Miracle Boy Grows Up (3 page)

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 times 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.

Though not held to the same standard unless they receive federal funds, private schools will gradually try, at least, to follow the example of their public counterparts.

Mom and Dad are way ahead of their time in refusing to have me segregated. In fact, they raise me in isolation from other handicapped kids. Or rather, they protect me from them. I don’t want to be around other kids like me anyway, mostly because they are
not like
me. At least I don’t see myself as being like them. I figure if I’m being separated from them, there’s got to be a reason. There’s got to be something wrong with them. They must be spastic, talk funny, and drool. I’m certain they dress badly, have choppy haircuts, and sometimes smell bad. I don’t know for sure because I haven’t really been around other handicapped kids, but you kind of pick up impressions.

“Handicapped” is the word my family uses—the
polite
word, that is, as opposed to “crippled.”

Dad is editor of
GQ
magazine, which he calls
Gentleman’s Quarterly
. Mom worked for the producers of a TV program called
Playhouse 90
on CBS before Alec was born. They’re modern thinkers. In a time when it’s widely accepted that even the best parents can’t easily cope with having a handicapped child, or wouldn’t want to, Mom and Dad go against the grain.

Yet every now and then Mom wonders if the kids who are warehoused in these special-ed ghettos develop a sense of camaraderie, of shared frustration, that I’m missing. She says being with these kids might provide me with an “emotional support system.”

“Oh puh-lease!” I say.

“Don’t be such a smart aleck! Sometimes people need help with emotional issues. It can’t be easy being different. Being you.”

“But I don’t have those kinds of problems. I’m fine.”
Smart aleck
, I’m thinking. Yeah, my brother Alec
is
smart. But saying anything like that will make Mom angry. Or angrier.

“Okay. Well, maybe talking to a psychologist sometime is something you’d like to try. Just to talk about what it’s like being you. They can help you sort out your feelings and—”

“That’s worse! I’m not crazy. I’m not sad. And I don’t like other handicapped kids. They’re gross!”

“How do you know that, dear? They might be just like you. You certainly share the problem of getting along, of confronting the non-handicapped world around you.”

Confronting? “I know how to fit in.” I say.

She says that’s terrific and she’s proud of me. For her, being properly socialized is half the point of keeping me mainstreamed. “It’s important to learn to get along with others, to look nice and behave attractively, if you want to get anywhere in the world.”

“Ai-yai-yai
, Mom!”

“I don’t make the rules, that’s just the way it is. We all have to face it.”