Friday, January 22, 2010

wanting to live a disability justice lifestyle


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via cripchick// blog by cripchick on 1/22/10

this month i am spending a third of my days travelling and sleeping in hotels. all of this is taking a toll on my body and i find myself stepping back and wondering why movements i could do the day before are not possible (i keep thinking: "ohmygosh this HAS to be what muscular dystrophy is supposed to feel like", hehe). my doctor — the only one i've ever trusted— is mad at me because i didn't take my medicine while traveling. i am dehydrated and my body is begging me for water and real food. on monday, i was in raleigh going down a hill i've been down a million times before. the possibility of losing my balance and tumbling out of my chair was such a real danger that i had to call a friend nearby to come walk with me. (and it's a good thing i called him, not only was my body draining but my chair died and he had to push me back to the hotel.)

i am thinking constantly about the contradiction and the space between wanting to live a disability justice lifestyle — desperately wanting to dismantle capitalist rules of productivity that leave out many of us and force us to give up our bodies and our labor for nothing that frees our communities— but also finding my life very rooted in a disability rights assimilationist model— i can do anything this other person can do, just need the right accomodations, just need more opportunities/laws/connections, just need to work harder… it took me 7 days of working in my first job to realize that no, i am not miraculously more productive than other disabled people in the organization, things were getting done because i had put in 80+ hours the first week to prove i was of value… funny thing is the only one in the org i ever needed to prove this to was myself.

and i have found that when i am at home, working part of the day from bed is the only thing that doesn't tear apart my body. but feeling well is hard to exchange for the fact that i type much slower in bed, that it takes me twice as long to do what i can do sitting up. i hate how that feels but i am trying to challenge myself to not just to talk about disability justice but live it— self care, interdependent relationships, questioning a system that asks me to give up my body/labor and otherizes me if i cannot. but it is hard.

this tied in with a few other things also has me thinking about what i know intellectually, what i know with my heart, what i know with my body. where those 3 things meet and what they look like. where desire, safety, intimacy fits in. it is all really confusing and i get lost easily.

here is to us finding wellness and joy in 2010. here is to listening to your body.


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1 comment:

presstitles said...

Awesome design . Creative mind.