People have asked me – and continue to ask me – understandable, annoying, and sometimes downright rude questions. So, I thought I would answer them here, as I would answer them in person if I had the presence of mind rather than being caught unawares that an adult (or semi-adult) human being could even think it was somehow “okay” to say aloud.
What’s wrong with you?/What happened to you?
Well, at the moment what’s wrong with me is you asking what’s wrong with me. As for what happened to me, you’ll have to be more specific. Like, give me a date and time, or something. If what you really want to know is why I use a wheelchair, then: I was born with a genetic disability known as osteogenesis imperfecta, or brittle bone disease. Right in the name, you get the gist; I have extremely fragile bones, and they have been known to break while I was sitting perfectly still. (Seriously. You can’t make that up.) OI is pretty rare, but is gaining in popularity. By which I mean, some people have actually heard of it. There are several different types ranging from extremely severe to barely noticeable. I fall somewhere in the middle of the spectrum. Not everyone with OI uses a chair. Kid President, for instance. I love that kid.
- So, how many bones have you broken?
A lot. Really, lost count. (I once had an ER doctor ask me this while holding my extensive chart. I said, “A lot.” He left and never came back. I love scaring medicos.)
- OMG, your legs just moved!
Ummmm, yeah? Is that a question?
- You are so lucky you don’t have to…
Thankfully, this isn’t nearly so common as it was when I was growing up. (Mile runs, climbing stairs, etc.) I mean, if a full grown person said this to me, I would have to slap a bitch.
- If I was in your situation, I would just kill myself.
Why don’t you just go ahead and make life better for the rest of us? (So, no one has ever actually said this to me, which is good. See above, re: slapping a bitch.) Like, really? You think my situation is so godawful that you would rather be dead? What is it you think I’m lacking?
- Can you [fill in the blank]?
Short answer: Yep. Long answer: Um, yep. I mean, I’m never going to climb Mt. Everest, but neither are a whole bunch of perfectly non-wheelchair-using people. I also can’t really carry a tune, but I don’t think I could do that standing on two legs either. I have my limitations, of course. For example, I can’t arch my spine due to two spinal fusions and steel rods stretching from the base of my neck almost to my tailbone. So, gymnastics are out. If you think I can’t do something, pause for a sec. Can you do it? Okay, chances are, so can I. (And maybe even better!)
- But, your life has got to suck, right?
Yeah, sometimes. Sometimes it sucks hard. Like, trying-to-suck-a-boulder-through-a-straw hard. But, sometimes, it is fucking awesome. Like, getting to meet super cool people awesome. And, usually, the sucking is in some way related to the fact that world at large is inhospitable towards, and just can’t seem to make feel welcome, wheelchair users. But, just as usually, the awesome has nothing to do with the chair in any way, shape, or form.
- Aren’t you bitter?
Somehow, I developed a reputation for bitterness. I’m an artist; I’m moody and temperamental. I feel things very keenly. When I get angry, I get HULK SMASH angry. When I’m frustrated, you know it. And, I like to bring issues to people’s attention. Way back in my early 20s, I had the opportunity to work as a community columnist for my local paper. I got to write one column a month for one year. That’s just 12 columns. Twelve chances to bring to light what I think are important issues. And, yes, a lot of those issues are related to the disabled community, and, yes, most of those columns had a negative slant. (For the record, I know there are at least 4 columns that had nothing to do with OI or using a wheelchair, or the life of a person with a disability in any way.) But, I was trying to enlighten people to the obstacles faced by someone using a wheelchair. I was trying to educate. But, by pointing out that some things are difficult for people in my situation and similar, I became “bitter.” So, I throw my hands up and accept the mantle of bitterness with aplomb. Frankly, I just think most people don’t get my rapier sharp wit. Touché.