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 . . .