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.
Showing posts with label disabilities. Show all posts
Showing posts with label disabilities. Show all posts
Friday, September 14, 2007
Thursday, September 13, 2007
Introducing Nora Wiles: Aspiring Inspirational Celebrity
It's about time I introduce myself to you, aside from my silly childhood (and speeding) stories. My name is Nora Wiles, and I am an aspiring inspirational figure. Seriously, I've got most of what is usually required: a severe physical disability (read: lots of challenges and barriers to overcome), an impressive resume and cadre of accomplishments (read: overcame lots of challenges and barriers), a stellar personality, and don't forget my striking good looks and humble persona! I'm ready for the circuit--book me soon, before I get too famous.
I've known a number of people with truly remarkable stories, who faced many more challenges than me and who should rightly be admired, who did just that. One woman wrote a book about her life after her car accident and the barriers she overcame to go to college and graduate. She got her own Lifetime Movie! The first quadriplegic to graduate from an Ivy League college which shall remain unnamed. She gave the class speech at graduation and enjoyed a standing ovation. I graduated three years later, and guess how many newspapers covered the second (quasi) quad to graduate? That's right. Zero. Unless you count the little mention in the "Announcements" section of my hometown paper (circulation: 300). It's ok. I'm not bitter. The fact is that I spent my entire college career trying to show that I was just like everybody else. Nothing to see here, folks.
The problem for me is that I know growing up I would have greatly benefited from seeing the success of another woman who used a wheelchair. Someone who had already laughed in the face of those logistical and social challenges that I would soon encounter. But I wanted to see somebody whose life achievements did not necessarily center around her disability. I didn't just want to look at her and say, "Wow, she uses a wheelchair, and look at all she has done." Rather, I wanted the kind of role model that I could look at and think, "Wow. I would like to be her. I would want her life." And even better, I wanted to see somebody who other girls, with and without disabilities, would look at and say the same thing.
That has been what I have aspired to. I have always wanted to inspire people and give young girls with disabilities hope and confidence. But I wanted to be somebody who they would like to be. Somebody whose life looked appealing enough for all people--with and without wheelchairs, disabled and not--to envy.
Of course, I do not in any way think I have achieved this. I am happy with my life, and I'm proud of what I have done and what I plan to do, but I am only twenty-six. It would be pretty darn presumptuous to assume that scores of young'ens would die to read law books, play Texas Hold Em, and eat peanut butter sandwiches all the time like me. All I said is that I aspire to be cool enough to be that woman.
The point of all of this is that I want this blog to be a way to inspire people, not by lamenting the challenges I face, but by showing how much I enjoy my life. Sure, there are realities that must be addressed. I have to figure out how to find enough people to help me so that I can live on my own. I have to swallow my pride and independent attitude sometimes to ask strangers for help. But those are just incidentals that add to the crazy, funny, exciting story that is life.
One caveat, though: If someone out there wants to offer me oodles of money and a healthy residual income, or if you can help me meet Matt Lauer, I am a highly qualified inspirational speaker, talk show guest, author, and/or star of a TV movie. Please see above (para 1).
I've known a number of people with truly remarkable stories, who faced many more challenges than me and who should rightly be admired, who did just that. One woman wrote a book about her life after her car accident and the barriers she overcame to go to college and graduate. She got her own Lifetime Movie! The first quadriplegic to graduate from an Ivy League college which shall remain unnamed. She gave the class speech at graduation and enjoyed a standing ovation. I graduated three years later, and guess how many newspapers covered the second (quasi) quad to graduate? That's right. Zero. Unless you count the little mention in the "Announcements" section of my hometown paper (circulation: 300). It's ok. I'm not bitter. The fact is that I spent my entire college career trying to show that I was just like everybody else. Nothing to see here, folks.
The problem for me is that I know growing up I would have greatly benefited from seeing the success of another woman who used a wheelchair. Someone who had already laughed in the face of those logistical and social challenges that I would soon encounter. But I wanted to see somebody whose life achievements did not necessarily center around her disability. I didn't just want to look at her and say, "Wow, she uses a wheelchair, and look at all she has done." Rather, I wanted the kind of role model that I could look at and think, "Wow. I would like to be her. I would want her life." And even better, I wanted to see somebody who other girls, with and without disabilities, would look at and say the same thing.
That has been what I have aspired to. I have always wanted to inspire people and give young girls with disabilities hope and confidence. But I wanted to be somebody who they would like to be. Somebody whose life looked appealing enough for all people--with and without wheelchairs, disabled and not--to envy.
Of course, I do not in any way think I have achieved this. I am happy with my life, and I'm proud of what I have done and what I plan to do, but I am only twenty-six. It would be pretty darn presumptuous to assume that scores of young'ens would die to read law books, play Texas Hold Em, and eat peanut butter sandwiches all the time like me. All I said is that I aspire to be cool enough to be that woman.
The point of all of this is that I want this blog to be a way to inspire people, not by lamenting the challenges I face, but by showing how much I enjoy my life. Sure, there are realities that must be addressed. I have to figure out how to find enough people to help me so that I can live on my own. I have to swallow my pride and independent attitude sometimes to ask strangers for help. But those are just incidentals that add to the crazy, funny, exciting story that is life.
One caveat, though: If someone out there wants to offer me oodles of money and a healthy residual income, or if you can help me meet Matt Lauer, I am a highly qualified inspirational speaker, talk show guest, author, and/or star of a TV movie. Please see above (para 1).
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