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Friday, March 11, 2011

Cure for SCI and Being a Bad or Good Cripple

Many people do not get why I think of myself as being a bad cripple. The moniker I have used is a puzzle. I always hear the refrain "but you are such a pleasant person". I am indeed a mild mannered though a bit intense person. Although it is impossible to ever really know, I would argue I am easy to be around. I truly value stability in personal relationships and in my life as a whole. Hence when my niece who is extremely disability aware hears me use the phrase bad cripple she cringes. I am a bad cripple because I am violating certain social norms. People with a disability you see are supposed to be miserable. We are expected to be constantly seeking out a cure. We should be spending all our time working toward this goal with various doctors and rehabilitation centers. These doctors are supposed to be brilliant, devoted to helping the less fortunate. The more exotic and innovative the cure the better we people with disabilities are perceived to be. Hence if you want to raise money and go to China for dubious stem cell treatment you will be lauded for your efforts. The risk involved and the long odds to success in terms of cure are not relevant. You are doing your best, searching out every possible cure and damn the risk you are going for it. You are a hero! Think Christopher Reeve as the archetype the media and society lauds--he was the classic good cripple. Who is the is the archetype of the bad cripple? People like me that express no interest whatsoever in cure. I am not against cure for spinal cord injury. Read that sentence again please. Such research is important and worthwhile. I support the efforts of researchers assuming they do not use images and notions of pity to raise money. At a personal level however, I find such research irrelevant to my life. Why undergo treatment that has no track record, the long term implications unknown, and results iffy at best. I am quite content with my crippled body. I like my body. Would I prefer not to be paralyzed? Of course. But I would also like to be stunningly handsome and am not. The simple fact is there is nothing i cannot do that a person who walks can do. Paralysis has not stopped me from getting an outstanding education, publishing my work, teaching, getting married (and divorced), fathering a child etc. All these ordinary experiences are thought to be out of the realm of people with a disability. Hence it is not paralysis that has been the bane of my existence but the way people react to my paralysis and wheelchair use.

I think we as American are more comfortable with the good cripple. The good cripple wants nothing more than to overcome his or her disability. The good cripple accepts that the normal body, the bipedal human body, is the cultural ideal. The good cripple accepts a socially inferior position in society, happy for a hand out and all too willing to exploit their diminished social status. Need to raise money? Just get up on stage and say I want to walk again. People will cheer your efforts and write check. Enter me, the bad cripple. I am, please brace yourself, happy. Oh, the nerve! Worse yet I do not have an interest in a cure for spinal cord injury. What do I expect? To be treated as a sentient being. I consider myself to be equal to my bipedal peers. This is a social afront. Why imagine the nerve? I expect the country to be accessible. When I confront needless architectural and social barriers I get angry. I have rights and I assert them. This makes me about as popular as Oliver Perez among NY Mets fans. No one wants to confront an angry cripple. He should be happy for society largesse. He should be pining away for a cure. He should not be upset we the almighty and powerful bipedal humans forget to include access. We are ever so sorry. Come back another day and if we deem it worthwhile we will make our facility accessible. My reaction is blunt: screw you. You are breaking the law and an old one at that. I do not want a hand our or charity, I want to be treated with equality and respect. Many do not know how to react to this firm assertion of my inalienable civil rights. The travel industry, in particular mass transportation, seems the most oblivious to disability rights.

What I find perplexing is why? Why are disability rights perceived to be different, vastly different to all other important civil rights we as Americans value. Separate in terms of race and education is a given. All are taught about Brown vs. the Board of Education Supreme Court decision. It is the bedrock of our public education school system. But how come separate is acceptable when it comes to transporting and educating children with a disability? I saw gross violations of the ADA at the public school my son attended, violations that impeded my ability to be an active and involved parent.

In one of my favorite memoirs written by a person with a disability Stephen Kuusisto's Planet of the Blind he wrote that "on the planet of the blind no one needs to be cured". Wow! Wow, not because of the beautiful prose but rather the affirmation of the civil rights of blind people and by extension all others with a disability. Kuusisto made this same point in a post at his blog Planet of the Blind yesterday. The post in question, Project 3000 and Post -Molecular Medicine at the University of Iowa's Institute for Vision Research, discussed cure, the medical model of disability, disability rights, and the care cure divide. He closed this post with a quote from his colleague Edwin Stone.

“Blind people need to go to the eye doctor for general ophthalmological care—blind eyes are still important eyes.
One day Ed said to me:
The evangelical disabled person might adopt the attitude, ‘Why do I need to be cured? I’m fine as I am,’ while the evangelical curing person might adopt the posture, ‘Why spend any resources on figuring out ways to accommodate visually disabled people? We ought to spend time trying to cure them,’” “It’s grossly inappropriate that these two concepts are so separate. There’s no reason we can’t pursue both—aspire to reduce blindness through surgical or medical treatments, while simultaneously being sensitive to the needs of people who are visually impaired and working to help them in every way possible.”

Amen, care and cure are not mutually exclusive. Kuusisto thinks this is taking place in ophthalmological care. I do not doubt his assessment. However, I would contend such a nuanced view has not extended beyond this field and is far from being accepted in the medical industrial complex. For people with a disability to be accepted as equals the medical model of disability must be rejected and a far more nuanced understanding of physical difference must be accepted. I do not see this happening any time soon when it comes to spinal cord injury. Kuusisto thinks this revolution is underway. Sorry but I disagree. I disagree because i have had way too much contact with the medical industrial complex lately from wound care to urological surgery. One theme, a constant, has been a gross lack of physical access and a social understanding of the nature of disability. Some of the problems are purely medical but the vast majority of obstacles are social. Simply put, access in the broadest sense of the term is not valued or desired. Much money is spent on what I call window dressing--what people with no experience or knowledge of disability think is important. Hence we get lots of electric door openers and a multitude of accessible bathrooms all located in the wrong place. Why are such errors made? Again, simple: not enough people with a disability are woven into the fabric of society. We have no voice when decisions are being made that impact us directly. This is a problem that will take many more decades to rectify.


