The day I became invisible

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When was the first time you let yourself feel
the injustice that was happening to you because of your disability?

From: Susie Kamp
E-mail: smkinmn@aol.com
Date: 24 Apr 1998
Time: 06:41:16
Remote Name: ww-tp03.proxy.aol.com

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I pulled into our heated garage after the forty minute drive home from work; still shivering from the bitter arctic winds that ravage Minnesotans during the middle of February. I agonized at the thought of venturing back out into the frozen tundra, but Phillip and I promised to visit with a friend that evening. Between sips of hot tea, I held my still icy hands over the steaming cup, trying to regain circulation in them. I decided to change clothing, bundling up in as many layers of wool as would fit under my parka. As I scrounged through my closet I experienced a strange sensation in my thighs. They felt suddenly fatigued, as though I'd just completed four sets of leg presses at the gym and had worked them to exhaustion. It lasted throughout the evening, then dissipated; until three months later in May 1996.

The sensation which visitied me briefly on that cold February day became a permanent resident whose presence would grow more ominous with each passing day. By June, I could walk only several yards before my legs gave out. Brushing my teeth became a laborious and often frustrating effort. Just three months earlier I jogged four to six miles per day, lifted weights three days per week, swam, played ball, and ice skated regularly at a nearby indoor arena. Inside my body lurked an enemy called fsh muscular dystrophy. Knowledge of the disease would remain a mystery to me for more than another year, while its insidious effects became all too well known. Unable to ambulate, I grew increasingly isolated. I rejected my only means of liberation; a steel-framed chair with wire wheels.

After a couple of months of self-imposed sequestration, and at the urging of my husband, I accepted that I needed to participate in life again. One of our favorite annual antique shows was taking place at a nearby arena. I would view it from an entirely new perspective: looking up at the interesting treasures that I once peered down at from my 5-foot 7-inch frame. Learning to maneuver a wheelchair down the narrow aisles and around tight corners required greater skill than I had anticipated. And while this consumed much of my attention--nervous I might take out some priceless display--it was not so distracting that I failed to notice a distinct difference in my encounters with other people I hadn't previously experienced.

Friendly and outgoing, with a twinkle in my eye, I elicited conversation with complete strangers wherever I ventured. It would take Phillip and I forever to get through an antique show, or even the grocery store, thanks to my long drawn out discussions with just about everyone I'd meet. When we arrived at the arena, Phillip teasingly lectured me to curb my tongue and focus on hunting for treasures. "You don't have to learn the entire life story of everyone you meet, Susie," he asserted. But my encounters were decidedly different on this occasion. The eyes of strangers I passed no longer met mine. The opportunity to strike up conversation with other antiquers did not present itself. I felt invisible. And even lonely.

My frustration grew at not being able to reach, or even see, many of the items displayed in booths; some exhibits so cramped I couldn't get near the tables and shelves with my wheelchair. The most distressing incident, however, occurred as I was gazing upwards, admiring a beautiful antique glass candy dish. The woman tending the booth walked over to me, telling me to let her know if there was anything I would like to see or hold. Her stilted words poured out in slow motion, each with a long pause inbetween, her volume increasing until I could barely contain myself from telling her she didn't need to shout at me. She nodded as she spoke to me, patting my hand which lie resting on the arm of the wheechair. Her choice or words seemed unusual for a conversation between two adults. And I suddenly flashed back to the way Mrs. Anderson, our elderly next door neighbor, spoke to me when I was a child. Anger welled up inside of me and I wanted it to spill out but felt paralyzed; the words refused to come forth.

Aside from the loss of many physical abilities, with which I still struggled, I suddenly faced the reality of how many things had become inaccessible to me; how difficult--and sometimes impossible--ambulating in a wheechair became. The bathrooms were designated with handicap signs, but how was one to open the large and heavy doors to enter the bathroom? And people! The people whose eyes once met mine with interest and intrigue, who spoke to me about their life or families or the Middle East or the most recent art exhibit downtown, now passed me by unnoticed or spoke to me as though I were a small child. Although I have endured greater injustices during the past two years since becoming disabled, my experiences that first day in a wheelchair at the antique show became my shocking introduction to the injustice and ignorance of an able-bodied society which no longer considered me an equal participant. This experience and others, however, became the impetus for me to assimilate with the disabled community and to work toward educating general society. I refuse to remain an invisible person in the world in which I'm still a viable force and resouce.

Re: Disability and Injustice

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