Part 15 of "Miracle Boy”

BUT FIRST, a few introductory thoughts:
A Harvard pal who's just published a book tells me, "You don't need a blog to sell a book."

Well, I think, maybe YOU don't. But I seem to.

Then again, she makes me realize something. This blog-to-book thing could just be a fad, a passing trend. It's worked for Julie Powell's Julie and Julia, and Sh*t My Dad Says by Justin Halpern, and even, in a way, the I Can Has Cheezburger? series. But that doesn't make it a rule, does it? Surely there's no requirement, no law, that says you must go this route.

And like most media types, the editors I've been encountering are simply hopping on the bandwagon. Just as, a few years ago, they might have said, “Write about vampires!” or, a few years before that, “Wizards! Especially young wizards. That's the thing!" Or a few decades earlier: "Teenagers and drugs!"

Getting into online media is a lot easier than getting before TV cameras. But that doesn't make it right or necessary. Does it?

What do you all think? Is there another, better way to prove I have an audience for my humble words?

I'm extremely grateful for and humbled by the number of you who do read this. But in truth, I'm certainly not generating the kind of numbers that a publisher would want--which I imagine is something daunting like several thousand.

Puh-lease! To do that I'd have to upload something pretty outrageous or scandalous. Something that really has no connection to my book idea at all. So what would be the point?

Is blogging and Twitter stuff and all just a passing fad?

Please share your thoughts.

Meanwhile, just in time for Labor Day, here at last is the next installment of MIRACLE BOY --


. . . I'm not particularly interested in being able to walk. I've invested a lot in getting used to life on wheels. I like having someone always with me, pushing me and protecting me from the world. Walking seems a dangerous way to get around, two legs a perilous perch. Aren't walkers always complaining about sore and tired feet? Being in a wheelchair is part of what makes me stand out from the crowd, so to speak. It's a piece of my identity.



My identity seems to be one thing in these muscular dystrophy ads and quite another in my daily life. My disability may be measurable by Dr. Spiro, but what it means—its impact on who I am and my place in the world—is open to broad interpretation.


The following Labor Day we turn on the TV to watch a little bit of the telethon. To me, it's boring and corny and my mind wanders. Mom doesn't like TV (which is funny since she used to work in TV), and has little patience for the broadcast despite her fondness for the muscular-dystrophy organization itself, but Dad is transfixed. "Oh, oh, oh!" he erupts suddenly with forced melodrama. "Those poor kids! I've got to call right now and pour out my nickels and dimes!"


Then he bursts into a hearty laugh. Alec laughs at Dad's laughing, and I do too. I'm not sure I get the joke, but it has something to do with the schmaltzy profiles of weird, dying kids. Usually Alec and I like to watch comedies like F Troop and I Dream of Jeannie, which Mom and Dad don't watch with us. Another show I like is Ironside, which Mom suggested I try. She thinks I like it because the police chief is in a wheelchair, but that's not really the point of the show, is it? Still, it's a very different image of people like me than what you see on the telethon.


"You shouldn't make fun of them," Mom says, reentering the room. The TV is in Mom and Dad's bedroom, and she's come in to get something from her drawers. "Just because they're not like Ben doesn't give you the right. It's a good cause and it just might help Ben one of these days."


Dad says he's sorry and didn't mean any harm. "I know it's important," he says from the phone. He's gotten up from their king-size bed to call in a donation. They're not like Ben. That's what Mom said. That's what I hear. It's been the going line for a long time. When people treat me like I am one of those pathetic dying kids, when strangers feel sorry for me, it's funny in both senses of the word—odd and humorous. On occasion little old ladies offer to buy me cookies, and my parents won't let them. Mom says I shouldn't feel sorry for myself and shouldn't encourage other people to either.


So why, I wonder, does she defend the telethon? It does bring images of kids in wheelchairs into people's homes, instead of maintaining the status quo of unsightliness and shame. But it certainly doesn't make them look good or competent or equal. It doesn't glamorize them. It offers them up covered in a syrupy goo of sentimentality.


And if those kids aren't like me—and they aren't—then why does Mom say the Muscular Dystrophy Association helps families like ours? What's it got to do with me? I don't have muscular dystrophy. I'm not going to die from my spinal muscular atrophy—that's what Dr. Spiro says, anyway. I've outlived the dying phase. I don't see how the pathetic spazzes on the telethon have anything to do with me except for being in wheelchairs.


No, I definitely don't want to be confused with those kids. I don't want to feel sorry for them, either. It's too depressing to bear, and I wonder if it's real anyway, if those kids are as bad off as they say or if they're actually like me and the telethon is just telling people to feel sorry for them. In any case, I'm brought up to keep moving forward, never to pause for pity. Pity is useless, the enemy of self-esteem and industry.


Mom always says I can be anything I want when I grow up, and I believe it's true.

***

Part 14 of "Miracle Boy”

Two weeks later my photo appears in the Daily News, another paper my family never gets but we do this time. I don't pay attention to the words under the picture, but Alec tells me it says Santa cares about Jerry's kids. I have trouble understanding the phrase "Jerry's kids" because, for one thing, I've never met Jerry. I'm even invited to appear in the New York studios during the next Labor Day telethon, but still never meet Jerry. I meet the hosts of TV's Wonderama, Sonny Fox and Bob McAllister, at a later fund-raising event, but that's about as exciting as it gets.


