Part 33 of "Miracle Boy"

Under deadline pressures, so without further ado –

***

She says she can see my room out her window, but I don't see hers.

She has a tumor removed from her ovaries. She's forty-three, scared because ovarian cancer is what killed her mother. I'm convinced she's worrying over nothing. She usually does. Mom calls her operation a "procedure." What we don't know is it'll be the first in a long series of procedures.

One afternoon, accompanied by a nurse, Mom drags her I.V. over the bridge connecting the two buildings and visits me in pediatrics. She's weak and pale but tries to be cheerful, and I do too.

We're also unaware that, that same April, disability activists are protesting at federal office buildings in ten major cities. The Rehabilitation Act of 1973 still has not been signed into law, four years after Congress passed it. Specifically, the guidelines necessary to enforce Section 504 of the Act, which bars discrimination against people with disabilities in federally funded programs, haven't been finalized. Without those guidelines, the nation's first disability-rights legislation is rendered meaningless.

Protesters believe newly installed President Carter may be sympathetic to their cause, but so far he's done nothing.

The San Francisco demonstrations are the largest. Scores of activists occupy the local headquarters of the U.S. Department of Health, Education and Welfare, the body responsible for the guidelines. They camp out for twenty-five straight days and nights, sleeping in their wheelchairs or on the floor. They share urinals, catheters and personal-care attendants, bathing in front of each other without shame—most are used to being undressed in front of others.  I know the feeling. 

These activists are inspired by the Black civil-rights movement, of course, but more than that, they have nothing to lose and nothing else to do. They're unemployed or, in many cases, barred from all but a handful of mainstream schools. Having benefited from the latest medical advances, they've survived crippling, once deadly, diseases and accidents to live active lives with the aid of crutches, power wheelchairs, portable ventilators, guide dogs, sign language and other modern marvels. Many don't have their own homes or families to tend to. They feel they've been patient long enough.

At the end of the month the protesters are victorious! Joseph Califano, Carter's H.E.W. secretary, finalizes the regulations and the president signs them into law. A modicum of rights, at last! Power to the people!

It will prove only the first battle of a long war, of an ongoing revolution, but it's one from which I'll personally benefit very soon. For all institutions that receive federal funds are now required to become accessible by 1980. The year I start college.

***

Part 32 of "Miracle Boy"

 

Happy Thanksgiving to all!

I've been working on a new NPR commentary for the impending holiday season, and have set myself a personal goal of doing even more next year than I had the pleasure and privilege of doing this year. We shall see…

Meanwhile, my financial journalism continues apace (whatever that means).

And one of the three publishers passing judgment on my humble book proposal has given it a thumbs-down.  Yet I shall remain hopeful about the other two.  They have the new-and-improved version, which the naysayer didn't.

In other news, the excellent writer Mary Karr has come down hard on recent statements by controversial writer James Frey, author of A Million Little Pieces.  Who, in New York magazine, said something recently about the blending of fiction and nonfiction in modern literature.  Karr does not believe in confusing the two.  "Hey Frey: if you can't tell the truth and you lack imagination to make up stories, maybe scribbling just ain't for you," she proclaimed to her Facebook fans.

She's right, of course.  But honestly, memoirs like hers (Lit, Cherry, The Liars' Club), and the one I'm working on, are not biographies nor works of journalism.  They should not be taken for reporting indisputable facts.  A memoir is necessarily subjective--the author's version of events.  Right?  So what you read here is my take on what I remember … thus, it's highly filtered. 

And to make it more readable, I do try to use some of the techniques of a fiction writer.  So the pacing is artificial, that is, contrived as a work of art.  What's included and what's left out is artificial, too, in the sense that the decisions are based on my own sense of what's relevant or interesting.  But the situations depicted, and my experiences of them, are completely based on fact.  I haven't made up any characters or scenes.  Though, of course, anyone else who lived through these events probably has a completely different memory, interpretation, and story.  Does that make sense?

Anyhow, without further ado, here's the next installment –

###

It's the autumn of 1976. Jimmy Carter is running for president against Gerald Ford. I'm convinced Carter will lose, because who would vote for a Southerner with blow-dried hair? "Shake Your Booty" by KC and the Sunshine Band is the top hit. I'm trying to be into what's happening now, and swear off talking about Star Trek as if it's real, though some of the popular disco music leaves me cold. I won't pretend I'm Chief Ironside or even the much cooler Steve McGarrett anymore. I spent last year signing "Steve" to my homework papers at Walden, such as there were homework papers at Walden.

On the other hand, I don't want to be just Wheelchair Guy either. I like having a counter identity. If I can do something else—such as make my new classmates laugh—perhaps I can go from Wheelchair Guy to Funny Wheelchair Guy and, in time, to just plain Funny Guy.

I start doodling cartoons between classes and sometimes during classes. A few weeks later, the student paper publishes one. It's a caricature of Carter, Ford and—what the hell—Nixon at a fictional debate. Nixon says, "I am not a crook." Ford says, "New York, drop dead." And Carter says, "Anybody want a peanut?"

I'm doing my best, but I'm fighting impossible odds. I'm still fat and wearing an uncomfortable back brace that makes my clothes fit funny. I take to holding my bathroom needs till I get home, on the assumption I'm too old to ask teachers for that kind of help. On occasion I have accidents, concocting clever excuses and misdirection. "I spilled my drink!" Or "What's that smell? Did my chair run through dog doo in the park?"

Soon medical imperative blows my cover. The surgery. 

***

My curving spine has overpowered the pinching back brace. My weak muscles can't keep up. My back has nearly folded over itself. I look more like a beach ball than an almost-fifteen-year-old boy. And the orthopedist says the situation has become critical. Without surgery, and soon, breathing will become increasingly problematic as my body closes in against my lungs. I'll become unable to sit in a chair within five years. My parents have insisted on getting second opinions. Now three of New York's top orthopedic surgeons agree.

We pick Dr. David Levine of the Hospital for Special Surgery, which is on the Upper East Side. He seems the most responsive to questions, even from me, and I like his sunny manner. His penchant for bowties is either a plus or minus—I can't decide.

