Part 10 of "Miracle Boy”

And so we return to "Miracle Boy Grows Up."  Here's the next installment --

Walden's old location, at W 88th Street & CPW, courtesy http://www.thecityreview.com/uws/cpw/cpw279.html

“…a high-rise apartment building at 279 Central Park West that replaced the Italian-Renaissance-palazzo-style Progress Club that was subsequently converted into the Walden School.”

I start first grade at the Walden School, on West 88th Street. It's a regular, albeit progressive, private school with a liberal admissions policy. I mingle with kids of all colors, many scholarshipped, many others from the creative elite of the Upper West Side. As the only wheelchair-riding student, I'm a pioneer of sorts. It's not exactly wheelchair accessible—each morning Dad has to schlep me, in wheelchair, up a small flight of steps at the entry, and every afternoon Mom hauls me back down again.



One evening I overhear Mom and Dad talking in the kitchen. They are grateful for Walden. Dad says he isn't sure about its prestige but Mom says it will be fine. Best of all, she says, Walden doesn't see me as a typical handicapped kid. Dad agrees. It's making an exception for me, he says.


Judy, my new class teacher—a tall, slender woman with dark hair and warm eyes as expressive as a cartoon character's—quickly makes accommodations. For example, at the end of the first week she gathers the entire class in a circle and introduces me. Just me! She explains why I use a wheelchair and then says something funny:


"Would any of you like to touch Ben's wheelchair?"


If they touch it, she explains, they won't be afraid of it. She is making a kind of case study of me, testing the concept of mainstreaming for her master's thesis.


I'm startled that anyone would be afraid of my chair. Yet right away a few hands shoot up, then more. Soon I'm surrounded by grubby eager fingers. Many of these kids quickly become my new best friends. Within a day I'm appointing a trusted subset to be my first choices for wheelchair-pushing. We make a game of it—they compete to be my Chief Wheeler, and I choose the winners. "You were totally accepted by your classmates because you were so cute and so bright, just like everyone else, except you were on wheels," recalls Judy, my teacher, four decades later.


At the end of the semester she notes on my report card that I have "leadership skills." If so, it comes from necessity. It's a survival skill, a form of gentle manipulation that maybe all handicapped kids learn. Taking charge. Putting people at ease.


One kid, however, isn't so easy to figure out.

[For more, come back in a few days ... and thanks for reading!]

My Reflections on the ADA Anniversary

If you missed my NPR broadcast on Monday, July 26, you're not alone. I missed it, too.

Local stations sometimes cut away from the program for local news or special reports. For some reason, my commentary suffered this fate at many NPR affiliates.

It's online, of course.

Anyway, here's the original, long version--the one I reduced to fit NPR requirements.

(Fans of "Miracle Boy Grows Up"--and, yes, there are some--will have to wait a few days for the next installment. But I promise I will keep posting manuscript excerpts.)

The 20th Anniversary of the Disabilities Act: A Personal Reflection

by Ben Mattlin

When I was in school--even when I graduated from college and first looked for a job--it was legal to discriminate against people like me.


That's because I was born with a neuromuscular condition called spinal muscular atrophy. I've always used a wheelchair and my hands are weak as a baby's. My parents told me I could be anything I wanted when I grew up. But that wasn't quite true.


When the Americans with Disabilities Act was signed into law on July 26, 1990, I was 27. Yet I had only recently become fully sentient of disability discrimination.


I was too young to realize what was going on when my parents struggled to find a decent school willing to accept a handicapped child in the 1960s and 70s. My able-bodied older brother's schools wouldn't have me. I assumed it was because I wasn't smart enough.


Then he and I attended Harvard together. Coincidentally, my freshman year, 1980, was the deadline for institutions like Harvard to become wheelchair accessible, under the Rehabilitation Act of 1973, which became a kind of model for the ADA. I recall a different college's admissions officer had confessed it would be "damn difficult" to meet my needs, presumably to discourage me from applying, while another's actually accepted me before I applied, presumably to discourage me from suing.


I was a reluctant pioneer, but what choice did I have? I appreciated Harvard's nascent efforts to render its sprawling, cobblestone campus wheelchair-friendly; then I was barred from having roommates. One dean gave this explanation: my presence might impair the other students' collegiate experience. Never mind how the isolation and loneliness of this blatant segregation could sour mine.


It sounds shocking to me now, especially in light of today's assimilated schools. But in those days, full integration of the disabled seemed as impossible as allowing gays in the military. I accepted the situation as I did Boston's long winters.


After graduation was when the bitter sting of discrimination really sank in. No one would hire me, even for an unpaid internship. Worse still, potential employers seemed interested till they met me in person, wheels and all.


Eventually I landed a freelance writing assignment for a weekly business paper. I typed slowly, with the few fingers I could use. My piece ran on the front page. Other assignments followed, and my name got around. I began amassing a thick portfolio of tear sheets. I became an early user of voice-recognition software, which greatly accelerated my productivity. Nevertheless, I never received a full-time job offer.


