I will not answer the question "what is wrong with you?" there is NOTHING wrong with me. I am just having to live my life a little differently. I will, however, answer "what happened?" most of the time. When i do not want to answer it, I just say "oh, its a genetic thing" and let them fill in the details for themselves.
What drives me crazy is when people feel the need to say something to "make me feel better." I do not need comfort from random strangers. in fact, all it does is remind me of my illness and make things worse. I also can't stand when people say "you've got it made - you get to roll around all day!" (actually had someone say that to me in Best Buy!) What i wanted to say was "Yeah, I have this wonderful neuro-degenerative disease that means i could lose the ability to walk at all, or speak clearly, or even control my bladder. I have it made! I get to pee my pants!" I did not say that, but people think they're being cute or funny or comforting, and in fact all they are is annoying or rude.
I don't mind answering kids questions. Cause if you make kids comfortable with people with disabilities, then they may grow up to be conscientious, non-idiotic adults.
Here are two examples of kids who are plainly comfortable with people with disabilities:
When I was in IKEA, I was in my wheelchair and a 5 yr old (or about that age) twisted in his grandma's arms to look at me after i passed. I don't mind kids staring (i'm sure I did at that age), but I turned back around, and he caught my eye and yelled "You have MICKEY MOUSE!!!!" I have a Mickey patch on the back of my chair, and THAT is what excited him. he could have cared less about my wheels.
when I was coming home from disney last time I was in the
disney store in the orlando airport and a little girl of 6 came up to me (her name was hannah i think) and she had lost her mom. she never asked or made a comment about my wheels, just asked me to help her find her mom. I don't know if I looked like someone on sesame street or something, but she knew I could help her find mommy and couldn't care less about my wheels. it was SO cute.