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 . . .

Pre-Adolescent Stripping, Santa Claus and MDA: Part 15 of "Miracle Boy

It's been a busy week here at casa Mattlin. (Chez Mattlin? Whatever.)

I'm under deadline for Institutional Investor, among other things.

Anyway, without further delay, part 15 of "Miracle Boy Grows Up"...

Naughty and Nice

***

The "Naughty Bits"

By now Joanie and I are considered girlfriend and boyfriend.


At my apartment, in my tiny bedroom, when and where no one else is around, we decide to undress.


For me the most burning question is, how? How to manage it logistically?


Under the pretext of needing a nap, I ask Inez, our housekeeper, to lift me out of my wheelchair and put me in bed. Inez is the only one home besides Joanie and me, but somehow it still feels like we're done.

Once Inez has left the room, Joanie closes the door and I instruct her how to open my jeans. She knows how, of course, but I feel she needs encouragement.


"I can't unbutton them myself," I explain matter-of-factly.


She insists on going first, and begins to lower her jeans and underpants. I try to look but can't—I'm not sure what I see. Then it's my turn. To my surprise she says no. Fearing she's merely being bashful about helping me, I try my usual brand of reassurance. "You can do it. It won't hurt or anything."


I don't think about the implications of her actually touching me. We're just having fun, sharing. She continues to say no and I give up. Inez puts me back in my chair and we play ordinary board games. But it's clear: I'm not going to let my handicap get in the way of my romantic life any more than I let it detour my education or anything else.


It's a lesson I'll carry with me long into adulthood, when it really matters.

***

In 1968, the Muscular Dystrophy Association of America's Labor Day telethon is broadcast outside the New York metropolitan area for the first time. Launched in the early-50s as an occasional four-hour fundraiser on a few New York television stations, it became a 19-hour star-studded TV event on Labor Day 1966, though still within tight geographical boundaries. In 1969, when I'm seven, I'm invited to be its poster child.


We think highly of the Muscular Dystrophy Association in my household. It tells us about my spinal muscular atrophy, what to do to keep me healthy. Mom and Dad say it helps pay for Dr. Spiro, my neurologist. Someday it might find a cure so I can walk, they say.


On a fall Saturday afternoon Mom takes me to a studio downtown—a large, mostly empty windowless space. At the back, under very bright lights, a quiet girl a few years older than I am stands awkwardly with the aid of crutches. She has short, dark hair and wears a short green pinafore dress that exposes leg braces. Mom says she's the outgoing model. I should speak to her for tips about what it's like to be a poster child.


I watch silently. The girl doesn't do much, just stands there as a camera clicks. Then a man in a suit waves for Mom to bring me over. I'm parked in my wheelchair next to the girl. Mom walks away. A fat man in shirtsleeves starts snapping photos of the two of us. Am I supposed to be doing something? I squint at the bright light. After a while, we're told we're done.


Is that what it means to be a poster child?


The photo appears in a Sunday supplement my family doesn't normally get. I dream of fame.


In December I'm asked back. I'm to be photographed on Santa's lap. I'm beginning to have doubts about Santa—after all, I'm seven now—but I figure it's probably not the real one for the picture, since I'm not sure Santa does that kind of work. Some Jewish kids don't celebrate Christmas, but we do. Every year Dad takes Alec and me to see Santa at Macy's or Gimbels, and Santa always brings us presents. I'm not sure how he gets in since we don't have a chimney, and he couldn't get past the doorman and elevator men without being announced. Probably lands on our tiny terrace and comes in the glass door or a window. That's all Alec and I know about Christmas—what we learn from the TV specials. Nothing religious. We also celebrate Hanukkah and the other Jewish holidays. But a number of things about Santa just aren't adding up. For instance, there was the year I requested a Johnny Lightning racetrack and I got a Hot Wheels set instead.


For the photo shoot, I'm put on Santa's lap and told to smile. Finally some instructions, some direction! I plan to tell Santa one gift request and my parents another, as a test. Yet in all the hubbub of clicking cameras and bright lights I forget to ask Santa for anything. I'm still not sure he's the real Santa, but Mom says this will count as my Santa visit so I'm not taking any chances. I tell Mom I blew it, I forgot to ask Santa for anything, and she says I can tell her what I was going to ask for and she'll pass the word on to Santa. I still want to test if Mom is really Santa. "No, it's a secret," I say.


The friendly man in charge overhears me and offers to be my messenger to Santa. He smells nice as he leans over me, letting me whisper in his ear, and promises not to tell Mom. But later, as we're getting ready to leave, I see them talking.

###

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