To prepare for next summer's surgery, I spend the better part of spring break in the hospital for tests. I'm given a private room in the pediatric ward. Disney characters are painted on the walls. Come on, I'm nearly fifteen!

Out my window you can see the East River. The hospital is on prime real estate! Mostly I like the small Sony Trinitron color TV on a pivoting gooseneck over the adjustable bed. I can't change channels myself, but at least I can pick what and when to watch and ask a nurse for help.

For five days I undergo a litany of tests—breathing tests, blood tests and so forth. I try to find the bright side, look at the nurses as sex objects, because that's what the cool guys at school would do, but I'm too busy taking it all in and being bored to float any pleasure.

While I'm there, Mom checks into New York Hospital, which is adjacent.

Part 31 of "Miracle Boy"

I have a second chance at reinventing myself and finding happiness. Rudof Steiner starts one day later than Rippie. Why not give it a try, too? My parents agree. What I didn't realize is they never actually told Steiner about this second change of plans. They didn't have time.

At Steiner, the brouhaha soon settles down and I'm parked behind a desk at the end of the front row. Dad leaves. I struggle to learn the name of the girl on my right. She's pretty, and I figure if we're going to be neighbors we might as well be friends. The new me is as shy as the old me, however. The new me is still a work in progress.

The teacher re-begins his remarks. He's a broad-shouldered, slightly potbellied man, and his fair locks hang diagonally in a … well, a Hitleresque slant toward his bushy eyebrows. I've missed the part where he gives his name.

At lunch the other kids make a special effort to welcome me. "So what're your hobbies?" I'm asked probably six times. I become self-conscious about their solicitousness, but seize the opportunity. "Our teacher—what's his name?"

My question elicits giggles. A girl with flaming red hair and an expansive smile says, "Isn't it funny? German, I guess."

I wait. Then, in a hesitant, enchantingly soft voice, she says, "A Hard Penis." At least that's what I think she says.

I nod knowingly, or try to as best I can, betraying no embarrassment. My head doesn't actually move much, so I sort of raise and lower my eyebrows, playing it cool. I'm good at using facial expressions to my advantage.

On the third day I have a pressing question about a homework assignment. I can't raise my hand. I raise a finger, but will have to call out. Maybe I can get by simply saying "Sir." No. Too formal. I decide to be brave. Perhaps if I say it fast enough, emphasizing the initial syllable and slurring the rest, I can get by. I'm good at fooling people. "Uh, Mr. PEEEN-ih—?"

He looks over. No one chortles. It worked!

Maybe his name really is Mr. Penis.

There are a lot of funny names here. Kids called Almira and Bethea ... at least I think I have those right. I hurriedly ask when book reports are due, and we go on to a lesson in recitation. Recitation is big here. Every morning starts not with the Pledge of Allegiance but with Steiner's own Morning Verse, which I soon learn. "I look into the world, in which the sun is shining, in which stars are sparkling, where stones repose ..." The class speaks it in unison while standing up—slowly, reverentially, like some secret, ancient chant.

Very spooky.


English class begins with two passages we're supposed to memorize. "In the beginning was the word ...," Mr. Penis enunciates for us to repeat. What happened to, "In the beginning God created the heavens and the earth"? I'm in the presence of goyim, but this isn't Connecticut and they're in the minority.

Then, a few days later, comes: "Respect for the word is the first commandment in the discipline by which a man can be educated to maturity—intellectual, emotional, and moral. Respect for the word—to employ it with scrupulous care and an incorruptible heartfelt love of truth—is essential if there is to be any growth in a society or in the human race …"

I sort of like that one. I've always had respect for scrupulously employed words! I become engaged in the lesson, and soon realize this oddly named teacher and eccentric, quasi-cultish school are growing on me. I made the right choice, coming here, staying in New York. I never think about moving to Stamford again.

Mr. Penis writes the name "Dag Hammarskjold" on the board. I only know it from the plaza near the U.N. Someone then asks him to spell out his own name on the chalkboard. Thank God! Why couldn't I have done that?

He writes: EKKEHARD PIENING.

***

Part 30 of "Miracle Boy"

So far, all the men at this Steiner high school wear the drab, narrow-lapelled suits of a previous generation; the two women in evidence are in navy pencil skirts and prim cream-color blouses that've seen better days as well. An odd sort of shabbiness, considering the affluent location, pervades. And not the hippy-dippy grunginess I'm used to from Walden.

My homeroom teacher—young, blondish, in a blousey gold-color dress shirt, conservative polkadot tie, and comfortable shoes—interrupts his presentation to the class when I'm at last wheeled in. "Yes? Hi! Mattlin? Are you in the right class? Ninth grade? It's just that we weren't expecting you ..."

No shit? I smile and remain silent. The other kids—roughly fifteen in all, I estimate—are staring at me from behind identical front-facing desks. (I'm relieved to notice no ties or blazers, like Walden, not like Alec's school.) Most are girls. Much whispering ensues between the teacher and the swarm of 1950s administrators and others who have gathered. The source of the confusion is apparent, to me at least. I am the cause of the commotion. I'm supposed to be in Stamford.


Yesterday, I awoke to the darkness of 5:30 AM in Dad and pregnant Barbara's West End Avenue apartment (they moved from Brooklyn several years before, when the strain of walking up two flights became too much), got in Dad's minibus-sized red Checker sedan—which had room for my motorized wheelchair, if I ducked my head—and did the long reverse-commute to Connecticut. The house they're having built in Stamford isn't finished yet, and I don't want to miss the first day at Rippowam High School.

Rippowam turns out to be a sprawling suburban campus of about a thousand students, quadruple the population of Walden's high school and about fourteen times Steiner's, spread out on a single floor. It's a public school, but it's supposed to be a good one. It's also pretty accessible. I roam from class to class in my motorized wheelchair, something I've never done before. But I get lost and my chair is slow, so I struggle to keep up. Many of the other kids already know one another ... and look different from kids I've known. Athletic? Outdoorsy? Suburban? Gentile? Something!

What's more, out the windows are trees and grass. You can hear birds, not car horns and sirens. Charlton Heston's monotone resonates in my head: "I am a stranger in a strange land."

