when you sustained a nasty spinal cord injury at age 18 and 7 years later, there’s still no medical breakthrough to “fix” it.
so periodically you go through several-week intervals of constant pain and discomfort in the various joints on the side of your body what was affected the most, and you have to use make-shift solutions to make the pain a little bit less.
and you’re reminded (even more) of that fact that you are a disabled woman in a world with shit accommodations for people whose mobility is impaired and this is your body, you’re stuck in it, so fucking deal with it.
This reminds me of something I think about often: the problem with hope. I don’t have SCI, but there’s a lot of promising research in the pipes for my condition, too. And a lot of folks cling to the hope that those treatments will somehow help those of us living with it now. And then? Reality bitch-slaps you in the face. When things are good and the pain is low/managed, it’s easy to forget that this situation can be so challenging. Clinging to promises of medical breakthroughs (not that fembot007 does - I’m just riffing) makes crashing to earth that much more painful.
The corollary (which is more important, in my mind) is that if I live in a state of hope, I am implicitly devaluing my current way of being in the world. If I throw in my lot with those who want to fix me, I agree that something needs to be fixed — not the external world that never has enough van-accessible parking spots or won’t give me an eye exam in my wheelchair or is infatuated with touchscreen gadgets that I can’t adapt to use with switches — no, the problem is me, and fixing me will make all those conflicts disappear. This is called internalized ableism, and regardless of how we come to buy into it, far too many of us do.
I am learning to evict the ableism from my thoughts and beliefs about myself, and a big part of that (I’ve found) lies in living in the physical experience of the right now. Not in hope, not in fear, not in anger, not in my head and its ongoing commentary. Right now, my left leg feels like it’s on fire. So I feel it. I don’t hope it’ll stop soon. I don’t fear it’ll last all day. I don’t rage that it woke me up early on my one day to sleep in. I try (writing this makes it difficult) not to name it or describe it or judge it or compare it. It just is, in this moment. And then - oh! - in the next moment it has shifted a bit. The only way out is through, so I fully feel and associate (the opposite of dissociate) with whatever it is, whether it’s pain or joy or whatever. The more I associate with my experience, the more I fully embrace it as mine, the less room there is for judgement. And then, when that eye doctor refuses to treat me, I don’t spin off into “It’s not fair, why do they have to do this to me, what if no one will see me, I wish it was easier for me to transfer, etc etc etc.” I just call the next name on the list.
Or, as fembot007 might say, I just fucking deal with it. And in the process, I break a little more of the hold that self-judgements and self-hatred generated by the internalized ableism has had on me.