One magazine editor who had published many of my articles invited me to interview for a staff opening. It was our first face-to-face meeting. "How would you make photocopies?" she asked after a time. "I mean, if we hired you, you'd be here to help us, not for us to help you." Needless to say, I didn't score the position.


There were no regulations then, no codes of conduct for such awkward situations. The ADA changed that. No, it didn't get me a job. I'm still an under-employed freelancer (which these days doesn't sound quite so bad). It did, however, provide cues for differentiating between essential and nonessential job tasks and identifying a "reasonable accommodation" from an "undue hardship." In short, it created a new way of thinking.


If a restaurant or store I want to go in has a six-inch-high threshold and no ramp, I now have a constructive way to address the problem, a mode of discourse beyond cursing or crying.


Perhaps most of all, though, the ADA shed a bright, exacting light on the unnecessary, unfair, and often unspoken disparities I and millions of others were silently abiding, resenting and, at best, working around. By recognizing our shared experiences of injustice, the ADA gave us more than legal recourse. It gave us validation and hope.


Today, its impact can be seen everywhere: city buses with wheelchair lifts, buildings with signs in Braille, TVs and DVDs with Closed Captioning. Able-bodied strangers are no longer likely to stare at me, mouths agape, either. Most heartening of all, young disabled people I know are growing up with a marvelous sense of belonging, entitlement and pride I never had.


Yes, we still have a long way to go to be fully valued in society. The ADA hasn't resolved all the inequities. But in redefining the terms of disability, it's made us visible, active members of society. I believe by now everyone knows we're just another aspect of human diversity, and we're here to stay.

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Part 9 of “Miracle Boy”

Welcome, NPR listeners!

I'm glad you've followed me this far.  This is my humble blog, where I've been pasting excerpts from my memoir. Please click "follow" and possibly follow me on Twitter, too, because if I get enough followers by year-end I have a chance of actually getting this book published.

We can do it together.

Also, take a look at my YouTube promo. There's a link on the right.

If you have any questions, feel free to e-mail me via the other link on the right. Or better yet, post comments below.

Without further ado, here's the next installment of "Miracle Boy Grows Up: How the Disability-Rights Revolution Saved My Sanity" --

Part 8 of “Miracle Boy”

The video clip is going strong, with 65 viewers over the past three days. And only about half of them are me!

Joking. I think. Not sure how YouTube counts these things.

If you haven't seen it, you don't know what you're missing. (How's that for an obvious statement?!) So click here already and take a look...

http://www.youtube.com/watch?v=i0eyffGTHLU

Here is the next little installment of my project, and it's a fun one. Then, on Monday, comes my newest NPR Commentary. I'll post a transcript here just as soon as it's legal to do so.

Gardez la foi!

MIRACLE BOY GROWS UP, part 8


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 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. There's nothing wrong with my head, as Mom and Dad frequently point out. Dad went to Harvard, and brain ability is important to him. 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 bright-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.

***

Part 7 of "Miracle Boy"

First of all, readers, I have finally posted a promotional clip for this book proposal. It seems to be necessary these days for authors to double as pitchmen (or pitchwomen).

http://www.youtube.com/watch?v=i0eyffGTHLU

Now, on to the business at hand -- the latest installment of MIRACLE BOY GROWS UP ... (O, that I were in your shoes, encountering these words for the first time!)

***

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.


***

Part 6 of "Miracle Boy"

A friend has a clever blog about, most recently, idiotic comments from strangers about wheelchairs--specifically, about YOUR wheelchair. The one you're riding in. The one you depend on.

Anybody who's ever used a chair or been close to someone who does recognizes the kind of inane things he's talking about. Things like: "Do you need a license to drive that thing?"

Why, he asks, do strangers never cease to make such strikingly uncreative, annoying comments toward our wheelchairs?

Of course, such comments are not unique to wheelchair-users. Most distinguishing characteristics--tallness, shortness, large nosed-ness, other well-endowed body parts (!), excessively curly hair--are probably prone to it. Names that sound funny to people who aren't used to them are frequently made fun of, too. It's no big deal. There are more important issues to complain about, more urgent battles to fight.  Right?

But still, there it is. A small piece of what's sometimes called "disability culture."

So I'll refer you to Mark's blog, and then get on with my story...

Disability As A Social Condition: 1967-1971

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.


Why do I have to go to so many doctors?


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.

[Stay tuned, dear reader…]

Part 5 of "Miracle Boy"

Went to the NPR West studio today to record a new commentary. Several folks there greeted me with, "Welcome back!" A nice feeling.

Listen for the piece during Morning Edition on July 26.

Meanwhile, here's the next installment of "Miracle Boy." It's short, so I'm posting it early...

FDR: a model for so many of us

To be sure, Mom and Dad don't exactly realize they're subscribing to the FDR model. They 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 40.



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.


So 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.


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