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[personal profile] capriuni
Blogging Against Disablism Day, May 1st 2010

And: Why is the "Fixation on Cure" such a Morbid thing?

The Perennial Preamble, especially for the (temporarily) able-bodied who may be reading this:

Different disabilities are different, even though Society-at-Large lumps them all together under a single label. I have cerebral palsy; here is an explanation of what that means.

My life experiences and troubles are as different from those of someone who is Deaf (or blind), or with spinal chord injury, or chronic pain, or [...] as they are from someone who has been able-bodied all of his or her life. But, for all our differences, we do have one thing in common: Society-at-Large lumps us together into one club that none of us chose to join, and looks upon us with the same pitying and othering attitudes.

So, on days like this, we band together with more-or-less unified voices and say: "Ahem. Stop it."

The Body of This Entry:

One of my quirks:

When I fall in public, when there are witnesses, I laugh --hard. When I fall in private, I can swear up a blue streak that would make a truck driver blush. Why the difference? It's something I learned, and must have learned very early in life:

When you fall in view of the public, that public tends to panic (which is not at all helpful) -- unless you give an unmistakable sign that you are Fine, and Unhurt. Busting a gut, and dissolving into a puddle of giggles is one such sign. And so, as soon as I feel my center of balance slide out of center, I start giggling even before I hit the ground.

This is not unique to me; when I was a junior in college, I shared a dorm with another woman with C.P., and we occasionally swapped stories of how people panicked whenever gravity took over. One of her stock replies was to look up at the panickee and say: "... You know, He's my God, too..." We even considered compiling an anthology of Funny Falling Over Stories. We had a title all picked out: The Gravity of the Situation.

In the intervening years, I've come to understand that, in general, it's more traumatic to watch someone else fall than the actual experience of falling. If you're the one falling, all your attention is taken up with the process of getting up again, and dusting yourself off, so there's no room for angst. But witnessing someone else's pain (or what you imagine to be pain) allows you the luxury of all sorts of angst, and pity. And, like the sensation of adrenalin, these feelings can be addictive.

I think this is one reason why those with visible disabilities (especially disabilities of mobility impairment) get the majority of public attention, and why these disabilities are reacted to with an equal measure of pity, revulsion, and adulation which reminds me (now that I'm writing it out) of the Madona-Whore trope that women are routinely confronted with. But I think that's a topic for another day.

The iconic example of this pity-revulsion reaction, for me, was Christopher Reeve's speech at the Democratic National Convention on August 26, 1996 (and it's a bit sobering to me to think that many of the people reading this may be too young to remember this event). Maybe, someday, I will have written about this often enough that I will have nullified its influence on my mind. But I'm not there, yet.

At the time, Christopher Reeve was most recently in our minds as the image of Superman -- The Man of Steel. And he fell, and broke his neck, and so we were all confronted with the fact that Invulnerability is, like the character of Superman, a fiction. And so, he became even more iconic and influencial a public figure than he ever was walking the red carpet of his movie premiers. And he became the face and the voice for the "Drive for the Cure." And he was invited to speak at the Democratic National Convention in order to drive home the importance of health care, and health care research.

As he drew near his conclusion, he said:

(Quote) Research can provide hope for people who suffer from Alzheimer's. We have already discovered the gene that causes it. Research can provide hope for people like Muhammed Ali and the Reverend Billy Graham, who suffer from Parkinson's. Research can provide hope for Americans like Kirk Douglas, who suffer from stroke. We can ease the pain of people like Barbara Jordan, who battled multiple sclerosis. We can find treatments for people like Elizabeth Glaser, whom we lost to AIDS. And now that we know that (nerves in) the spinal cord can regenerate, we are on the way to getting millions of people around the world, millions of people around the world like me, up and out of these wheelchairs. (Unquote)

"[U]p and out of these wheelchairs." That was the whole thrust of Christopher Reeve's public drive for research into spinal chord injury: that he would walk by his 50th birthday -- the elimination of the visible evidence of disability. That speech had, as its subtext, the notion that it's our responsibility, as disabled people, to reduce the angst of those who might witness our falls. It reinforced the attitude that to come to terms with "living with a disability" is defeatist.*

But the thing is: that the goal of Absolute Cure, as noble as it sounds at first hearing, is as fictional as Superman. Improving the lives of the disabled by trying to eliminate the existance of disability is like trying to destroy the mythical Hydra by decapitating it -- every time you chop off one head, two more grow in its place. As science and healthcare improve, as rates of mortality decrease, rates of disability increase. For an example of this, just compare the casuality rates between the Vietnam War, and the Wars of Afghanistan and Iraq.

Research is needed. Improved healthcare is needed. But to pin all your expections of improved quality of life on the perfected treatment of disease is like promising "Always Jam Tomorrow, Never Jam Today."

This fixation on cure is understandable, perhaps, because it stems from an instinctive fascination with (and fear of) pain. But it's morbid because it draws attention away from the real situations lived by real people right now.

When I slip and fall, I do not need you to squeal and call 911. But I might like a hand up. And then, I'd like some room to continue on my way.

Thank you.

*(Note -- this seems to be the response only to visible disabilities. If you suffer an invisible disability, you're expected to buck up and deal with it quietly).

Date: 2010-05-02 12:59 pm (UTC)
From: [identity profile]
Beautifully said. And I like the God joke. I'll have to use that one. My own stock is running low.


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