When my latest attendant, Kenny, brings me home to Manhattan's Upper West Side that afternoon, I'm depressed with severe misgivings. "How many trees can you stand?" I shriek.

The realization: I am a city boy.

***

Part 29 of "Miracle Boy”...goes to high school

Thanks to all of you who have written to me in response to this blog and other things I've done.

Thanks for voting for items below, and for my first YouTube comment.

(These humble entries are now receiving about 15 views per day, or close to 500 visitors a month. Not bad!)

My proposal is now in the hands of three or four book editors (I've lost count). I've published articles in each of the past two issues of Financial Advisor magazine, and a new one is in the works.

And NPR is awaiting my next commentary, which I'm hoping will run before the end of the year.

But of course, none of this is certain. None of it is money in the bank. Well, a little, but not much money.

In the manuscript segment that follows, we start the final chapter that's completed so far. Honestly, I'm wishing for a book contract to keep me working on it--so far, it's all been on spec--but I doubt not having one can stop me now!

Well, barring further development, here's the next installment . . . .


Dad and Barbara plan to move to a house in Stamford, Connecticut, where there will be room for the new baby. There is great excitement in the air. Barbara is pregnant! The house is being built! It's an opportunity I don't want to let pass.



I've always wanted to live in a house instead of an apartment. Besides, New York City in the mid-70s is depressing, dangerous. What's more, Mom's not as fun as Dad and Barbara, not as upbeat and adventurous. She's been struggling to find a job and a man she can stand. Only I put it in better words when I finally muster the courage to tell her I want to move out and live with them.


"Are you sure?" Mom asks. Then: "Have I been so—? No. Never mind. Um, won't you miss Alec?"


I haven't thought of that. Alec? No, I guess not.


Yet having spoken my fantasy I'm suddenly not so sure about it. Dad is able to do more with me than Mom, better at tending to my physical requirements. That much is true. Yet Mom is more emotionally supportive. Even now, she suggests I see a psychologist to discuss this.


Reluctantly, I agree.


She has in mind a specialist named Dr. Friend. Who could resist?

***

"You'd be crazy to move now!" declares Dr. Friend several weeks later, after I speak my piece. A genial fellow with tufts of silver hair framing ample ears, he sits in a big black leather armchair by the window of his elegantly furnished suite off the lobby of an apartment building on Central Park West, a few blocks down from home. Mom and Dad both promised he wouldn't tell me what to do, just help me make up my mind.


"Is—is that what you think?"


"Look, you're starting high school, which is big. Life is best taken a step at a time. Don't overwhelm yourself, particularly considering your upcoming surgery."


I don't want to think about that.


My scoliosis has become worse to the point of dangerous. The miserable back brace isn't working. I can only put off an operation so long. The sooner the better.


When my attendant picks me up at Dr. Friend's office and pushes me home along C.P.W. on what's turned into a blustery spring evening, almost immediately I decide to disobey the shrink.

Chapter 3: My unfortunate, life-changing incarceration

1976-1978

My first day at Steiner, no one is expecting me. Housed in a converted townhouse on East 78th Street between Fifth and Madison avenues, the school is like a disheveled Old World dowager. It's warm and nurturing yet mothball smelling.


I'm the first and only wheelchair student ever—pioneering, again—and nobody's checked if the elevator is working. It's very old and arthritic, we're told. Like at Walden, Dad has to jerk my chair up the front steps, but we're used to that. Beggars can't be choosers. Inside is another story. We hadn't reckoned on an elevator problem.


The tiny "car"—a cargo elevator, if ever there was one—refuses to move from whatever floor it's on. When someone at last finds it and manages to open the tarnished old gate, my chair doesn't fit inside. I'm about ready to give up, whatever that means, when Dad removes my footrests and finagles till my chair and I are wedged in. That said, there is no extra space for another person to push the buttons, which I can't do myself. So long-legged Dad vaults the staircase to summon the elevator to the third floor. Still the rust bucket won't budge, until—honest to God—someone kicks the door from the outside!


Needless to say, I'm now late for my first class.


All of which gives me plenty of time to size up the people I'm hurriedly introduced to.

Part 28 of "Miracle Boy”

One glorious release from this rigidity, so to speak, is masturbation. Whether kosher or not, I indulge nightly.

I have zero privacy but try to keep it secret. One midsummer weekend I go with Dad and Barbara to the Jersey Shore, where I eat nothing but fried fillet of sole—sole because I believe it fits kashruth and fried because that's the only way I can stand it.

While pushing my manual wheelchair on a quiet path, having left Barbara behind at the motel pool, Dad says, "Tell me, Ben, are you able to ... reach yourself?"

It takes a moment to understand. I resist the giggles. Really, I'm delighted. So nobody's caught on?


Here's how I've been hoping to keep my nightly ejaculations private and undetected: First, I ask to sleep on my back, though I can't actually sleep that way. I ask to have my hands laid flat on either thigh. I say it's more comfortable that way. Then I say goodnight and the light's turned out, the door partially closed. I have just enough hand strength to do what I need ... After, I wait for the spew to dry before calling out to roll over.


"Yes. No problem there," I'm saying as Dad rounds a turn. The Jersey Shore is a sexy place. Lots of skin, and a certain casual attitude. My imagination gets a little carried away. "Now, Dad," I say, "can I ask you something?"

"Fair enough."

"What would you do if I said no, I can't?"

Of course, I'm hoping he was going to offer a prostitute to break me in. A warm breeze blows and seagulls caw. Dad laughs. "It's a good question!"

***

On the long car ride home, Dad asks me trivia questions to pass the time. Literature. World capitals. History. Simple math. I'm a disaster! No, Spain is not the capital of Italy! Boy do I get shit for that blunder. I haven't read the books Alec has, haven't studied the subjects. Blame my weird school. Or maybe I am just dumber. So soon as I'm home I tell Mom I want to transfer for high school. She consults by phone with Dad a few days later, and in the end they don't argue with me. They've seen the problems at Walden.


When it comes to equal access, we learn, schools haven't changed much. It's 1976, and the Education for All Handicapped Children Act has been on the books only a few months. The new law harks back to a 1972 court decision in Mills vs. Board of Education. Not as famous as Brown, but similarly significant for the disabled. Basically, the court ruled that the District of Columbia could not exclude children with disabilities from the public schools.


