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?

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.

***

Thank you for the kind words (& keep 'em coming)!

Hooray! To start the New Year off with a bang, my NPR piece was broadcast on Monday morning, January 4, 2010. Judging by the flood of kind e-mail I've received about it, it must have come off all right. I'm gratified and intimidatingly humbled about reaching so many people. Thank you all for listening and writing!

The actual transcript--slightly different from the one on the NPR.org/opinion site--is linked to my professional Web address at www.BenMattlin.com

For anyone who cares, here's the original long version of the Commentary--the one I submitted, before my editor made cuts to save precious broadcast minutes. Read on, keep listening, send links to friends and colleagues, and know that I'm always delighted to hear from you.

A GOOD ENOUGH YEAR

For me, the new year is as much about looking back as looking ahead. At least this time it is.

I turned 47 this past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. Nobody knew that at first. It can remain invisible for many years. Then it gradually, relentlessly weakens muscles.

In my case the weakening began at about six months. My mother noticed I wasn't developing as my older brother had. I didn't sit myself up, or stay up when put into a sitting position.

We now know that about half of the babies who manifest symptoms of S.M.A. die before the age of two. Their hearts and lungs become too weak to go on.

I was one of the lucky ones.

I've used a wheelchair my whole life and no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. Most days I feel lucky. Always have. So why do so many people feel sorry for me?

They don't know me, of course. They don't know that I was lucky enough to grow up in a good family, to graduate from Harvard, to get my writing published, even to marry and father two terrific little girls. I consider myself lucky for a lot of reasons.

Still, people who think they know me from what they see on the outside have said to me, "If I were like you, I'd kill myself."

This is supposed to be a compliment, I think. They mean to commend my perseverance, my pluckiness. So how come I want to say back, "No you wouldn't"?

(Or "If I were like YOU I'd want to kill myself, too!")

Yes, there are some people in terrible circumstances, with painful illnesses, who do want to die. But there are also many, many people living in conditions I don't envy--living in famine, in war-torn countries, or in abject poverty in this country--who retain a stubborn sense of hope and struggle on. People whose lives I wouldn't trade for my own.

It happens every day. Nothing all that extraordinary.

Don't get me wrong. I don't see myself as a kind of modern-day Tiny Tim, pointing out the good in people, cheering everybody up. No thank you. I reject holding myself up as an inspiration, an example of the triumph of the human spirit.

Anybody who really knows me knows that. At home I grouse and kvetch all the time. Why not? It runs in the family. Plus, life is rough. Especially for me, at times.

Like two years ago. 2008. I had to spend most of that year in a hospital bed. A surprise gastroenterological infection required emergency surgery. Then something went wrong under the knife. Myriad dangerous complications ensued. I nearly died.

But here I am to tell the tale. So yes, I do feel lucky. The year just past wasn't anything special. The usual assortment of good and bad. But it was blessedly drama-free, and after its predecessor that was enough to make it a good year.

Sure, I hope for better things ahead. I hope for continued good health for my family and myself. For our country and our world. I hope in the new year to do better than in the year just gone by. To finally get that book contract. To really master Facebook and Twitter. And to do more of these commentaries for NPR.

But even if most of that doesn't work out, I'd still say I'm lucky. Because sometimes just normal life is good enough. And for me, this life--life in a wheelchair--is normal. And that's good enough, too.

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