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Finding Freedom

*In my first years of life, my mother carried me everywhere I went and no one thought it particularly strange given my age. When I was three, I got my first wheelchair. My mother carried me into a showroom full of wheelchairs, and the scent of new rubber tires, vinyl seats and metal frames filled me with eager anticipation. At least 50 wheelchairs of all shapes and sizes were lined up, shiny and perfect along two walls. I instantly recognized mine and shouted, "It's the blue one!" Being used to precognition, my mother promptly sat me down in the blue chair and found it to be a perfect fit. The salesman showed me how to push the wheels to make it go, and with my mother standing a few feet away, I put my hands to the wheels and pushed myself into her arms. I'd taken my first steps - independence at last - I was elated. But the chair brought with it my new identity, something much harder for me to fit, and even as we left the store and traveled the two blocks to our car, strangers looked at me sadly and shook their heads, pitying my mother, as we passed by.

I was five years old when I got a power wheelchair. My new chair was one of the first power chairs ever built, given to me for being the MDA telethon poster child. It was one size fits all - a tank for my 35-pound body. I had to yell to be heard over the hissing of the motors, and it moved so slowly even my great-grandfather had to make an effort not to walk too fast for me. The day they delivered the chair, I drove it to the end of our driveway and just kept going. When my mother realized I was missing, she jumped in the car and started yelling my name, eventually she found me two miles from home, sitting outside a gas station with my batteries dead - I'd never been happier. I was looking forward to showing off my new wheels on the telethon, but when I went on stage the spokesmen got teary eyed as they explained to the camera that I would have to spend my life in this steel cage.

I accepted the stigma of disability so gradually it's impossible to say exactly when the steel bars grew around me. There was something wrong with me, I was in valid, a burden to society, I didn't belong. I hid my shame, I kept trying to be OK, I pushed disability out of my life and cloaked myself in an armor of able-bodied friends. I was determined to overcome who I was.

In 1990, I spotted a man in a wheelchair promoting a new newspaper, Access Press. Being a writer desperate for publication, I took a copy and introduced myself to the editor, Charlie Smith. I leafed through the pages, noting all the articles on disability rights activism. When I was through, Charlie asked me if I had any suggestions for improvement. I said it was boring and needed something fun, a Dear Abby. He hired me on the spot.

Writing the advice column, I saw that worldwide, millions of people with disabilities were fighting social oppression and working to find pride in their identities. For more than a decade, Charlie taught me how to fight this battle, how to demand equality, and how to change bit by bit the world around me. With each victory over injustice my shame lessened and my pride as a disabled person grew strong. I loved Charlie because we were the same, we were both disabled, and with him I belonged.

In April 2001, Charlie died of cancer. A few days later, he visited me in a dream. In the dream, he was still using his wheelchair. I had believed that all physical problems ended with death, so I asked him why I couldn't see him beyond his chair. He said, "Because there's nothing wrong with it, there's nothing that is not me." I awoke with a start. Until that moment, I believed Charlie's greatest gift had been teaching me pride in my identity, but only his words in the dream had caused the steel cage around me to fall away. For an instant I was me, and I was everything that was not me. There were no more categories of being, no more fighting for equality, no more disabled person ashamed or proud and strong. I simply was, and in that being there were no cages of identity and nothing wrong. I smiled at my wheelchair parked next to the bed and thought how truly it was an instrument for freedom.

 

*Nicole's Writings *

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