AM A SPECIAL-NEEDS DISABLED CRIPPLE?

Recently, a friend wrote me about an idea he was puzzling over.  It concerned the language of disability.

The very word itself, he said, was troubling--and I agreed.  He wished there were a term that "didn't even remotely imply 'substandard' or 'not,'" he wrote.  He wished there were "a different gestalt altogether."

(Gestalt!  Now THERE'S a word!)

He's certainly not the first person to raise these sorts of concerns.   What's so great about the word "disability"?  What was so wrong with the word "handicapped"?  Is the word "cripple" still considered offensive? 

 

In further explanation, he fleshed out this scenario:

Wouldn't it be nice if people thought

'There goes Ben, just like me'
and not
'There goes Ben, I'm glad I'm not him'

Well, I couldn't disagree with that!

In answering him, however, I felt like he'd released a pent-up wellspring of ideas and yearnings.  Every movement--perhaps every generation--has gone through the undulations of nomenclature.  (Okay, maybe that's a bad phrase.)

For example, how did we go from "Black is beautiful" to "Black" is not good, or at least not as good as "African American"?  How did "gay" suddenly become LGBT (and now I'm told it's LGBTQA)?

All right, these are rhetorical questions.  I'm not so much interested in the answers as the ideas behind those transitions.  Are any words or terms intrinsically good or bad, positive or pejorative, or is it just a matter of context?

I told my friend that his idea was a good one for an essay, but that he might want to flesh it out a bit.  Perhaps provide some linguistic history--for instance, I believe the oldest English word for someone like me IS "cripple."  Chaucer used it, I think.  It referred to someone who creeps along the floor (no doubt related to the word "creepy"). 

Many folks I know object to the word "disability" because it does sound so negative, yet at least it has the advantage of being a term chosen by disability-rights activists, as opposed to imposed upon us in patronizing fashion by others.  I don't love it, but I think it beats the treacly euphemisms such as "differently abled," "physically challenged," or "special needs."

On the other hand, I told my friend, we all have bigger problems to worry about than language, don't we?  I think of this when I hear people use politically correct terms like "gay" or "African-American" to say something disparaging and most definitely not politically correct!  Do words really change attitudes?  Not sure.

What do you all think?

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.

###

(Hey, please leave a comment below. Let's get this party started! 
Till next time, thanks for reading.)

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 8 of “Miracle Boy”

The video clip is going strong, with 65 viewers over the past three days. And only about half of them are me!

Joking. I think. Not sure how YouTube counts these things.

If you haven't seen it, you don't know what you're missing. (How's that for an obvious statement?!) So click here already and take a look...

http://www.youtube.com/watch?v=i0eyffGTHLU

Here is the next little installment of my project, and it's a fun one. Then, on Monday, comes my newest NPR Commentary. I'll post a transcript here just as soon as it's legal to do so.

Gardez la foi!

MIRACLE BOY GROWS UP, part 8


I can't stand or raise my arms up high, but at this point I can use my hands pretty well. I can't cut my food but I do feed myself. I brush my teeth by mostly holding the toothbrush still and moving my mouth side to side. I have very weak muscles, that's all. I have full sensation. My arms and legs are skeletally thin, I have scoliosis which makes my left shoulder lower than my right, and my belly bulges because I have no abdominal muscles to hold it in. Alec sometimes calls me the Pillsbury Doughboy, poking me in my fattest ripples. It doesn't hurt much and I laugh. I have complete control over my bathroom functions. I'll be able to father children, I'm told. There's nothing wrong with my head, as Mom and Dad frequently point out. Dad went to Harvard, and brain ability is important to him. But when I get sick, it's very hard for me to cough effectively, and since asthma runs in the family there's always a lot of concern about my breathing. Normally it's fine.


I vaguely remember when Mom and I went to Johns Hopkins Hospital for my muscle biopsy, which confirmed the original diagnosis of amyotonia. I was three, and we took the train from New York. Mostly I remember being returned to Mom's arms after the surgery. I remember shivering and crying. I remember Mom's blue dress—a welcome contrast to the sickly yellows and pale greens all around—and being enwrapped in its folds. I remember confusion and fear. I remember returning home to Dad and Alec with souvenirs—a bright-colored pinwheel and my hospital ID bracelet. Alec promptly grabbed the pinwheel from my small hand. Mom and Dad scolded him, and he dropped it onto the floor and marched around the apartment in his pajamas singing silly songs in a loud warble. Besides the pinwheel, what he stole from me was the attention. I was powerless to stop him or to retaliate.