Nevertheless, here in Manhattan, the old barriers and prejudices remain. Plus, for me, there's the problem of having no letter grades from Walden to bolster my credentials. Walden report cards are just a bunch of comments, nothing quantifiable. As we tour the noisy halls of Dalton School on the Upper East Side, for instance, and I watch the preppy kids carry around heavy books with great energy, and meet administrators who look like stereotypical librarians in their cardigans and loafers (the teachers are a bit scruffier) and talk about requirements and prerequisites, I frankly begin to fear I'm too far behind to function at a better school anyway.


Mom sends me to an education guidance counselor, who evaluates my IQ and recommends a small school on the Upper East Side called Rudolf Steiner. Time passes, but ultimately I'm accepted sight unseen.


Just when I think it's all set, nature throws us what's now called a game-changer.

***

HALLOWEEN'S FREAKS

Welcome, NPR listeners!

As will soon become eminently clear, if it isn't already, I'm a poor blogger.

Lately, I've been using this site primarily to push and preview my book-in-progress, MIRACLE BOY GROWS UP.

But today, I'm going to print the original full-length script of my recent NPR commentary, as read and recorded at NPR West studios last week. Not much different from what was broadcast, except the intro.

As always, please click FOLLOW on the right, follow me on TWITTER, friend me on Facebook, watch my book promo on YouTube, or drop me an e-mail (as long as it's kind).

The more of you, the better to convince publishers to put my book out there.

Thanks for dropping by.  Keep in touch…

HALLOWEEN'S FREAKS

For me, Halloween can be an odd, unsettling holiday.


I have a severe, highly visible disability. I use a wheelchair that I drive with my mouth, and my spine is hopelessly curved. Sometimes people stare at me.


I never thought about a connection between disabilities and Halloween till I learned of the once-common fear of deformities--the limping, hunchbacked, hook-handed, or one-eyed monsters of ancient fairytales and old HORROR movies.


Even the word "creepy" comes from the same word as the oldest term for folks like me, the politically incorrect "cripple."


When people with disabilities weren't feared, they were often gawked at in carnival freak shows. Or objectified for their noble suffering, like Tiny Tim. As if we really had any choice about it.


As a kid, I tried not to think about what people might make of me, sitting in a wheelchair in my Batman or Lone Ranger costume. A hero who can't walk? Why not? Halloween is a celebration of the imagination, after all!


Sure, some kids teased. But I often scored more candy than my brother, who is not disabled. I saw no reason to complain about being treated differently.


Yet as an adult I began to feel uneasy about the creepy exhibitionism of Halloween, the way it encourages staring at all things weird. I can't help wondering if Halloween doesn't promote ridiculing differences, even a kind of conformity.






Yes, I know, for most people Halloween is an escape from conformity, but for those of us who don’t quite fit the norm, that's nothing special. In fact, demonstrating that you're not exactly what people expect is pretty much what disabled folks do every day.


When I take my own kids--who do not have disabilities--trick-or-treating, I often attract as much attention as they do. And no one likes being stared at that way.


It's not the same in daylight. When kids see me on the street, careering in my power wheelchair, they often say things like, "Wow! Can I have one of those?"


Hey, my chair IS an amazing, transformative device.


"Cool, isn't it?" I'll say back.


I figure I should do my part to make kids comfortable with people like me. Sometimes I have to tell the adult with them that it's okay, that kids shouldn't be forced to look away. I encourage them to ask questions, to learn.


Maybe I should see Halloween as an opportunity for grown-ups to do that, too. The holiday challenges us to stretch our perceptions. Maybe it can also teach us not to shrink away from the unfamiliar or judge appearances.


This Halloween, I'll try to remember that I really have nothing to fear.

###

Part 27 of "Miracle Boy”: OY TO THE WORLD!

So here we are again. Be warned. This is the religiously offensive bit.

'Nuff said.

***

Mom is invariably harried, post-separation. She's been looking for work, getting only short stints here and there. She's furious at Dad for abandoning her, for finding new love when she can't, or won't, and for looking so good in his forties. Why do men get better looking while woman fall apart, I've heard her ask no one in particular. I don't realize my turning kosher will make more work for her, cost more money. But she knows exactly what's involved. She hasn't kept kosher since Grandpa Sam died, when I was about five.


Needless to say, Mom is less than thrilled. Yet she goes along. As a compromise, she buys me a glass plate. We're pretty sure glass is nonporous and so can be used for both meat and dairy (though not, of course, at the same time or within three to six hours of each other).


I thrive on the rational authority of the six-hundred-and-thirteen commandments. I get Alec to go along, to a degree. On Friday afternoons, before Shabbat, he pre-tears toilet paper and loosens the refrigerator lightbulb so it doesn't turn on when opened. I can't actually tear my own toilet paper or open the refrigerator, but it wouldn't be right to have someone else break halachic code for me! We set timers to turn on and off lights and the TV during Shabbat—there's a new Saturday morning Star Trek cartoon I can't miss—and give up Chips Ahoy cookies for pareve Stella D'oros. I stop driving my electric wheelchair on Saturdays and, though I'm rarely up for going to synagogue, I start wearing tzitzit and a kippah everywhere. Oy!


"What is this crap?" is Dad's reaction. He smiles after he says it, but Dad is a modern, intellectual Jew who prides himself on getting away from "all that atavistic, Old World nonsense." You should hear him on the Hasidim! "Do they want to go back to the Dark Ages?" Barbara, who's Catholic, has a hard time with the minutia but she's had her own bouts of religious zealotry and is less antagonistic. In college (which was only about five years ago) she even contemplated becoming a nun.


To my parents, it may be only an "adolescent phase," but for me Orthodoxy's rigidity is directly linked to my own strict life. I derive strength from the clear-cut, the unwavering severity, which I'm accustomed to from my disability. Planning and intellect over emotional whim and spontaneity. Brain over body.

###

Part 26 of "Miracle Boy”: Crips get education reform, and I get a man!

