I often get into this conversation with little kids:
KID: (pointing at my electric wheelchair) Why do you sit in that chair?
ME: Because I can't walk.
KID: (totally astonished) You can't?! Your mommy and daddy never taught you how?
ME: Oh, they tried, but my legs don't work right.
KID: Are your legs broken?
ME: Um, kind of... But they can't get better. That's why I have a wheelchair. Instead of walking around, I roll around.
With that, they generally ask me how to operate my wheelchair controls, and I explain it's sort of like playing a video game. Either that, or they start climbing all over my chair and I become an instant jungle gym.
For some reason, adults never ask such candid questions. On the rare occassions when they do bring the subject up, I start out a little differently. I explain I have a type of Muscular Dystrophy called Spinal Muscular Atrophy (SMA). If I'm feeling scientific, I'll add that it affects the anterior horn cells of my spinal cord, causing my muscles to get progressively weaker and weaker. Sometimes I mention this means I have a shorter 'life expectancy'; sometimes I forget to mention it and people get all upset when I off-handedly bring up my mortality a couple months later. In either case, I usually console them by letting them know doctors also misdiagnosed me with type 1 SMA instead of type 2 as a toddler and predicted I'd die by age 2. I also tell them people in different countries have different ideas on how rapidly SMA progresses, and that I know a number of SMA people that are a lot older than me.
After a few more questions, they generally ask me how to operate my wheelchair controls, and I explain it's sort of like playing a video game...
Last updated June 29, 2006.