Wednesday, November 05, 2008

Disability denial

Drake, at Cloud Viper, talks about the trouble he has accepting that the body he has always known is a body with disability. One Sick Mother makes a really valid point (in the comments) about you not having had time to adjust after so many years of being encouraged to be in denial. Now you don't need to be in denial anymore; you can take care of yourself and learn to live in the body you have instead of the body that nondisabled people expect you to have. But all those years of denial are going to be a while in the getting rid of.

And even then, there will be times that you think to yourself, "Oh, I'm just a whiner. I'm not really disabled." I do the same thing myself. And then I get out of bed, like I did yesterday, putting my foot down to stand up, and I scream. And all day, people ask me what I did to cause my foot injury. And they look at me as if it isn't the most everyday thing in the world to injure yourself by standing up. And today? Foot is pretty much back where it is supposed to be.

Now, why, when you and I and OSM are so regulary reminded by our own bodies of just how unreliable they are, do we ever have a problem accepting that we are disabled? What difference does a diagnosis make? Nothing at all has changed in the way your body works since you got diagnosed. If a new doctor disputes the diagnosis, again, nothing changes. What's going on that we, and others around us, are resistant to the bleeding obvious?

I think there are at least a couple of factors. A very important one has to do with that damnable stick figure sitting on a half circle. Yes, that faceless, degendered symbol of disability the world over. Ever notice how s/he is always in the same condition, day after day, year after year? S/he never shows up for work with a foot working that didn't work yesterday, or eyes not working that worked only last week. And everyone knows immediately on looking that Handy Stickperson is Special. And, also, Handicapable. Good old Handy is completely healthy, just missing a part or two, or maybe with a nice injury that can be conveniently covered up under clothing. Handy plays wheelchair rugby or runs track. Handy does not need to spend weekends in bed, shaking from pain and in pain from the shaking.

You and me, buddy? We just need to snap out of it. Get with the program. See a shrink for Munchausens. Get right with God. Take a supplement. Stop being weak. But we aren't disabled, right? Because everyone's seen disability. And it is painted blue and uses a ramp and doesn't have people challenging its right to park in the disability spot. After all, those spots have the portrait of their owner, and we don't look like that.

People are always so helpful, screaming at us that there was nothing wrong with us other than being lazy, or stupid, or whatever the adjective of the day was. See how not-disabled we are when so many fine folks have taken it on themselves to call us fakers and complainers? And we agreed, didn't we? We accepted that we must be normal, since that seemed to be the most prevalent opinion. And then some doctor comes along and tells us that our normal isn't. So, who you gonna believe? Some doctor, or your third grade physical ed teacher?


Queen Slug said...

The 3rd grade teacher of course! I think Drake got a few minds going from his post, lol. I ended up posting on what his & your posts got me thinking about. It really is work to change your mindset from the years of suck it up to the fact there is actually something wrong.

Elizabeth McClung said...

You mean I don't have Munchausens, I thought it went automatically with whatever your disability was like EDS AND munchausens or Epilepsy AND Munchausens - I wonder how different the world would be if doctors and those who 'know' the answers actually spent the time trying to solve problems and make things more accessible, you know simple, caring actions. Sorry that your foot went out, and that you are having a ug day.

Abi said...

How very annoying that must be. I appear to be gluten-intolerant, but very frequently feel that I am probably just faking it. I wonder if maybe I am putting people out in order to get attention in some warped little way of mine. Mind you, when I couldn't breathe properly recently I thought that I was probably faking it. I don't trust my body very much, apparently!

I suppose that a diagnosis gives some level of credibility - someone who supposedly knows what they are talking about agrees with you.

And yes, I know that gluten intolerance isn't actually that much of an issue, that my concerns are trivial, and that my belittlings are few and far between (although I frequently get offered cake at work); I'm not actually sure I am qualified to respond to this. But hey - I've done it now. :-)

yanub said...

Abi, Drake did indeed touch on a perenially important topic for the disability community. I like the way you phrased it in your post, "up and down."

Beth, don't you think Munchausens should be the name of a tasty snack instead of a rare psychiatric condition that doctors diagnose far more often than it actually exists?

The crappy day continues, though now with just generalized pain everywhere instead of the surprising knife-like quality of a bone out of place.

Abi! Gluten-intolerance is a serious disability. Don't let anyone tell you otherwise. The people who say it isn't a problem have never been stuck all night after a flight where nothing but pre-made sandwiches were available in a regional airport with nothing available to eat but pre-made sandwiches. They've never been required to give up their lunch for a mandatory business meeting at a pasta restaurant. My wheat allergy is the one thing for which I have ever had to request an accomodation at work, and had to fight for. All dietary conditions are important disabilities that can only be "not much of an issue" if they are taken seriously.