Alec is high energy and prone to what Mom calls temper tantrums. Mom says it's because I get so much attention from her and Dad. In turn, I get Alec's attention by doing funny voices and resorting to creative name-calling. I make him laugh.


"Why are you such a freak?" I say with stealthy calm.


"Am I fr-r-r-r-eaky? Freaky! Freaky! Freaky!"


"See?"


"At least I'm not a Stu-ball, like you."


"I'm not stupid!"


But my heart isn't in it. Maybe I am stupid.


"I didn't say 'stupid,' Retard. But I'll bet you don't know how much sixteen times sixteen is?"


He seems so impossibly strange. So different from me. So aggressive. And probably smarter. Alec is eight and goes to a good school where he learns French and reads big books. I'm still five and can't read. I would be going to Alec's school, L'École Française, on the Upper East Side, but this elite institution refuses to take a kid in a wheelchair. Architectural obstacles abound, and who can predict what effect my presence may have on the other kids? It's 1968, and it's still legal to discriminate against the handicapped.

***

Part 3 of "Miracle Boy"

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

***

"Today my little brother fell out of his wheelchair and dropped his fire engine."



This is what Alec writes in his first-grade composition book one spring weekend when I'm three. He writes it after Dad takes me to the Lamston's under our apartment, on York Avenue at 79th Street in New York City. It's one of my first outings in my new, shiny, green-upholstered wheelchair. Up till then much of my life experience is from the perspective of Mom's slim hip, Dad's long arms, a baby stroller or the sofa, wedged with pillows. But soon I'll be starting nursery school—at Riverside Church, the only regular nursery school in the city that will take a physically handicapped kid in 1966—so I have to get a proper wheelchair.


I like Lamston's. I've been there before. Our housekeeper / baby-nurse Inez has taken Alec and me a few times. Inez is strict. She's what I understand is called an Egro. She and other Egro baby nurses and maids meet at the Lamston's lunch counter to eat and smoke and gossip.


Today Dad says I can buy a toy at Lamston's if I'll be quiet and behave. It's not hard to choose. I want a Matchbox car. When Dad is done shopping, I remind him of his promise and he pushes me to the toy aisle. But the Matchboxes are on a high shelf. Too high for me to see well from my wheelchair. Dad undoes my seatbelt and lifts me up for a better look. He's strong and tall, and with him I feel safe and have no boundaries.


I pick a small fire engine. I don't have any in my collection, and I want one because fire engines can go anywhere. They have no boundaries.


I clutch the little hook-and-ladder in my small hand as tightly as I can.


On the walk home Dad abruptly decides on a detour. Instead of pushing me around the corner at 79th Street he makes a sharp left toward the garage under our building. "A change of scene," he says. The steep ramp down is dark and cool as we get closer. The descent begins, and I feel its pull beneath me. Dad holds tight to the handles of my wheelchair. The downward pressure intensifies. Before I know what's happening I'm tumbling out of my wheelchair onto the hard, oil-stained incline. And I keep rolling ... out of control, on my own, a rag doll without enough muscle to stop myself ... until I bump against a side wall and just lie there.


I don't remember crying. I don't remember hurting. I disappear into my brain. I remember thinking—having an acute, reflexive alertness to my surroundings and taking a kind of mental inventory of where I am and how I'm feeling. An out-of-body alertness. There is nothing else I can do. I'm too stunned to hurt or cry. I can't move anything—I never can—but I can be aware and wholly conscious, an omniscient observer. Then Dad is there, beside me, asking how I am, touching me, examining me for damage and scooping me up off the garage floor and placing me back in my chair. This time he remembers the seat belt.


He keeps asking if I'm okay. This is when I start to cry. A few heaves at first, then gushes. He rushes me upstairs, to our apartment, to Mom. I can't stop crying, though I try. I become breathless.


"There, there," says Mom, taking me into her arms. She quickly turns practical. "Stop your crying and tell me what hurts."


I can't stop bawling and haven't a chance of answering. She holds me still a moment and it feels warm and lovely. Then Mom sees a bump on my head. I mutter about my finger and try to produce my right hand. Its ring finger is swollen and rosy-purple and aching. Mom calls for ice, which Dad promptly delivers. My weeping subsides, replaced by a youch at the touch of ice to my scalp.


"You'll be fine," Mom declares.


She puts the ice to my finger and looks up at Dad with lightning bolts.


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