My Wheelchair, My Champion

Following up on my previous post, I wanted to mention something that has been bothering me. The other day, I was watching tv, and a documentary came on called, "The Woman With Half a Body." Now, after doing a bit of research, I found that there are actually a number of documentaries that have been done about this woman, Rose Siggins. Let me preface this by saying that after seeing some other interviews and shows with Mrs. Siggins, I deeply respect her confidence, her attitude about life, and her willingness to (excuse my language) stick it to The Man to do whatever the heck she wants.

Nonetheless, when I watched the TLC/Discovery Channel "documentary," and before I had done my own research, I was deeply troubled by a number of things. First, I was shocked by the title. If I EVER had a documentary made about me, and the producers named it "Girl Whose Legs Don't Work," or "Girl Who Has Deformed Hands and Feet," or pretty much anything along those lines, I'd make more money off of the lawsuit than the film. But putting aside the obvious, I was also perplexed by the fact that Rose does not use a wheelchair. She gets around by either walking with her hands, or pushing herself on a skateboard. In one interview, she talks about how she is afraid that if she gets arthritis in her arms, she'll have to be "fitted for a wheelchair," which apparently is a fate worse than death.

I am usually the first person to reject contraptions and machines in favor of finding my own creative solutions that do not require gadgetry. When I was a child, the physical and occupational therapists were constantly trying to outfit me with neat little inventions to help me be more independent. I remember this machine that was supposed to help me feed myself, since I can't lift my arms up to reach my hand to my mouth. The machine had a place for me to set my arm, and then it would swivel to the plate, where I could scoop the food with my spoon or fork. When I was ready to take a bite, I could swing the bar around and reach my hand to my mouth. Pretty neat, huh? A young girl can finally eat on her own with the help of the Xyzabc patented gadget! I was not impressed. I renounced that machine with all the forces a four-year-old could muster, and my abiding parents agreed to send the gadget on its way if I found a way to eat on my own, which I did. I was quite the insightful little girl, since now I can't even imagine trucking a spoon-lever contraption around with me to every restaurant I frequent.

Still...rejecting a wheelchair? That's just crazy! I mean, at no point did I say, "Mommy, I will not use a wheelchair from now on. I will crawl to school! On the ground!" The thing is, I think that the fact that someone like me doesn't see the chair as a sign of selling out, or giving in, is a good thing. If I could get around on a skateboard, sure, I might be able to get to the upstairs level of my favorite bars a bit easier, but it would be triply difficult to gain any kind of social acceptance. How would I go to job interviews? How would I use the subway? People are fairly accustomed to seeing wheelchairs, and I truly believe that if you happen to need to use a chair, your attitude and confidence can overcome the discomfort of probably 90 percent of the population. And the other 10 percent--well, doesn't at least 10 percent of the population believe that we never landed on the moon? The point is a wheelchair isn't - and doesn't have to be - a political statement, a stigma, or more than even a brief mention. On the other hand, the idea of a person crawling, or even riding, on the ground troubles me.

Is that unfair? Shouldn't I just appreciate the fact that Mrs. Siggins wants to use her natural mobility and doesn't want to be confined by a contraption, just like I didn't want to use the spoon-lever gadget? I don't know.

In my queries, I also ran across a related, interesting, and also disturbing, article in New Mobility. Gretchen Schaper, a paraplegic, did an experiment for her college honors thesis. She abandoned her wheelchair and crawled around campus to her classes all day. In the article, she discusses how people tried not to stare at her, and basically how everyone on campus seemed so freaked out that nobody would talk to her. I guess her mission was to "expose" her disability by unmasking her body from the protection of the chair, and at the same time invoke a deeper appreciation for wheelchairs by proving that they are instruments of freedom rather than contraptions to fear. If the latter was her purpose, I'm sold. But I didn't need anybody to crawl around all day to convince me of that.

I have been trying to figure out just why these two stories disturb me. I am not by nature a judgmental person, and I admire anybody who is willing to accept and champion her body and her existence--disability and all. The problem is there is something about crawling on the ground that seems degrading. Seeing somebody else who has a physical disability, who somehow represents me, on the ground makes me nervous and uncomfortable in a very personal way. I am afraid that it exposes me in a small way--showing the public that if you stripped me of my one and only oh-so-powerful contraption, I too would be relegated to the ground.

Sure, it might seem hypocritical, but I will continue my righteous rejection of gadgets and contraptions, and yet I'll still be an unabashed advocate for wheelchairs.