I’m always of two minds about discussing my disability—online and elsewhere. I see it as being like those Saturday afternoon specials that came out when we were kids. The minute that the girl in the wheelchair rolls into the episode everyone goes “aha! This is the episode about disability”, which is definitely not what I’m about or what this blog is specifically about. At the same time though, if I roll out onto this virtual stage and don’t make any comment on the fact that I am in a wheelchair, then it becomes like the proverbial elephant in the room. People are naturally curious and I don’t want to make it seem like I’m avoiding the topic because I’m uncomfortable with it.
Thus, in that spirit, here are the answers to some of the questions that you might have, but were afraid to ask. For entertainment value, the headers represent comments and sentiments I’ve heard from strangers over the years—some of whom had less tact than others.
Even before the wheelchair, I think my height turns heads more than anything else. I am about 3’7″ tall and I topped out at this height when I was about 13 or 14 years old. While I am hardly the smallest person out there, I do in fact have something in common with some of those counted as being the shortest living humans on record. We all share a condition called Osteogenesis Imperfecta.
Wait, I’ve heard of that! Wasn’t that what Samuel L. Jackson had in Unbreakable?
Yes… sort of. While the movie did put a famous face to what is in fact a very rare condition, it wasn’t what I would call a terribly accurate image.
Osteogenesis Imperfecta (also known as OI) is genetic disorder that literally means “bone formation imperfect”. To be precise, OI impacts collagen which is used throughout the body in bones, muscles and so on. If you can imagine a bone as being like reinforced concrete beam, the calcium in the bone is the concrete and the collagen is that iron reinforcement. In my bones, it’s like someone has come along and snipped apart that reinforcement making the structure more brittle than it should be.
That part of Samuel L. Jackson’s character of Mr. Glass in Unbreakable was accurate, however my big beef with the movie is that for his character to be as fragile as he’s made out to be then he’d have to be far, far shorter than even I am. This is because OI comes in eight different types that vary in severity from someone like Mr. Glass who might break a bone from merely a hard knock to someone who was never diagnosed with OI but had a few extra fractures as a kid. That range in severity though is linked closely to height; the shorter you are, the more fragile you likely are.
That said, it’s probably a blessing that people with severe OI aren’t as a tall as Samuel L. Jackson’s Mr. Glass. All that extra height and weight, if they ever took a fall they’d probably shatter every bone in their body.
So have you broken lots of bones? Did it hurt?
Yes, I have broken a lot of bones and yes, it really does hurt. If you’ve ever wondered what a broken bone feels like, it’s a very specific kind of pain. Muscle pain is very long and diffuse whereas a fractured bone is knife-like in its precision. Breaking more of them doesn’t make them hurt any less. About the only thing it does is give you a fairly good idea of what’s happened even before you’re rolled in for an x-ray.
I have what is considered moderate-to-severe OI. Definitely not the most severe type of OI as most of the people I know with the condition are both shorter than I am and have broken far more bones. Some people with OI keep a tally of exactly how many fractures they’ve had, but I never saw the point in that. I would guess over thirty, but that would only be a guess.
For whatever reason, bone fragility in OI is at its most severe at birth and the bones seem to toughen up with age. As a kid I was averaging one or two broken bones every year. These fractures were usually in long bones like my thigh bone or upper arm. At puberty however these types of fractures stopped almost entirely and now it takes more extraordinary circumstances to result in a fracture. Certainly I still have to be careful to ensure I don’t injure myself, but (*knock on wood*) as of this writing I’ve been fracture-free for eight years.
If you pray, you will be healed
Yes, strangers have said this to me and no, I’m not including it to mock religion, but to illustrate what I consider to be a key point on how I relate to my disability. This is not how every disabled person relates to their disability, but it is how I relate to mine.
99.9% of the time I don’t see myself as disabled. The 0.1% of the time that I feel “disabled” is when I’ve actually injured myself and I’m not able to function at what I consider to be normal level of physical capacity. My normal level of physical capacity includes using my wheelchair to get around, making my meals, cleaning my apartment, walking the dog, etc. etc. Anything that prevents me from undertaking my normal daily routine therefore “disables” me—just as any injury that would prevent you from doing all the things that you normally do would also “disable” you.
This is why the notion of some higher power coming along and healing me is somewhat perplexing. To borrow from Lady Gaga, I was born this way and have known no other life than the one I have. I consider it as much a part of me as being born half-Asian and half-Caucasian with brown hair and brown eyes. Sure, there are times when I encounter inaccessible barriers—or attitudes—that will irritate me, but I don’t walk away from those situations wishing that I was different or healed in some way. If anything, I will simply wish that those external factors were different.
The problem isn’t that I use a wheelchair. The problem is that your office or restaurant or dance hall is only accessible via a flight of stairs.
Seriously, if I had a nickel from every guy who wanted to “pimp my ride”, I’d be richer than Bill Gates.
Some quick facts and answers to common questions about my wheelchair:
- Model: Quickie Xperience … yes I know, so many dirty jokes… so little time….
- Cost: Over $26,000… although my current one has more bells and whistles than your average model.
- Top speed: 6.5mph… if you think that’s fast, my last chair was 8.5mph.
- Battery life: 2 days, but that’s pushing it. I usually charge the chair every night.
I think of my chair the way I think a knight might think about their faithful steed or a car enthusiast thinks about their beloved corvette. People tend to only see the negatives when it comes to using a wheelchair, but those people have also never zipped top speed through an empty shopping mall, weaving in and out of the pillars as close as possible. I imagine it’s what Harry Potter might feel like gliding around on his broomstick. In any case, it’s a lot of fun.
And who knows, maybe someday you will know what’s it like too. I’m not wishing anyone ill will here, just acknowledging the reality that even those who currently count themselves among the ablebodied now may in the future may become less able. Maybe they’ll need a cane or even a scooter or wheelchair when they get older. After all, you are only ever temporarily ablebodied.
I actually think that when it comes time for all the baby boomers to need wheelchairs, not only will rocket boosters become an available option, but voice-activated GPS navigation as well.
Personally, I’m just waiting for the iPod jack.