When I'm eight, I pose for a full-page magazine ad "standing" in uncomfortable leg braces under the caption, "If I grow up I want to be a fireman." If? My life expectancy is normal. Mom and Dad and Dr. Spiro have told me so. Sure, I want to be famous but don't spread lies about me! Besides, I don't want to be a fireman. It's someone else's boyhood fantasy, someone who can walk and climb, perhaps, but not mine. I want to be a superhero, a police detective, a starship captain, a brilliant scientist like Dr. Quest on Jonny Quest, but never a fireman. I keep my fingers crossed behind my back as the camera clicks. I visualize a secret laboratory and computerized panels in an attempt to communicate by E.S.P. my true desires. Afterward I tell Mom I want to quit being a poster child. She asks if I'm sure but offers no further objection.


The truth is, I'm beginning to recognize that I'm not particularly interested in being able to walk.

***

For Paul Longmore, in memoriam: Part 14 of "Miracle Boy”

This next, short passage is dedicated to my good friend and guru Prof. Paul Longmore, who I've just learned died yesterday. Suddenly, unexpectedly. He'd become a sort of celebrity in the disability-rights movement, but he was nothing if not unfailingly friendly and personable and supportive and warm, too. I had read of him before I'd met him. That was 20 years ago or more. He was a historian and polio survivor who educated me and hundreds of others about disability history--the role of people with disabilities in history, perhaps I should say. He imparted a sense of shared culture and pride, and a sort of vision for the future. He was also a pal, a wit, a provocateur. He coached me through my first op-ed submissions and media appearances. And so much more.

Forgive me if I'm rambling. I'm still in shock.

For more about Paul, see the links at
http://lflegal.com/2010/08/paul-longmore

http://notdeadyetnewscommentary.blogspot.com/2010/08/tremendous-loss-paul-longmore-has-died.html

http://www.facebook.com/profile.php?id=693073084

I'm sure that if not for Paul I would have never been able to face let alone articulate the complex issues that characterized my life. Here, then, is a new installment of what Paul has wrought...

***

I'm always required to articulate my wishes and needs, can't just act on them. I'm forced to plan ahead. And I internalize this self-discipline. Impulsiveness is drained out of me! Without realizing, I come to depend on precedent—whatever worked before should work again—because I can't trust in winging it.


Later in the school year, one of my extra special friends invites me to her apartment to play. A smart, petite girl with long, thick black hair, Joanie lives only a few blocks away. Her mom comes to escort us. Which means she's going to push my wheelchair on the sidewalk—but first, down the school steps. Joanie's mom doesn't look physically strong, yet I bravely give her instructions. I can feel her hands shake as she clutches the handlebars of my wheelchair. One step at a time. We get almost all the way down without incident ... until she slips. I fly out of her hands and bound down the hard marble stairway—k'bump-k'bump!—to hit the bottom. I'm facedown, my chin on the lowest step, my wheelchair on top of me.


Mr. Martinez, the school's muscular and jovial maintenance man, is there, leaning over me, trying to pull me up. It's hard to talk with my chin pressed against the bottom step, but I know words are my strongest asset and best defense. Mom has drilled that into me over the years. I manage to say, "Open the seat belt first."


The only Walden staffer not called by his first name, oddly enough, Mr. Martinez bends down to make sure he understands. I can smell his sweet cologne, and I'm grateful. It's important he understand me. If he pulls the wheelchair up without unbuckling me first, I'll twist an ankle. He reaches under me to unfasten the belt. Released from the chair, I slide into a slightly more comfortable position on the floor. He is then able to lift me bodily—like a groom carrying his bride over the threshold—without twisting my ankle, and carry me up the steps to a sofa in the school office. Someone else brings my chair. The school nurse looks me over, calls Mom. Joanie and her mom stay near. I'm in no pain, but the wait for Mom seems very long.


Finally she's there. The play date is canceled. No other harm done. You become used to wheelchair accidents.


The next time Joanie and I get together it's at my apartment.

[For that naughty story, tune in again in a few days...]

Part 11 of "Miracle Boy”

On a half-cloudy November afternoon a girl named Carrie crawls across a classroom tabletop toward me, grinning. Bony and high strung, with long black hair she's always tucking behind her ears, one of many ticks, she's a friend but not a member of my Club. I call my group of best friends a Club, a restricted club, and though it has no benefits other than wheelchair-pushing prerogatives, the other kids seem to like being members. "Hi, Ben!"


"Carrie … what're you doing on the table?"

She inches closer. At the edge of the table she says "hi" again. Then she's practically in my lap. She reaches out and begins unbuttoning my navy-blue corduroys and unzipping my fly—

"Carrie!" Judy yells from across the room. Carrie's white-hot face falls like a startled soufflé as she looks up, unhands my pants. Judy marches over. "Back to your seat!"

Silently, Carrie crawls away. Judy steps closer and closes my pants. No more is said about the incident, and I laugh. Later, when Mom comes to pick me up, Judy tells her what happened. They talk in soft voices. On the walk home Mom tells me to let her and Judy know if anything like this occurs again. Some children have a hard time accepting my handicap, she says. That's not so, I say, not in this case. Mom says she understands it was just play, but still. I say okay, but I'm lying. I don't want to tell Mom or Judy or anyone else if it happens again. If I commented on all the odd things people do around me, I'd never shut up.

For instance, I never tell about Quentin. He's a long-haired, pale-skinned, rangy boy with a taut, satanic grin who frightens me. It's not merely his appearance. It's something about the way he looks at me, or doesn't, with his fanatical eyes. I try ignoring him. He's one of the reasons I surround myself with friends, as a defense. Quentin pays us no mind, and at first I congratulate myself on a strategic victory. All goes smoothly, but only for a time.

***

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!]

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.


###