ON FATHER'S DAY, BREEDING MUTUAL RESPECT

By Ben Mattlin

Now that my father is nearly 85 years old, we seem to have a lot more in common than we ever did before.

That's not just because I'm now a father myself.  It's because Dad, who's still in remarkably good health, has had to slow down, which has caused him to understand at last what my life is like as a physically disabled person.

I am a lifelong wheelchair user, thanks to a genetic neurological muscle weakness.  It hasn't stopped me--I'm also a Harvard graduate, husband, father, and moderately busy financial journalist.  But having a disability can at times force me to go slow.  It often makes me plan logistics ahead of time, quashing any impulse toward spontaneity.  And it's given me a particular perspective on life's multifaceted values.

The overlap in my worldview and my Dad's became clear in a recent conversation.  He was grumbling that he shouldn't have to "think young" or pretend to have more energy than he does--that he's entitled to move slowly, spend long afternoons in a rocking chair, need a seat on a crowded bus or even doze off in the theater.  "Sloth," he joked, "is no longer a sin at my age.  It is a well-earned privilege."

My father has a keen wit, to be sure, but for me these sentiments have important repercussions.  I've often pushed myself too hard, felt afraid to use my disability as an excuse--in short, I've acted like what disability activists call a "super crip," trying to be better than average just to prove I shouldn't be counted out. 

Many other minority groups and women have said they have to work twice as hard to be treated as equals.  It's basically the same thing. 

Remember when George Bush Senior went skydiving in his 70s to prove his virility?  How often do we hear about an awe-inspiring quadriplegic or amputee who climbed a mountain or went hang-gliding, or performed some such Herculean stunt?  Maybe they're just naturally outdoorsy, but surely they also want to demonstrate that they've still got it, are still in the game--that there's no difference between them and everybody else. 

Is it really necessary to put these extra physical challenges up against the so-called physically challenged?  Frankly, I think I'm as good or bad as anyone else just as I am, without having to prove it.

I concede that these brave acts do inspire--but some of us are too busy just doing the heroic business of surviving.  Do we really need to do something superhuman to feel good about ourselves and gain the admiration of others?  Don't we deserve the same degree of respect as anyone else?  Frankly, I often feel that the everyday survivors are the true inspirations anyway.

Later, in another conversation, Dad said, "I hate it when people tell me, 'Oh, you're not old!'"  He laughed at the patent absurdity of it.  "I'm almost 85!"

This funny comment struck a chord with me, too.  It called to mind the many times I've heard things like, "We're all disabled in some way."  Comments that are meant to be kind and accepting, I suppose.  So how come all I want to say back is, "Oh, come on!"?

It's as if the words "old" and "disabled" were unspeakably dirty concepts.  There should be nothing shameful about aging or about having a disability.  We shouldn't have to minimize or sugarcoat them.  In fact, I think we should be proud of them.

I asked my father about this.  He denied meaning anything so profound, but I don't think I'm projecting to say he feels a tad insulted, or at least patronized, by such remarks.  And I wonder if he hasn't actually taught me a great deal over the years about accepting differences after all, even if those differences are simply a matter of age.

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MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity is available now for pre-order from Amazon.com and BN.com--for more info, go to www.MiracleBoyGrowsUp.com

More on PUSH GIRLS

First of all, I've been guest blogging.  It's supposed to be a good way to promote my upcoming book.

(Most of my guest blogs have appeared on DisabledOnlineLosAngeles.  Check 'em out.)

The most recent one, I talked about the new Sundance Channel reality TV series, "Push Girls."  So far, I guess you could say I have a love-hate relationship with the show.

I love that it exists.  I love that it shows hot, empowered women on wheels.  I love that it uses real para- and quadriplegics, telling their own real-life stories.

But…

Well, in fairness, when it comes to disability issues I'm a bit of a radical.  I think the most disabled among us should be welcomed as equals.  I want to hammer those who construct or sanction obstacles to acceptance, integration and access--those who accept or perpetuate stereotypes.  I want to salute all those who've come before and laid the groundwork for everything from curb ramps to civil-rights legislation.  The things we practically take for granted now.  I want to remember, appreciate, and remain vigilant.

This show does none of that.

I understand they are supposed to be loud and brash and flashy.  That's the nature of TV, especially Reality TV.  But when one of them says something like, "If you can't stand up, you've gotta standout!",  I want to answer back, Why?  Isn't it okay just to be who you are, disabled and all?

Granted, I love the scene where the one goes to be photographed in an attempt to restart her modeling career--and ends up having a muscle spasm.  The photographer sort of freaks out, but the woman herself remains calm and in control as she explains what she needs, why this happens to her, and what to do about it.  This is the reality of her disability, and she is completely competent in controlling her own care, making sure her needs are met.  A powerful scene that's especially significant if you know the history of disability portrayals.

I hope to see more like this.

Unfortunately, the first episode was a tad overmuch for me.  Now, I'm not exactly a Reality TV fan.  I'm not into the voyeuristic aspects.  But to me, too often these women seem to protest too much (to borrow from Shakespeare).  It's sad.

For instance, when one of them says that people wonder if she can still have sex, she doesn't just say yes, I can and do.  She actually ladles it on with "oh yes--lots and LOTS of sex!"

Puh-lease!

In future episodes, I'm looking for more about obstacles and barriers and advocacy.  It's a dangerous thing when the burden of integration is put on the oppressed minority--in other words, to say these chicks will fit in just fine if they're plucky, sassy , and brash enough to make it.  I'm delighted they're independent-minded and hate to be helped, as they keep reminding us.  But sometimes we need to ask for help, and the sooner we face that the better. 

And sometimes--maybe all the time--we need to remind the nondisabled world that it ought to meet us halfway, at the very least.  We might not want favors or special treatment, but we shouldn't have to do all the work of inclusion ourselves.  Because all the guts and bravura (or hairspray, makeup, bangles, etc.) in the world won't get your wheelchair up a flight of steps or even get you that job or that relationship.  The other side has to be open and affirming of us, disabilities and all.

Disagree?  Please let me know.

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LA-based journalist Ben Mattlin, who was born with SMA, is the author of MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity, available now for pre-order from Amazon.com and BN.com--for more info, go to www.MiracleBoyGrowsUp.com