Off to NPR West today to record my Halloween commentary.  This is no. 4 for the year, and still I get butterflies.  Wish me luck.

Meanwhile, these humble entries are supposed to be streamed to Amazon.com now.  But I think the Net Fates are against me on this. I keep trying--and failing--to set up an Author's Page ... all because of a short story I contributed to a new collection called Voice from the Planet. Check it out.

As I "type" this (OK, dictate it to my computer), my wonderful agent is submitting our new and improved book proposal to a couple of publishers. Yeah, well, she's wonderful today. If this doesn't work out, I'll still say she's wonderful but I might not mean it as wholeheartedly. Just sayin'.

(Kidding, LKG.  Kidding.)

One final note: After posting the last installment here, I received some interesting feedback. For example, it seems I wasn't the only one threatened by the character I've called Quentin. If only I had known!

I wouldn't have included the incident at all, but some of my early readers suggested I needed to heat up the peril in my story. Readers get involved when characters are in danger. So, in it went.

What follows is what followed that dark event. Enjoy! (And listen to NPR's Morning Edition next Friday.)

***

In 1975, when I'm in eighth grade, Congress passes the Education for All Handicapped Children Act, mandating full integration of kids like me in regular public schools. It's historic, but if my parents are aware of it they don't tell me—or if they do, it doesn't register.


That same year California Governor Jerry Brown names Berkeley's Ed Roberts to be director of the sunshine state's Rehabilitation Department, the first time a former claimant of government largesse has risen to such a position. I say "claimant," and not "recipient," for a good reason. As a student, Roberts was turned down for educational/vocational assistance because he was deemed unemployable. Now he'll forever alter the criteria for evaluating the potential of people with disabilities.


I haven't heard of Ed Roberts yet, but Mom does tell me about a man in Ireland who is so paralyzed he paints with his left foot. She says he's written a book about it. I'm not looking for role models of people with disabilities, and I can't understand why she tells me these things. She's still concerned that I might need some emotional bolstering due to being handicapped, even though I've already done so much, gotten so far, and scarcely ever felt sorry for myself.


Shortly after my bar mitzvah—celebrated with a buffet of my favorite foods, in the ballroom of the reform temple two-and-a-half blocks from our apartment—Mom says, "It's time you had a man's help."


Help with what? I wonder. Ah, she means instead of the Caribbean women we like to make so much fun of. I'm embarrassed. Does she think there's something ... inappropriate ... going on with them? "For your privacy," she clarifies.


Privacy isn't something I'm especially concerned about. I've been naked in front of almost every adult I've ever known!


The first man we hire is a counselor at a day camp I attend the next summer. It's a handicapped camp on Long Island, which I've consented to since it's the only kind of camp that'll take me and I'm tired of being bored every summer while Alec goes off to sleepaway camp in the woods of New England. It's my first protracted experience among … them.


I try not to stare at how some sit in their wheelchairs stooped over or twisted sideways—or how their legs splay open on either side when they lie supine to get changed into bathing suits. I hope to God I don't look that handicapped, though I fear my prayer is hopeless. At fourteen, I regard my disability chiefly as a matter of vanity.


Austin is the best and most popular counselor, able to lift any one of us easily and swing us around for fun. He always shares his pretzels at lunch, tells us he won't go to Vietnam if drafted because he's adamantly nonviolent, and claims to rush home every afternoon to rescue the bugs in his family's inflatable pool. I want to move in with him and his family. When Mom asks if there are any counselors I'd like to have as my helper in August, it's an easy choice.


We have a small house on Fire Island. Austin stays in the guest bedroom. Once I overhear Mom talking with her friends; all the women have a crush on him.


In the fall Austin attends Yeshiva University. Soon he introduces me to Orthodox Judaism. It's alien, so different from the Reform version I've known, but I love the structure, the myriad rules (and loopholes!) for every aspect of life. No need to chart your own course.


And I think this may be the answer to my confusion and self-doubt—to the bewilderment brought on by divorcing parents, budding sexuality, and being grievously disabled in an overachiever milieu. "I want to keep kosher," I declare to Mom one day.

###

Part 25 of "Miracle Boy”

Please keep your fingers crossed.

I've just amped up (all right, edited) my proposal for this book, and my agent is making a couple of new submissions. So we'll see. Keep you posted.

Meanwhile…

A year later, when I'm twelve, Quentin threatens to push my chair down the stairs for no discernible reason. The long-haired boy who's frightened me since first grade, he still has the beady eyes that never take me in whole. We're alone in the hallway; I told my friend Adam to go ahead, not to be late for his class, because I'm confident someone else will come along for me. Quentin happens to be the first person who does.


"I could push you to right down those steps, and you couldn't stop me," he says coolly, between heavy breaths. "No, really, nothing you could do, is there? If I wanted to. And I think I do—"


"You won't," I answer, though I believe he's entirely capable of acting on his minatory words. "You know I'll tell and you'll be in deep shit."


"I'll say it was an accident."


"I can make people believe me."


"But you can't stop me. You can't do anything about it!"


He's got me there. And the more he says it, the more my insides shake. Not my outsides. I won't give him the satisfaction. "You're not going to do it. It'd be stupid."


It would be stupid. At best he'd get kicked out of school. If I got really hurt he could be put in jail. At least that's the way I'm thinking. Can I convince him?


It becomes a staring contest. For strength, I think about Captain Kirk in "The Corbomite Maneuver." It's all about the bluff.


Then, just as abruptly as he appeared, Quentin turns and walks away, giggling under his breath. When he's far enough I close my eyes and count to ten. I have enough time to calm down before a teacher shows up and pushes me to my classroom. I don't tell her or anyone else. Don't want to portray my fear and potential vulnerability, or incur Quentin's retribution. Yet I feel good. I think of the Winston Churchill quote, one of many Dad cites on occasion: "Nothing in life is so exhilarating as to be shot at without result."


Sure, I'm fat and wear glasses and a weird-looking back brace, and have a stupid green jug urinal sticking out of the bag on my back—but I still have inner strength. I may be easily pushed in my wheelchair, but I won't be pushed around.


So I willfully resolve to remain truculent ... preemptively thick-skinned and bristly ... until, at length, another discovery prompts a counter-pledge.

