Independent Living

I started life as a "regular" person, if you consider a preciously pretty middle-class white girl a regular person. For my fifth birthday I got a porcelain tea set; for my tenth, an emerald green racing bike and rheumatoid arthritis. Three hospitalizations, dozens of experimental drugs, and thousands of encouraging words later, I was in a wheelchair. At sixteen: a cripple. With all of life's possibilities far beyond my arthritic grasp. Or so I thought.

Because my image of disability was one of helplessness, I saw no options. I sat mired in self-pity in front of a television set until by chance (isn't it so often always by chance) I overheard a conversation about the independent living movement that was taking root just a few miles from my San Rafael refuge/prison. I simply had to face the fact that if someone as severely disabled as Ed Roberts, who uses a power chair for mobility and a respirator for breathing assistance, could manage to live on campus, hire attendents, and take charge of his life than so could Ms. Cheryl Marie. For the first time ever I had an image of a disabled person as something other than helpless; for the first time I had an image of a disabled person as an independent, dynamic human being with possibilities. Believing in the possibility of independent living was the first giant step toward reaching that goal.

Of course, nothing happens quite so smoothly as the movies would have us believe. One revelation does not enlightenment make. My physical needs still seemed awesome limitations. How could I who had been lifted, toted and wheeled for most of my life really learn how to be a grown-up? How could I learn to be alone? So I worried and wondered and got older, until I spun my wheels in the direction of other women and men with disabilities, who had survived their baptisms by fire, and by doing so had helped pave the way for my success. They shared their survival tools with me. They enrolled me in Dealing with The System 101. I became an excellent student. In no time at all I had an electric wheelchair prescribed by my orthopedist and paid for by Medi-Cal, and In-Home-Support-Services

had determined that I am, indeed, righteously crippled and entitled to survival aid. Hopeful and petrified I packed my gear and headed for my idea of Mecca——Berkeley. Who could want more than curb cuts on every corner and five million Chinese restaurants? Arriving in Berkeley at the age of twenty-nine, a gray-haired, cellulited teenybopper was certainly better than never arriving at all.

The first order of business was hiring a personal care attendent. I got lucky (this borders on the miraculous) and — I clicked with the first woman who applied for the job. Through hit and miss, we established my routine together. My morning and nightime routines soon became second nature to us both, except, of course on those days when needing any assistance seems an intrusion. But even at the best of times, I found it awkward to rely on attendents for daytime bathroom assistance. Where to meet, how to find accessible bathrooms, what to do if she got stuck somewhere.

It was over a year before I discovered a simple item that is as important to my independent functioning as my power chair and attendent care: a women's urinal. With this revolutionary $6 item, that very few people are aware of (could the low price be why) I can take care of my daytime bathroom needs without ever leaving my wheelchair. Of course every change brings change. It was necessary for me to become less self-conscious about my feet being viewed by the general public when my dress style was forced to go from jeans and adidas to skirts and Birkenstocks, and I've had to loosen inhibitions about not wearing panties. Now this last was no easy concession on my part. Having been raised a good Catholic girl, I wasn't sure a pantiless life would get me to heaven. In the end, however, earthly need willed out and I decided eternal damnation was not too high a price to pay for the pleasure of taking a pee when I feel like it.

Living independently has been and continues to be a struggle and a promise. On a bad day, when I compare myself to oter 38 year old women, I feel I have little to show for all the gray hairs and cellulite I've acquired. But when I consider that only nine years ago I had no other definition than that of dependent child, I can look at the man I've loved for eight years and smile, I can take pride in the respect I've earned as a teacher and counselor and I'm beginning to earn as a writer, and I can feel I am a poem, a song that celebrates life's possibilities.

And that, for me, is both the dream and the reality of independent living.