My Story
From Where I Sit
In 1985, at age 35, I received a diagnosis of Becker's muscular dystrophy, one of many progressive neuromuscular diseases. This one shows up in adulthood and causes atrophy and weakness, first in the legs and later in other muscle groups.
At first I walked with a limp, then with a collapsible walking stick. When I finally had to resort to using a wheelchair, places that were once accessible to me weren't any longer.
Like many disabled people, I initially experienced this lack of accessibility as a personal shortcoming, even though I knew it was the result of a medical condition that was beyond my ability to control.
I saw the resulting feelings as a lonely burden I would have to resign myself to suffer in silence:
- The disappointment of being turned away from a restaurant because it lacked any wheelchair-accessible tables whatsoever.
- The embarrassment of asking diners to get out of their chairs so I could get to my table, then repeating the process when I left.
- The discomfort and humiliation of discovering I couldn't use a restroom and waiting, sometimes unsuccessfully, until I got home.
- The helplessness of being trapped in a restroom I was able to enter on my own but unable to leave without yelling for assistance.
- The jolt of panic at nearly being thrown from my wheelchair by an unexpected high door threshold or sudden steep exit ramp.
- The uncertainty of not knowing when entertainment plans might be ruined because a venue will turn out to be inaccessible.
- The discouragement of attending a daylong series of workshops only to find that I couldn't get into some of the classrooms.
- The frustration of trying to shop in a retail store with aisles that lack sufficient space to accommodate a power wheelchair.
- The anxiety of being jarred repeatedly during dinner because the path behind you is too narrow for people to get by easily.
- The anger of experiencing yet one more in a series of indignities or facing the same ones over and over again.
In time, I learned that most of the obstacles I encountered actually violated my civil rights and those of my disabled peers. I also discovered that we have an effective tool, the ADA, and that we must exercise our lawful rights if we want to help make the world more hospitable to people with disabilities.
Personal Consequences
Unfortunately, those of us who fight for disability rights frequently face unpleasant personal consequences.
We don't win any popularity contests. Our characters are maligned; our motives are questioned; facts are distorted and misrepresented in attempts to discredit our attorneys and us.
One defense attorney aggressively exploits my name and the names of others like me in an attempt to generate more business. By paying Google a fee, he ensures that an advertisement for his law firm comes up as the initial item in an online search on our names. This casts a shadow over our personal reputations and, in my case, over my professional reputation as well.
The misinformed might conclude that we are disreputable characters with nefarious motives who go around suing innocent victims. In fact, we are fellow citizens who are employing the legal remedy granted by Congress to uphold civil rights that already have been violated.