***

Part 24 of "Miracle Boy”

Today is Columbus Day--except not here. California doesn't celebrate Columbus Day. Which I understand, but even after all these years it still feels weird that the kids have school today … and in fact, have no days off in all of October!

Anyway, here's the next installment of my manuscript …

In sixth grade, when I turn eleven, I vent my frustrations on a good friend named Gary. Gary and I like to play Ironside, or at least I do. He's always Mark because, well, he's Black. (Guess whom I play?) On the show, Mark is the street-smart dude who drives the chief everywhere and helps him at home while attending police school. I actually like Mark better than the other supporting characters, so Gary has a position of honor. I don't think of it as racial stereotyping. In fact, secretly I wish I were Black. I like the psychedelic clothes and fluid manner of talking and walking. The outsider status resonates, too.


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' office 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 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 feared it'd make me lazy, make me not use my arms and build 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 all around the apartment. I'm not a good driver yet and keep crashing, leaving tell-tale gray scratches on the white walls.


One afternoon at school, Gary spills paint on a picture I'm drawing. Maybe it was an accident. Maybe he had a good reason. The unforgivable point is his bravado about my defenselessness. "How are you going to get me?" he taunts.


I'll make him sorry for that. I can't fight him physically, but I have other powers. Remember? Words and sympathy are my raw tools.


I look around the classroom. Everyone's gone to P.E. I'm excused and Gary is too, to keep me company. If he resents being my companion, he never says so.


Slowly, silently, I start dumping books and papers and pencils out of my small desk. I have just enough arm strength to reach in and move things out. Gradually, one by one, I cover the entire floor within a two-food radius of where I'm sitting. Some of the papers sail even farther—which I was counting on. Gary watches in disbelief.


When the other kids and Ray, our teacher, return, I don't have to say a word. Someone immediately notices the shambles and demands to know what happened. "Gary threw my stuff all over the floor," I allege.


Gary stares in shocked betrayal, tears welling in his eyes. "No I didn't."


Our teacher doesn't say a word. He's in a spot. Accuse the handicapped boy or the Black boy? I feel no recriminations. I am ... proud. I've mastered the perks of disability.


A girl in our class says, "How could Ben throw so far?" And I know I've won. Never mind that in trying to prove I'm not helpless I've actually reinforced the opposite—made people think Gary took advantage of me.


Even after Ray asks the class to help clean up, I stay mum. This new course I'm on—aggressive, spiteful—satisfies my insecurities. If Gary had gotten in big trouble, perhaps I would've broken. I would've relented. He doesn't, which may mean our teacher suspects. Doesn't matter. Gary's an innocent victim of my need to flex, but I figure you have to be tough to survive in a sometimes unfriendly world.


All goes smoothly for a time. Then, a year later, when I'm twelve . . .

Mr. Snuffles: Part 23 of "Miracle Boy”

A new medical problem further sours the mix. My scoliosis worsens, my atrophying muscles become less effective at holding my spine in anything resembling a straight line. I have to start wearing an uncomfortable back brace—a tailor-made contraption of hard metal and pliant, aromatic leather and other industrial materials. It sticks up around my left shoulder, which is lower than my right shoulder, that being the nut of the problem, making it partially visible under my shirt. It also pinches me painfully under the arm and on one side of my waist, turning patches of skin red and raw.

The brace maker, a tall Geppetto of a man who wears a dust-colored apron and a graying, bushy mustache, explains the chafing is caused by the brace's riding up in the course of the day. At least I think that's what he says. He mumbles with a European accent of indeterminate origin.


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'd much prefer a handicapped warrior to the clichéd dental-hygiene tidbit whose only relevance is a pseudo-medical connection. Then Mr. Snuffles returns with my brace, to which he's affixed two straps. "Zey go here, you shee? Shniff…," he chanters as he snaps the new straps around either side of my groin.


Within a few days my crotch becomes redder and rawer than my waist and armpit ever did. A few weeks later, my parents agree to remove the straps. Another torture device the medical geniuses think up gets the heave-ho, though of course I have to keep wearing the brace, pinchy and irritating as it is.

I hope it's true that suffering builds character.

I never complain about the brace at school. Doing so might incur pity. I pretend it isn't there, but I'm becoming ineluctably resentful of other people's freedom of movement.

The Disability Revolution Begins -- Part 22 of "Miracle Boy”

Back by popular demand--ha!--
Here's the next section...

THE BIRTH OF THE MOVEMENT THAT CHANGED THE WORLD, or MY BIG FAT ATROPHIED PREADOLESCENT BODY

 Nineteen years earlier, in 1953, at the age of 14, Roberts contracted polio and found himself unable to move, in a hospital bed, using an iron long (portable ventilators hadn't been invented yet). There, he made a discovery similar to the one I'm making in the early-70s—the discovery of a new kind of freedom. Here's how Ed Roberts describes it years later:

I decided that I wanted to die. I was 14 years old. Now, it's very hard to kill yourself in a hospital with everything set up to save your life. But the mind is a powerful thing. I stopped eating. They started to force feed me. It was really demeaning. I dropped to 54 pounds.

My last special duty nurse left, and the next day I decided I wanted to live. You see, that was a big turning point. Up until then, these nurses were available and doing things for me around the clock—I didn't have to make any decisions for myself because they were always there. When they all finally left, that's when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom. I started to eat again.

Roberts and his crew, who call themselves the Rolling Quads, are fighting against a system in which institutionalization of the disabled is still widespread. Some states go so far as to forcibly sterilize people with certain disabilities. Some prohibit marriage for the genetically disabled, for fear of procreating hereditary conditions like mine. Visibly disabled people are actually barred from appearing in public in cities such as Columbus, Ohio—Dad's hometown—until 1972 and Chicago until 1974, under what are collectively called the "ugly" laws because they target anyone perceived as unattractive, for being a disturbance of the peace.


