Jesse Kaysen

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How I Learned to Stop Worrying and Love My Wheelchair

My body began falling apart a decade ago, and I had to quit even part-time paid work in 1991. Many joints, muscles and tendons hurt, so I am never comfortable sitting in a "standard" chair. I'm dizzy, and tend to fall over. My body can't tolerate exercise or repetitive motion: a stroll around the block requires an hour's rest while leafing through a magazine puts my hands out of commission for half a day. My brain, thankfully, developed a rapid-forgetting technique so I'm not overwhelmed by chronic pain. Unfortunately, this also means I may forget my topic in mid- sentence. After years of doctors saying it was all in my head, they now call it "fibromyalgia" or "chronic fatigue syndrome."

And so I've been led to change many aspects of my daily life. The first big change was denial, guilt, and self-doubt. I was sure that, if I only developed a more positive mental attitude, I'd get better. Now, I'm realizing this negative perspective results from our society's attitudes. In feminist consciousness-raising groups, I learned that women share guilt, self-blame, and learned helplessness because we share growing up in a society where female is not "normal."

I've come to understand that the American way of health adds to the pain of illness and disability: that "disability" is, like "femininity," a notion compounded of biology and society. Gallons of ink have been used to debate the correct terminology--I call myself "disabled" or "sick." (Euphemisms like "differently abled" or "physically challenged" sugar coat my experience.) But it is not just a word game, because it is hard to put on a filthy, tattered coat when you can hide your shivering.

I denied I was disabled because I did not want to accept the stereotypes that ride along with the label--and who would want to call themselves incompetent, worthless, imprisoned. It seemed easier to pass as "normal," even if that meant never being comfortable with who I was. At the personal level, any change, even a positive one, is hard to accept. Many of the changes associated with disability and chronic illness are no fun at all. In my case, I didn't want to develop a new body image, to feel pain, to relearn certain activities, to modify my pace. All these reluctances add up to a powerful engine of personal denial.

In addition to these interior messages, there are social ones as well. The most basic is: if you're sick, get better or die. If you're disabled or sick, it's your job to "overcome" it. The American individualist ideal is relying on oneself. In the popular imagination, disability and illness are defined as a struggle. Totally invisible in the past, the few media images of disability we now see are the "overachievers"--almost all male. We know that "superwoman" is a convenient myth that keeps so busy juggling work and family, we don't have time to analyze where society can be changed. Disability rights activists speak of the parallel burden of the "supercrip:" rolls in a marathon, dresses like Geena Davis, works 50 hours a week, and never gets nasty when discriminated against. Gracefully accepting changes in one's body is, well, weak.

However, some of us don't have that capacity to live at the edge of our limits. CFS has robbed me of precisely the ability to spring back. Our "be all you can be" society gives greater approval to the walking fool than the rolling sage. My denial made me a walking fool: it prevented my taking advantage of useful tools and services that in fact minimize the functional limitation of disability.

Thanks to years of activist effort, as well as smart politicking by legislators with personal experience of disability, America is becoming easier to use from a wheelchair. I now celebrate July 17, 1993 as my "independence day," because that's when I got my power wheelchair. It makes such a difference in my life! I now have a custom-fit, comfortable place to sit. I can go to restaurants or movie theaters without worrying about what sort of chair I'll find there. Snug and relaxed, I have more energy to bring to daily tasks. The less effort I spend walking, the more energy I have to think. I can again accompany my husband and dog on long walks around the neighborhood. Now I can travel the ten blocks to the bus stop, roll on the lift, and travel independently. I can go back to my favorite place on earth--the library--easily transporting pounds of books in the bag that hangs on back.

Perhaps the most interesting change is how others see me: I have a visible disability, and strangers more easily accept that I may not do things just like they do. Of course, some folks see the wheelchair as confining me, rendering me incapable of speech, independent thought, or any place in society. But my chair no more confines me than my eyeglasses obstruct my vision. I hope and work for the day when everyone who needs this remarkably useful tool can have it.

Jesse Kaysen loves every sort of language and code, from calligraphy to typesetting, ASL to ESL, BASIC to PostScript.
She's a woman-identified feminist who sleeps a lot and rides the bus.

© Jesse Kaysen, 1998

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