Friday, July 30, 2010

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
“…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!]

Tuesday, July 27, 2010

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.


Sunday, July 25, 2010

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" --

Friday, July 23, 2010

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...

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!


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!"


"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.


Tuesday, July 20, 2010

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).

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.


Friday, July 16, 2010

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…]

Wednesday, July 14, 2010

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.


Tuesday, July 13, 2010

Part 4 of "Miracle Boy"

The picture is irrelevant. It's Microsoft's clipart. But I figured I needed some illustration here, and it might as well be one that could draw in a few curious readers. (I considered uploading nude photos, but I didn't want to pander!)

Anyway, here's the next installment of "Miracle Boy" Grows Up...

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 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 seatbelt, 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 seatbelt. 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 19 months old—two years before my garage accident—applies almost exclusively to Blacks, 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 21st century, when we know that some 51 million Americans—or 18 percent of the population—have a disability, making us the single largest minority. 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.

Or is that best?


Friday, July 9, 2010

Part 3 of "Miracle Boy"

Here's the next installment of my memoir-in-progress.  Hope you like it!

"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 new, shiny, 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 called 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 boundaries.

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.

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 disappear into my brain. 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.

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.

[Next installment in a day or two, whether you want it or not...]

Wednesday, July 7, 2010

Part 2 of "Miracle Boy": 1962-1968

In 1962, 4 million babies are born in the U.S.—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, privately, in the dead of night.

Even in the 21st 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 mentally 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 accurately, "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?" Till I'm at least seven I'm considered not competent to answer such a question.

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 never walk or stand. On my own, that is. 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. Honestly, it must have been thought up by an able-bodied fitness nut! 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.

[Coming next: my brother...]

Monday, July 5, 2010

Part 1 of "Miracle Boy”: Introduction

I was training my latest personal-care attendant in how to wash me ("first the soap . . . "), dress me ("slide one foot into the jeans leg, then the other . . . ") and lift me into my motorized wheelchair. He was a UCLA student with no medical background, which is just the way I like it. I do not want to be called "the patient."

Nevertheless, while tying my shoes he asked a question that was dangerously close to my tolerance boundary: "How do you stay so positive?"

I feel like I've been called "inspirational" more times than Jesus, Muhammad and Moses combined, but something about his question felt different. My earnest young employee was not commenting about something over which I had no control—the fact that I'd lived all of my then-42 years with a severe neuromuscular condition—but about my attitude, an attitude I had adopted and nurtured, a doggedly honed personality trait, a survival strategy, perhaps. He might have asked the same question if I didn't have a disability.

Usually the word "inspirational" was followed by, "You should write a book about your life. It would be so inspirational for so many people!" No thanks. In fairness, this may be prompted partly by the fact that I write for a living. I'm a contributing editor for Institutional Investor and, until its recent demise, Dealmaker and other magazines for the past 20 years. But please! Let survivors of abuse, cancer or war coax tears from readers' eyes. Not me.

To his credit, my new attendant did not in fact resort to the book spiel. What he did was get me talking, and that's when I realized it. I had reached a level of maturity from where I could look back at my varied experiences and not feel embarrassed. A book about my life would indeed be compelling and gripping. Especially considering the many changes in medicine, technology and disability rights I'd seen.

After all, I was the “miracle” who wasn't supposed to live past 10. Born with a rare form of a rare disease, spinal muscular dystrophy, I grew up in New York City (Dad was editor-in-chief of GQ, Mom a former television producer) and attended regular private schools before there were any laws protecting my right to do so. (Some cities even barred the disabled from appearing in public!) From one of my earliest memories—falling out of my wheelchair into a dark, smelly garage—to learning to use my brain and verbal skills to get what I needed, I always attracted friends and, in contrast to common lore, rarely felt taunted by school bullies. At 10, though, after my parents' divorce, I wrestled with divided loyalties—Dad took better care of me physically, while Mom was more supportive emotionally.

Eight years later I became one of Harvard's first severely disabled wheelchair-using freshmen—if not the first. Then Mom got sick. The next summer she was dead.

After college, I shacked up with my nondisabled, non-Jewish girlfriend and together we headed to L.A., where we got married and, after more than four stressful years in the infertility maze, had two terrific daughters.

It never occurred to me that someone like me wasn't supposed to do all these things. How indeed had I managed? What kept me going?
      [More in two days.]

Sunday, July 4, 2010

"Miracle Boy" Grows Up" (an excerpt & commentary)

A long story in the New York Times today (July 4, 2010) about an Iraqi war soldier who became disabled in combat and is learning to reinvent his life. Okay, that's an oversimplification of a complex, touching article. But at some level it is without a doubt a disability tale--and that's where I come in.