The movement to change all this and more is rising in discrete pockets all over, inspired by Black civil rights. Closer to home, in New York City, at the very same time though unbeknownst to me, Judith Heumann organizes a group called Disabled in Action to push for equal-access legislation. If Ed Roberts is the father of disability rights, Judy Heumann is the mother. She, too, is a polio survivor and wheelchair-user. In the 1950s she went to court to win the right to attend New York public schools, and in the 60s sued for the right to teach in them. But I'm not aware of any of this at the time. I have nothing to do with other handicapped people because the only ones I've seen are the kids on the Jerry Lewis telethon or in the special schools or summer camps I'm sometimes threatened with having to attend—the ones who are treated patronizingly, as if they haven't a brain in their heads. I know I'm not like them, so I think I have nothing in common with any other people who have disabilities. ("Disabilities" is already becoming the correct word in some circles, but not mine. I'm still handicapped.) I'm ignorant that others are making or have made the same sorts of discoveries I'm struggling with.


Feeling alone in my struggle, I become unsure of myself, unsure of whether I'm moving forward or backward. At ten, I'm increasingly conscious of my physical limitations. I may even be growing slightly weaker, though it's not obvious except I don't seem to be burning calories as effectively as I used to. I gain fifty pounds between annual doctor visits. I have to buy clothes measured in "husky" sizes. With my hopelessly curly, sandy-colored hair, I look more like a sybarite Bacchus than an angelic Cupid—though whether my fatness is a cause or an effect of my growing insecurity I won't hazard to guess. Doubtless my parents split-up is a contributor.

I begin emulating Chief Ironside's grouchy, hard-boiled demeanor from TV, if not his girth. Not a pretty combination, the softness on the outside mounting an ineffective pillow against a molten hardening within.

***

The Origins of the Modern Disability Movement: Part 21 of "Miracle Boy”

A friend has written a blog article about famous people with dyslexia. Now, I know, having dyslexia is not the stigma it used to be. That's partly because so many people have it, or are related to people who do.

It's practically as common in our language nowadays as OCD and ADD -- and, for that matter, LOL. But I mean some people even go around humorously self diagnosing. "Sorry if I'm not focusing, it's just my ADD," you might hear someone say.

I've even heard people say "OCD is the new anal." In terms of describing behavior that's repetitive or fussy. Just to be clear.

Still, dyslexia is a real disability, even if some people make jokes about it and similar "invisible" conditions. I even once heard the Washington disability-rights leader Evan Kemp say that his dyslexia made his life more difficult than his spinal muscular atrophy. It made people think he was stupid just because he had trouble reading and writing the way they did.

I certainly have always felt pleased that my disability is so visible, so obvious. People may disrespect or underrate me because of it, but they never accuse me of faking it or taking advantage of it (even when I do!).

Anyway, here's the link to my friend's piece about dyslexics. “50 Famously Successful People Who Are Dyslexic”
Just one thing. Don't come back to me with jokes about Tom Cruise. I've probably heard them all already anyway.

The Birth of the Independent Living Movement

The whole idea of dependent autonomy, of being self-directed by relying on others, is a new concept that activists in Berkeley, California, are promulgating. I don't know about that at the time, yet on some level I know learning to manage my own assistants will ultimately enable me to grow up.

And marginalizing Dad from my daily life—distancing myself from his inability to accept the permanence of my disability, his hunger to uncover a cure—becomes liberating, too. I express and mask my mixed feelings towards him with a little song I make up. "Oh, my daddy, so sweet and so plump [which he never was], he looks like a camel without a hump!" It always makes Alec laugh, and Dad tolerates it. No one ever realizing the hostility behind it.

In the end, I decide my parents' divorce isn't a tragic turn but a fortuitous one, because it sets me free. Yet the ghosts of their breakup—the encroaching sense of familial bonds as stifling, strangling—will haunt me in adulthood.

***

That same year—1972—the nation's first curb ramp for wheelchairs is cut at the corner of Bancroft Way and Telegraph Avenue in Berkeley—the result of lobbying from a recently established group called the Center for Independent Living, whose headquarters I visit seven years later. The CIL is launched by a small cadre of physically disabled activists, mostly graduates of the University of California at Berkeley, with a mission to give people with disabilities the means to control their own lives, have full and equal access to everything society has to offer, and live outside of institutions, in their own homes, with the assistance of personal aides they hire and control themselves.

This is very different from any sense of what it means to be handicapped that I've ever known. It's antipodal to Dad's view of it as a mark of failure, a problem to be solved, or Mom's semi-stoic proclivity to just cope and get on with the business at hand, fighting misery with industry. It's different from my own formulation, at ten, that disability can be ignored if you've got enough character, intelligence and humor to rise above it. The independent-living "model" is nothing short of revolutionary.

Spearheading this revolution is a visionary named Edward V. Roberts, who will become known as the father of the modern disability-rights movement.

***

The Introduction of ... Barbara!! Part 20 of "Miracle Boy”

Congratulations!  You're one of about 400 people who come to this spot every month.

A silent minority, I suppose, since I rarely get feedback.  Still, keep coming, please, and tell your friends  ... and coworkers ... and enemies ... I'm not picky.

Meanwhile, a couple of points toward my marketing campaign emerged this week:

First, NPR is taking another commentary of mine, possibly two. Yay! 

Second, my editor there thinks it's likely I'll be invited for an author interview if and when this book is ever completed.


Is all this the kind of publicity publishers are looking for? Stay tuned.
Onward!


In the weeks and months afterward, I regret drawing attention to my pitifulness. The effect it has scares me a little. So I revert to type—moderately cheerful, humorously cynical, heroic.


Outwardly, my parents' separation hits Alec harder than me. The Sunday after his bar mitzvah he throws a huge tantrum when Dad has to go to Barbara's niece's First Communion, on Long Island, instead of taking us to Adventureland. "But it's my bar mitzvah weekend!" Alec keeps saying.



I go with Dad. Alec stays home with Mom, who cancels her own plans for his sake.


As for Barbara, part of the problem might be Dad introduced me to her first, before Alec. Only about three weeks into the separation, on a sticky, sweltering Saturday in late-June while Alec's away at sleepover summer camp, Dad takes me to Coney Island, and she's there—tall and thin in a yellow T-shirt and blue-jeans skirt that shows her knees, with long straight brown hair that hangs down like drapes, unadorned, on either side of her head, no makeup, and round glasses. Very 1972. She's twenty-six, a dozen years younger than Mom and nearly nineteen years younger than Dad. He presents her coyly, "my friend from the office." I like her right away, not realizing her part in all that's going on.


