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The Question of Cure: Does It Matter?

July 16, 2013

FB profile (3)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.

Who was Jeff Shannon?

How did you react to Jeff’s post? Please share your thoughts below.

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7 responses to “The Question of Cure: Does It Matter?”

  1. Jack says:

    Great post, thank you. Trying to gain an understanding about: “desperately needed a direct, inclusive place in political discourse.” If you could explain more about that, it would be great. I.e., does that mean better ability to move about in public, etc.? thanks!

  2. FacingDisability says:

    Jeff Shannon responds: “What I mean about ‘a direct, inclusive place in political discourse’ is that the disabled need to be fully represented in politics, from small-town elections to the Congress and the White House. It’s essentially the same as saying “Nothing About Us Without Us,” which is the unofficial the catch-phrase of the disability advocacy movement. “Nothing About Us Without Us” means that from legislation to movies, music and TV, the disabled should be directly included in so we are fairly and accurately represented, as opposed to the distorted and often condescending images created by clueless people who view disability from the outside in, instead of including us and seeing us fairly represented from the inside out. (And yes, this also means pushing for greater access in public places.)”

  3. lisa t. says:

    I am with ya .. I very much enjoy your articles. You do what I want dearly to. Not enough kind words exist that might express how grateful I am that views are shared .. apreciated and not feared. I am a c-4 inc quad..2004 from a surgery that a sales rep was permitted in and decided to give a non patent cervical spine lead .. he was fully aware & told not to yet gave it to my surgeon and he alone changed my life . It isn’t that I lack quality .. its a different type of life. I’m very grateful for all I did experience .. good and bad it helped me on this later part of life .. yes .. I would go for that cure and I encourage all to move what can even if its in your minds eye …work that brain too. We must be ready .

    Same token I fear chronic… quads with more upper limits ..damages ..and us with other illness will be left behind . Not because its not possible ..I am possible .. yet science wants lessof a trail ..paperwork to be able to say .. we cured her by ….

    I do feel we should do trials on those with multiple cure needs. So much to learn from .. and for a grand finish cure the hardest condition . My complete heart block cured means I would get proper scans on my spine ..being pacemakers stop that possibility. To see what dr’s must get to often are blocked by science made stuff no one has yet to consider in cures .. will it render a life if other science is applied.

    My hope is that many schools will educate differently. Include illness ..how to handle them…be your own advocate .. teach what goes wrong in our very complicated bodies vs how to play ping pong in phys ed. Teach the truth parents were not taught. How they can speak and how to stand firm without rudeness or fear.. speak with passion ..conviction and empathy.

    As I approach 51 yrs of age .. I do so with hope to help at least one person .. on how to help themself.

    BTW You are a good looking man, Jeff! Your parents did good and you picked up nicely from your experiences . Take good care. Lisa

  4. Jeff Shannon says:

    Belated thanks for the kind comments, Lisa! It sounds to me like you’re doing a pretty good job of handling some serious challenges, and reaching out to help others is, of course, a noble goal. Wishing you all the best as you move in that positive direction.

  5. Miche says:

    Jeff: Like your comment about “Living for tomorrow and today.” I’m not a quad yet use a wheelchair due to a tethered cord. The majority of my life was spent walking yet now spinning at 40+. I’ve not appreciated the weight gain and am doing what I can to eat well and care for my body. Currently looking into a standing frame wheelchair–hopefully help strengthen bones today for a better tomorrow. Nutrition, health, and exercise are all integral factors to anyone in a wheelchair being and remaining healthy. Appreciate again your comment that we live for tomorrow and today. After all as human beings we deserve as healthy of a future as bipeds, yet we all make choices everyday that can brighten or dull our tomorrows. May we make the choice to brighten each day and each tomorrow by the decisions we make to be healthier and happier today! (My e-mail is attached, Jeff, if possible please write back for an offline question; thank you).

  6. Tami says:

    Jeff,

    I’m enjoying your blog. I am getting to close to 30 years in a chair and I see you are 34 years. Your experiences and viewpoint mirrors mine up in many ways. I attended the “Cure-Cons” with my mother too. The first 3-5 years were focused on finding a cure and participating in trial programs. Like you, gradually I lost interest because, if you are not a scientist, the readings and discussions are boring.

    Also, like you, I became a “Super-Quad” addicted to achievements. I’m not so “super” anymore but happy, nonetheless, with my life. And, I would jump in the opportunity to be cured again. I’m just afraid it would be a lot of work and might hurt.

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