alongside our car now and started shooting, I’d crash out through the window and jump on top of their car. I’d reach inside their window and pull out the driver. If the car started to skid off the road I’d jump off just in time. I’d roll on the ground with guns flaring. They’d run and I’d chase. They wouldn’t have a chance. Even if they thought they had me they’d be proved wrong. Just when the bad guys felt I was down and out, I’d shock them by coming up strong and defeating them all, just like I surprise doctors with my strength and intelligence …
“Of course, you’re not going to get any stronger either,” Mom says then. “There are no treatments for spinal muscular atrophy, none discovered yet anyway, but that’s okay, isn’t it? We’ll keep hoping, but meanwhile we have to get on with our lives.”
I can’t read her face. There’s a sharp turn at the end of the Triborough Bridge. I know it’s coming. It always makes me tip over sideways in my seat, and I silently brace for the inevitable.
***
I can’t stand or raise my arms up high, but at this point I can use my hands pretty well. I can’t cut my food but I do feed myself. I brush my teeth by mostly holding the toothbrush still and moving my mouth from side to side. I have very weak muscles, that’s all. I have full sensation. My arms and legs are skeletally thin; I have scoliosis, which makes my left shoulder lower than my right, and my belly bulges because I have no abdominal muscles to hold it in. Alec sometimes calls me the Pillsbury Doughboy, poking me in my fattest ripples. It doesn’t hurt much and I laugh. I have complete control over my bathroom functions. I’ll be able to father children, I’m told. And there’s nothing wrong with my head, as Mom and Dad frequently point out. Dad went to Harvard; Mom’s a Wellesley grad. Mental ability is important to them.
But when I get sick, it’s very hard for me to cough effectively, and since asthma runs in the family there’s always a lot of concern about my breathing. Normally it’s fine.
I vaguely remember when Mom and I went to Johns Hopkins Hospital for my muscle biopsy, which confirmed the original diagnosis of amyotonia. I was three, and we took the train from New York. Mostly I remember being returned to Mom’s arms after the surgery. I remember shivering and crying. I remember Mom’s blue dress—a welcome contrast to the sickly yellows and pale greens all around—and being enwrapped in its folds. I remember confusion and fear. I remember returning home to Dad and Alec with souvenirs—a brightly-colored pinwheel and my hospital ID bracelet. Alec promptly grabbed the pinwheel from my small hand. Mom and Dad scolded him, and he dropped it onto the floor and marched around the apartment in his pajamas singing silly songs in a loud warble. Besides the pinwheel, what he stole from me was the attention. I was powerless to stop him or to retaliate.
Alec is high energy and prone to what Mom calls temper tantrums. Mom says it’s because I get so much attention from her and Dad. In turn, I get Alec’s attention by doing funny voices and resorting to creative name-calling. I make him laugh.
“Why are you such a freak?” I say with stealthy calm.
“Am I fr-r-r-r-eaky? Freaky! Freaky! Freaky!” “See?”
“At least I’m not a Stu-ball, like you.”
“I’m not stupid!”
But my heart isn’t in it. Maybe I am stupid.
“I didn’t say ’stupid,’ Retard. But I’ll bet you don’t know how much sixteen tim
es sixteen is?”
He seems so impossibly strange. So different from me. So aggressive. And probably smarter. Alec is eight and goes to a good school where he learns French and reads big books. I’m still five and can’t read. I would be going to Alec’s school, L’École Française, on the Upper East Side, but this elite institution refuses to take a kid in a wheelchair. Architectural obstacles abound, and who can predict what effect my presence may have on the other kids? It’s 1968, and it’s still legal to discriminate against the handicapped.
According to government statistics, only one in five handicapped kids is educated in a public school at that time—usually a separate special-ed school. The majority stays home or gets sent off to live-in institutions. More than a million handicapped kids have no access to the school system at all. Many states have statutes specifically excluding the deaf, blind or mentally retarded from public schooling. This despite the Elementary and Secondary Education Act of 1965, which addressed the need for equity for “educationally deprived children,” as President Johnson puts it when he signs it into law. A year later the Act is amended to establish a federal Bureau of Education of the Handicapped and, under Title VI, special funding to accommodate handicapped students. This basically fueled special-ed, not inclusion or “mainstreaming” in regular schools. Not until September 26, 1973—when I’m ten years old and starting sixth grade—do handicapped kids begin to gain the right to an integrated, quality education, with passage of the US Rehabilitation Act. Its Section 504 will prohibit discrimination based on disability in educational facilities that receive federal funding. Two years later, the Education for All Handicapped Children Act will put federal money where its mouth is by supporting state efforts to improve schooling for handicapped kids. It will set no clear national standards, however, and follow-through will be slack. So fifteen years after that—in 1990, when I’m already out of college for six years—the Individuals with Disabilities Education Act will set terms for full integration in public schools of all kids with disabilities, to the fullest extent possible. Soon some six million kids with disabilities will attend public schools, receiving specialized services as needed to meet their educational requirements.