Feisty Kitten said...

I couldn't agree more. I hate to say this, but another woman I am friends with online has EDS just like me. She's convinced that free radicals are the cause, and that changing our diets and curing ourselves of free radicals will make us better.

I just don't see it. EDS is a genetic flaw, one we are born with. There isn't a cure, and there never will be. Its not something they can go in and fix with surgery or treatment. Its something written into our DNA.

Frankly, I'm content to just live my life, and while I neither have my cane nor wheelchair yet (both of which I only need when not at home) I already know how much of a pain in the ass its going to be to get around with them. My city is far from disabled friendly. To my amusement, they have put in special rubber stubbed ramps on every street corner. All my wheelchair friends bitch about how impossible it is to get up these ridiculous things, and how in winter they're never cleared anyway so whats the point?

And the mall? Forget it. They don't have those little convenience power chairs like the stores do, and to get around in a manual chair with wrists and elbows as messed up as mine would be a nightmare. At best, I might be able to get a friend to push. Meh.

Matthew Smith said...

I've come across people with SCIs who have very divergent opinions on cure and what it's like to live with one. At one extreme, there was someone who hated talking of a "cure" and always used quote marks when mentioning the subject - I gained the impression that this person didn't like their body very much and was happy not to be conscious of it (because of a pre-existing, painful disability and a history of sexual abuse). At the other, I saw people saying things like "living with paralysis is a living hell" and "we want our cure NOW!", insisting that they were still disabled only because not enough research was being done.

Then the Gilderdale story hit the news early last year and I came across a group of people who really are living a hellish existence - constant severe pain, nausea, severe sensitivity to light, sound, touch and so on, and extreme intolerance to any kind of activity on pain of worsening all the previously mentioned symptoms (more here. If the SCI people think not enough research is being done, they should take a look at the situation of people with ME - next to no worthwhile research is being done anywhere, while people lie suffering in dark bedrooms for years. It's a really horrific situation.

Anonymous said...

Feisty Kitten- Right on! My stepparents live in Omaha, & I've never seen a city that's less accessible. BTW, if we're ever in Omaha at the same time, contact me & I'll be happy to push you-that whole city is ridiculous! However, I will want your help in buying shoes & trying on make-up.You sound like a woman of exquisite taste & I would welcome your opinions.
Dear Bill, by “bad”, I think you mean “uppity”, which I see as a good thing, but then, I'm an uppity wench-translation-radical feminist. As my Grandma said, feminism is the radical notion that women are people. BTW,I'm straight but not narrow, read: heterosexual but open & accepting of people with differing sexualities. The more I read about disability studies, the more I'm convinced that its aims & goals are exactly like those of feminism- people with disabilities want to be treated with common courtesy, dignity, & respect for their abilities. Why is common courtesy & common human dignity so uncommon these days?

william Peace said...

Feisty, I suspect you will be pleasantly surprised when you start to use a cane and wheelchair. These are empowering pieces of technology. People of course do not perceive them as such but that is exactly what they are. And I think a cane can be pretty sexy for a woman. One last point: why would anyone want to go to a mall to begin with? The only thing that can be done there is spend money.
Cait, Yes uppity and bad are the same. I have been accused of being uppity often. Imagine I have the nerve to think I am equal to others that walk. Our aim in disability rights is indeed the same as any other minority group. And yes there are many similarities between feminism and disability rights. Too bad most people do not get this fundamental point.
Hey lets give Nebraska a break. I drove through the state and found it a pleasant place to visit.

Feisty Kitten said...

Cait, you're on! I know from friends how important a knowledgeable pusher is, haha. I suspect I'll be training my friends for the times when my arms are injured or tired. I'm pretty lucky though, I have some really awesome friends. While on my crutches, one of the stores we went to the stupid scooter broke down, so she DRAGGED me around on the dead scooter. It was pretty hilarious, to say the least.

William, haha. I do not go to the mall for the usual reason. It has a GameStop, for one, and a Food Court, for two! I may be a small woman, but don't let the giant appetite surprise you! Also, I'm a video game addict. My best girlfriends love to shop, though, and I enjoy the company and being out of the house. It'd be nice, though, to not feel like my feet, ankles, knees, and hips, are all going to explode to do so, though. Not to mention that I do so love to intentionally make a spectacle of myself. I'm outspoken and frankly, I'm well.. Feisty!

Nebraska is a great place to drive through. We have some of the cleanest rest stops! (I learned this after driving to Florida. Alabama, Tennesse? FILTHY!)

Unknown said...

So true! Brilliant article.

Like this part in particular:
"The simple fact is there is nothing i cannot do that a person who walks can do. Paralysis has not stopped me from getting an outstanding education, publishing my work, teaching, getting married (and divorced), fathering a child etc. All these ordinary experiences are thought to be out of the realm of people with a disability. Hence it is not paralysis that has been the bane of my existence but the way people react to my paralysis and wheelchair use."

It isn't disability that needs fixing, it's society. Quite a big task!

Anonymous said...

Although I am not cripple in the same way you are. I too have disabilities and I too am see as a "bad cripple", because I am not miserable and I live my life to the fullest.