Late in the afternoon I ask where she lives. Dad grins. "Can't you guess? Isn't it obvious?" It isn't, to me. "With me," he continues. "We're sharing an apartment in Brooklyn." I confess to a confused sensation of shock and betrayal. A joke? I wonder.


Gradually my disbelief turns to fascination, especially when I visit their brownstone. I've never been in a brownstone before. Dad has to take me up two flights of steps.


Sure, Barbara's different from other adults Alec and I are used to. She's a lapsed Catholic, for one thing. Which is not necessarily bad. Later that year we have our first real Christmas tree!


For me, the biggest adjustment is I no longer have Dad to wash and dress me every morning. He only takes care of me on alternate weekends and holidays. Mom tries to fill in but soon finds the task too onerous. So my parents join forces to hire babysitter types—mostly rough black women from the Islands. I'm not happy about the new hired help. Evenings and weekends, when they're gone, Alec and I make fun of them. He does a hilarious imitation of fat Ena, who's from Trinidad: he waddles around our apartment muttering about "De Ba-bull! De Ba-bull!" Ena is succeeded by Elizabeth, from "Bwiddush Guyana," who hates winter. "Oh Behn! I's col' ou'side. So col' col' col'," I mimic to Alec's paroxysms of wheezy laughter.


It works off the stress of having these foreign invaders.


Relying on hired helpers is a difficult transformation, but it'll prove key to my achieving a greater degree of independence.

Learning To Use My Disability As A Weapon: Part 19 of "Miracle Boy”

Dear Reader (yes, this means you),

By now it's pretty clear. As I've said before, I am a poor blogger, social-network user, online promoter, Digger, and Twitterer. Don't really know what to do with these tools, or how to devote the time necessary to keep up with them.

So let me ask: Is once a week good enough? (I sincerely hope that's not too frequent?) No, I'm not fishing for compliments. I'm just trying to determine if more often would be better, i.e., posting new segments every few days.

I also wonder how long each segment should be.

(My teenage daughters would probably giggle here. If there is any innuendo about asking how long it should be and if once a week is good enough, then that's intentional. And if my daughters are not giggling, then we obviously haven't raised them right!)

Nevertheless, though it's been less than a week, I shall take the plunge and post another short segment. Summer is over! Time for me to get back to work on this thing!

But please do share your thoughts in the comments section below, on Facebook or by e-mail. And thanks for stopping by...

How To Wield Disability Like A Saber

The windy, early-spring night they tell us they're splitting, after an oddly solemn dinner, Alec and I fall silent, noncomprehending. Then Alec is full of questions. Where will Dad go? Who will tell us stories now? Will we still get presents on birthdays? I'm too confused for questions and stay quiet, absorbing. Let Alec do the spluttering. Until I start crying and Mom takes me on her lap. "Isn't my life hard enough already?" I say.


My words steal my parents' attention from Alec, with all his questions. Doubtless one of my goals. I've never spoken such words of self-pity before. To my mind, it's a ploy. If I push that button, play that card, I can make them take back this idiotic separation idea. Perhaps I can hurt them in the bargain, just like they're hurting us.


Mom holds me tighter. Dad wails and pats my curly head. And I see the power of words—of my words.


Whether or not I want to admit it, I also intend Mom and Dad to know that despite my well-adjusted cheerful exterior I do have frustrations even they can't resolve. It's not politically correct anymore to blame our bodies' limitations for our woes. It's better—more accurate and more constructive—to hold accountable the "oppressors": the vast, unaccepting "majority culture" of the able-bodied. Yet at some basic level people with disabilities do struggle against their own bodies. That may seem self-evident, but many in the then-burgeoning disability-rights movement minimize these frustrations. They fail to acknowledge the obvious—that no amount of societal attitude adjustment or legislated access will ever solve all the difficulties. Some of the struggle is inborn, like it or not, and unsolvable.


Why any of this would make any difference to Mom and Dad's marital situation, I can't say. But I like the lovely feeling as Mom rocks me on her lap and Dad pats me. It's clear my parents will never forget my simple statement. Besides the power of language, I learn that using other people's sympathy can be a formidable tool. My secret weapon.

***

Part 18 of "Miracle Boy”

Here's this week's installment:


… Perhaps it's not surprising my parents' marriage dissolves after seventeen years. It's 1972—practically everybody is divorcing! I'm nine years old, Alec is twelve. Dad, forty-four, is doubtless in the midst of a midlife crisis. Yet could my disability—the strain it puts on them, the differences in their reactions to it—be partly responsible? In those days, before disability-rights becomes a widespread movement, they are all alone, with no support system to fall back on, nothing but their wits and perseverance to guide them.

Before I'm born— before Alec, for that matter—Dad quits teaching freshman composition at Boston University to take the editorship of a new quarterly magazine called Apparel Arts, later renamed Gentleman's Quarterly, or GQ. The young couple moves to New York's Upper East Side. Paula lands a job at CBS television, where she works alongside celebrities such as John Houseman and John Frankenheimer. Richard Burton propositions her while she's pregnant with her first child (she turns him down), who will be named Jay Alexander—“Jay” after his late grandfather Jacob/Jack, though the family always calls him Alec.


When Paula, then twenty-five, brings her beautiful, brown-haired baby to Cincinnati to show her parents, she's greeted with faint half-smiles. "Don't you want to hold your first grandson?"


Molly has been having pains she won't talk about. With infant in tow, Paula has to drive her mother to the hospital; Sam won't go near the germ-ridden place or spend the money for gas, and Molly never had a driver's license.


She's diagnosed with ovarian cancer. Oh Lord! One of the deadliest forms, says the doctor, and highly hereditary!


Within months Molly, barely fifty, is dead. An indelible foreshadowing haunts my mother the rest of her days.


When I'm born, two-and-a-half years later—an adorable round head and sad blue eyes, with reed-thin arms and legs—I'm given the middle name Michael and Hebrew name Melech after Molly. "Benjamin" is after the obstetrician.

***