Sooner or later, all of us ask that burning question: Will there ever be a cure for SCI paralysis? That’s the question that looms large in our minds, especially in the first days, weeks and months following an injury. Then there’s the other question – the flipside of disability: Does it really matter?
After 34 years as a quad, I still ponder this complicated issue on a regular basis. To express my opinion on the matter I’ve always used an automotive analogy: You’re driving a bent, twisted jalopy and badly in need of new paint body work. It’s quaintly requires daily maintenance and it has character. In fact, you may even like it, just the way it is.
Then some guy in a white lab coat drives up in a hot red 2013 Ferrari F12berlinetta (that’s correct spelling for the Scuderia’s newest, fastest car) and offers you a direct trade, no strings attached (except, perhaps, for an insurance co-payment). He’ll take that junkyard heap off your hands in exchange for one of the most beautifully engineered machines in the history of human mobility.
The question is, would you make the trade?
Confronting the Question
Case in point: When the quad rugby documentary “Murderball” was making the rounds of film festivals in 2005, I interviewed the three main quads in the movie. I asked them point blank: Would you want to be cured if a cure became available? Mark Zupan, the undisputed star of the movie, immediately said “NO!” His teammates Andy Cohn and Scott Hogsett paused and then followed Zupan’s lead: “No,” they said, just a hint less convincingly.
Later, I repeated this exchange to a paraplegic friend of mine who’s a very smart and sensible attorney. “Anyone who says ‘no’ to that question is a f-ing idiot,” he said. I laughed at his unequivocal reaction because in many respects I agree with him. Before I die, I would love to have my broken body fully repaired, even for a day or two. If I could walk with bare feet on a warm summer beach or thick green grass for even a few minutes, I’d seize the opportunity. (There are many other things I’d want to do, but let’s stay on topic.)
But it’s not that easy, is it? Ask almost any able-bodied person (especially those who’ve never been directly affected by someone else’s disability) and they’ll immediately assume that every disabled person on the planet wants to be cured. And that’s simply not true.
Deciding Who You Are
First, there’s the difference between those who were born disabled (and thus perhaps identify more deeply with being disabled) and those who were disabled later in life, as I was shortly before my 18th birthday. That’s a complex dynamic I’d like to examine in a later column. But it doesn’t matter how or when you were disabled; the assumption that we all want to be cured speaks volumes about the place we occupy on the ladder of society. (“Clinging to the bottom rung,” as I like to put it.)
To assume that we need and desire “fixing” is to fundamentally deny who we are. It’s a condescending assumption for those of us who are comfortable with our disabled identities. “Comfortable?” they might say? “How can you be comfortable with…you know…with THAT?” as they point to our wheelchairs. “I mean, really…don’t you want to get…you know…BETTER?”
Like I said, it’s just not that easy.
After 17 memorable able-bodied years and 34 admittedly difficult “gimp” years, I can honestly say the question of cure simply doesn’t matter to me anymore. You see, I’m a scientist at heart. As a lifelong “Star Trek” fan, I closely identify with Mr. Spock. (Heck, even my iPhone case has the Starfleet “sciences” insignia on it, gold on blue, just like Spock’s uniform.) I know how science works and I knew, intuitively and logically, very soon after my injury in 1979, that a cure for SCI was at least 50 years in the future. From today’s perspective, I still might be correct.
And yet I allowed my desperate parents to drag me to cure conventions (“Cure-Cons,” you might say), listening to sleep-inducing “potential cure” presentations by neurologists and researchers who droned on and on with lab jargon so thick you’d think they were addressing an audience of their peers instead of layperson quads, paras and families desperate for any shred of hope. My mom (who died in 1988) founded the Pacific Northwest chapter of The Spinal Cord Society (an organization still steadfastly devoted to “Cure, Not Care”), and I participated with ambivalent caution as we pursued the elusive cure over years of fund-raisers and little or no tangible progress.
Living for Tomorrow and Today
Then something happened. It was so gradual I barely noticed it: Slowly but surely, I began to care less about cure and more about my place in society. I began to notice how we, the disabled, desperately needed a direct, inclusive place in political discourse. I began to accept and embrace the realization that I wanted the world to accept and embrace me exactly as I am. I wanted the world to understand that my wheelchair is a tool of liberation, not a pathetic symbol of the need to be “fixed.”
All of us must decide where we (heh-heh) stand on this matter. Can you have it both ways – you know, fight for our rights while eagerly waiting for a cure? Yes, it’s possible. That’s pretty much where I stand now, but for me the urgency has vanished. I’ll take the cure if it comes, but I honestly don’t care if it doesn’t happen in my lifetime. I’d rather see the disabled gain a stronger foothold (heh-heh) in terms of societal awareness, acceptance and yes, even appreciation.
I’ve seen plenty of quads, paras and families so fixated on cure that they lead melancholy lives of constant disappointment. I find that far more tragic than the disabilities they so desperately want repaired. On a rigid psychological level, they’re locked onto elusive hope at the expense of a life that’s truly worth living.
Much better, I think, to find an agreeable balance – to embrace our disabilities and keep an eye on those researchers. Even staunch cure advocate Chris Reeve ultimately understood the need for a balanced perspective. Only when a real cure arrives will the hypothetical become real. When that happens, all of us are going to have some very big decisions to make.
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