Usually, stories of heroic overcomers turn my stomach. First of all, they are clichés. Also, sometimes it seems that anyone who actually lives a life with a disability is treated as heroic, inspirational, miraculous, and so forth. Perhaps we are, but I like to think that's more because of coping with a world that isn't made for us, doesn't get us or welcome us. We're not amazing simply because of having a disability.

There IS a difference.

Still, injured veterans' stories are pretty incredible. (Injured anyone's, for that matter.) The fact is, disabled veterans have always been a huge, if unintentional, impetus to disability rights. Prosthetics and even motorized wheelchairs were invented specifically in reaction to the sudden swell in the disability population caused by wars.

All of which is a lead-in to this excerpt from my book-in-progress:

    Mr. Snuffles, as I secretly call him, has a musty workshop on the second floor of a walk-up on the Upper East Side. Dad has to carry me bodily up the stairs.

     Once there, Dad lies me down on a vinyl-topped examination table, where I have nothing to do but stare at an assortment of fliers posted on the wall. "Four out of five dentists recommend sugarless gum for their patients who chew gum" one of the signs informs me.

     I wonder what it's doing in a prosthetics and orthotics facility!

     Decades later I learn that the earliest recorded example of a prosthesis is an iron leg made for one Queen Vishpla, an Indian warrior in 3000 BC, who was amputated in battle yet returned to fight again with her new hardware, according to an ancient Sanskrit text.

    Why isn't something like that, emboldening info about the historical importance of assistive technology, posted here?

     … I have a new motorized wheelchair—my first—which is too heavy to get up the school steps, but at home I love to zoom around, especially fun in my building's labyrinthine basement.

     Gary and I play there after school, staying clear of the housekeepers who do laundry and the maintenance workers who have an office down there as we explore the myriad dark passages and commodious storage lockers, pretending we're on a mystery investigation. It's taken me a while to get an electric wheelchair. They've been mass-produced since 1956, when Everest and Jennings rolled the first one out of its California factories, improving upon designs putatively sketched by George Westinghouse in the late-nineteenth century and British engineers during the First World War, then perfected in the early 50s by a Canadian inventor named George Klein, primarily for World War II vets—demonstrating again the connection between war and disability progress.

     The first E & J power chairs were notoriously slow, but in the early-70s they become the vehicle of choice for active quadriplegics—brandished by Ed Roberts and his trendsetting crew in Berkeley. The only reason I didn't have one before is Dr. Spiro, my neurologist, feared it'd make me lazy, make me not use my arms and build arm strength. Now we know I can't build up my muscles, so he finally wrote the prescription.

     The first day I get the motorized wheelchair home I chase Alec around our apartment. I'm not a good driver yet and keep crashing, leaving tell-tale gray scratches on the white walls.

(More later.)

Friday, July 2, 2010

Out of the mouth of babes and sucklings hast thou ordained strength... (Psalms 8:2)

Well, dear reader, I'm clearly not a good blogger (bloggist?).

If done right, a blog should provide new information, or a fresh perspective on old or little-known items, with links to relevant Web sources. You think?

It should incorporate words and pictures and maybe even video clips. Right?

Most of all, it should be updated.  Frequently. In fact, the more often, the better. No question.

If all that sounds like a full-time job, that's because it does to me, too. A full-time job without pay.

Which is why this humble blog-manque is so often neglected. Or at least it's my excuse, and I'm sticking to it.

But then, suddenly, the world changes.  Or a portion of it.  My portion. 

Yesterday, I got word from a publisher that he's interested in publishing my book except I don't have the "platform" to push it through his bosses and bottom-line-oriented bureaucracy. Platform, in this case, is really a kind of launching pad--a promotional launching pad to spur book sales to soar. Or as my younger daughter put it recently, "You're not famous, Dad? Why should anyone want to read about you?"

I figure I need a ramp to my platform!

So rather than my traipsing through downtown in the nude, or some other pointless act of sensationalism, this publisher suggested I build an online following. He gave me 6 to 9 months to generate readership--active, dedicated readership--for this, my blog, and/or my Twitter musings. After which, he said, he would like to take a second look at my book proposal.

The thing is, he's not the first potential publisher to say something like this.

The good news is, I don't have to rewrite my manuscript to get it taken seriously. My writing style and content are not the problem. But I have to work harder at this blog business.

If you've gotten this far, kindly click on the FOLLOW button to the right (that is, if you haven't already).

For those of you who have already done that, my humblest gratitude!

So, onto the problem of how to keep feeding my blog while maintaining a career as a freelance journalist ...

Again from the mouth of babes (no offense) came the wise answer!

My elder daughter (and 10 no-prize points to whoever can explain the difference between "elder" and "older") suggested, "Why don't you 'leak' small segments of your book? Just enough to whet readers' appetites..."

And so I shall. Beginning Monday. Stay tuned...