7:31pm August 7, 2012

The Complexity of Disability

Lately I have been feeling like I am seeing less and less disability content pass by my Tumbies. I don’t know if that is because there has actually been a decrease, if I’m not looking in the right places, or if the loss of fuckthedisabled has just left that big a void, but either way I’ve been lamenting the lack. Eventually I realized that maybe I should stop surfing the tag for hours on end looking for content and, you know, contribute to the tag. So here goes.

As background in case someone other than my [number redacted due to embarassing small-ness considering how much I jabber here] followers reads this, I am 21 years old and have spastic mono/hemiplegic cerebral palsy with dominance (in strength and the length of my leg) on the right side. Google will tell you what those words mean really quickly if you don’t know. I say mono/hemi because although my left hand feels distinctly different from the rest of me in the same way my left leg does, it is fully functional.

One of the things I’ve encountered most in talking about my disability is that other people have a really difficult time understanding the complexity of it. They don’t seem to grasp the fact that when one piece of your body stops listening to you it affects every other piece of your body too, and that each task we have to adapt our bodies to can be confronted in a variety of ways.

In this post I’ve taken a body-related idea that has been circulating a lot lately (about how standing is much healthier for you in the long run than sitting) and tried to break it down, both in terms of the different ways I could approach it and the ways my body would react to each approach. It’s real long.

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Oh wow. That describes so many things I’m never able to explain to people even when I want to. I wish I could write things like that about the way I experience the world. Maybe I sort of do. But you get into areas I normally can’t.

(I have a crapload of diagnoses. They fall under the general (overlapping) themes of physical impairment, mobility impairment, movement disorder, cognitive impairment, emotional/psych stuff, chronic illness, and chronic pain. And when the broad categories take that long to explain, I don’t want to list the ridiculous number of diagnoses. Most of them run in my family.)

I don’t have CP but I’m 90% sure I know the bone-grinding sensation. I have no clue what it is but it’s thoroughly nasty.

And yes. For me disability means every single aspect of how I interact with the world is different: Cognitive, perceptual, motor, physical, everything. And each one different thing tweaks all those things in several directions at once. Added all together it’s like so much is different I sometimes feel like I live in an alternate reality from most people.

And people want it to be simple. They want it with a force I couldn’t understand. Last year someone demanded with a fair bit of hostility, to know why I could sometimes walk to a bathroom at home but never at the place I was visiting. And it had to do with distance, familiarity, having to turn corners, having to cross multiple thresholds, and a bunch of other barriers. All of which were invisible to this person. Who just seemed to want to get me to admit I was lazy. (Seriously what lazy person would rather wait for someone to wake up and get them into their wheelchair and push them a fairly short distance? Walking takes far less effort to able-bodied lazy people than all that does, especially when you have to pee.)

Notes: