Thursday, May 01, 2008

Who are these freaks?

It's Blogging Against Disablism day, and I actually have a post up for it!

Elizabeth of Screw Bronze! got me thinking more about how I see myself. And how, from my perspective, I'm absolutely normal. It's everyone else who is weird. What do you mean, you don't pick things up with your toes? You have a hard time with clothes that have back zippers and you can't scratch your own back without a tool? When something is just a little too far away behind you, you actually move back toward it instead of subluxing your shoulder and just reaching further? How freakish! I don't know how you can live like that.

MD and I were talking about this earlier tonight. We both find that we are surprised to learn how much most other people are built differently than we are. Last week, I learned that one of my sisters can't pull the skin on her shin away from the bone. See, I thought everyone could, but apparently, no, I'm the odd one. MD noticed that her husband's hands and feet aren't nearly as creased as hers. Again, it turns out that he's what passes for average. So that's "normal"? Who knew? Not us.

I suppose that if I were to wake up tomorrow with a "normal" body, it would be nice to not hit the wall of pain that immobilizes me if I can't rest. But I think it would be hard to get used to my new limitations and I'd probably end up breaking something when my body didn't give the way I have come to expect.

We started talking, MD and me, about how our being different and our family members and friends being different than us, is no big deal. On our own, or with certain family members or friends, we aren't disabled. Everything we need to do, we can do. We have what we need to do what we need at the pace we need. It's only in going out into the world that we find ourselves disabled. I'll find myself having to carry too much weight or bend over too often, and parts of me will start going numb from pain or subluxation. There will be heavy doors I cannot open, steps and ramps I cannot climb. Though most people can't look at me and tell that I am disabled, that door, that incline, disables me. MD is tall and robust looking. She also has a large side helping of autonomic dysautonomia to go along with her serving of EDS. So, yes, she does need to sit down. Right now. In fact, she's going to lie down for a moment. Offer her a seat, and she'll take it. Refuse a place for her, she's still going down.

To us, it all so unnecessary, these doors, those stairs, that lack of seating. We go to our respective homes, and the disability falls away. We are our own normal again. And we wonder, who are these freaks who design a world that disables people?

7 comments:

Chris said...

An intersting article! Thanks!

Girl, Dislocated said...

My perception of myself is so damn inconsistent. Sometimes I can completely relate to feeling more normal than non-EDSers, but other times I'm acutely aware of my body doing things it's not supposed to be doing. However, I've found that I'm more likely to feel "normal" when I'm not around other people (family, friends, or strangers).

yanub said...

Thanks, Chris, and thanks for piping up. I love getting the chance to "meet" new bloggers.

Girl, do you mean the "oh crap" awareness of feeling something tear? Cuz that violates my own body's sense of what is normal. However, the tendency of either or both feet (for instance) to not follow through on a step is a completely normal thing.

Girl, Dislocated said...

The "oh crap" moments will always dispel any sense of normalcy I have, but sometimes even the most mundane things that I'm used to experiencing (such as joint hyperextension, clicking, bruising, minor subluxations etc.)will sometimes make me conscious of the fact that my body's "not right." Not always, but sometimes. The only time that I feel "disabled" though is when I'm on the ground with a hip dislocation or when I can't climb stairs, carry things, or open doors due to a recent dislocation.

seahorse said...

Great way of turning things around. Yes indeed, who are these freaks?

saraarts said...

Oh, well said. Thank you very much.

I also feel that I become a freak or disabled when I leave my house just because of the way other people interact with me. At home or with friends, I'm just me, doing my stuff, living my life, thinking about art and my cat and what to make for dinner. Outside, I'm all kinds of other things, as perfect strangers feel free to let me know, and I am made to think about that constantly even when I'm not faced with a snowbank where there used to be a sidewalk or a ludicrously slippery floor.

Perfect strangers shooting their mouths off about what slot you fall into in their minds? Also freaks.

yanub said...

Girl, yeah, there are times when I too feel that something isn't right, but that is a something that isn't right within the framework of what I expect out of me. Like right now, with the mouth sores I have, that's a "not right" that came because of my allergies. But having the allergies and living with them, doing things a certain way because of them? That's normal for me. Taking short steps because I can't swing my legs fully anymore? Normal. Not being able to take a step because my ankles just went out? Irritating, but still normal. A new sudden ripping feeling along a joint? Well, crap. But the results of that will become the new normal.

Seahorse, thanks! Back before I realized that I am disabled, I would do crazy things like try to open a door in some fancyschmancy place, and the door would be so awkwardly weighted that I could barely get through it. I'd see some folks go through as if it was no obstacle at all, but anyone with an arm load or a slight limp or short or so on--the majority of people, actually--would have such a time of it I couldn't help but wonder how such a design got approved.

Saraarts, it's hard to believe that so many people will be so rude and thoughtless. And yet they are! I wonder if there is a special school for dis-ettiquette where they hone their technique?