Narrated version here
I’ve been out about everything else, may as well be out about this.
I’m physically challenged, disabled, differently abled. Specifically, I have a diagnosis of fibromyalgia and have since I turned 27 (a long time ago). I’d had the condition for close to 10 years before finally achieving a diagnosis in the time when we were told it was all in our heads.
Now, it’s getting more recognition, (thank all that is holy). Docs and scientists are doing more research on how to help us live better lives.
I read a thread on twitter today after yesterday’s disabled murders in Japan, and my gods. I literally gagged at the truth in it.
The writers experience of disability and ableist thoughts from others rang so true for me.
You see, I’ve been through the gamut of treatments and stop gaps and therapies. From heavy medication to exercise to eating regimes to new age therapies.
The people closest to me respect and love me, they see what I deal with and how I fight, every second of every day to have some semblance of a ‘normal’ life. (I’m not going there on how very ableist the phrase normal is, I know it, just pointing it out to those who may not. There is no normal, there really isn’t).
Yet… there is this pervasive concept EVERYWHERE, including from most of my extended family, that I don’t WANT to be healed, that I don’t take advantage of every option for ‘healing myself’. I’m supposed to do that you know? Heal myself?
Because… if I just put the right puzzle pieces into the right slots of my mind/body machine the fibromyalgia will magically disappear and I will finally ‘pull my own weight’. For anyone reading who doesn’t know, fibromyalgia is considered a life-long chronic pain condition. There is no cure, there is no magic wand and the only magic bullet that cures it has the number of the gauge on the case.
What is fibromyalgia? American College of Rheumatology Wikipedia
The ableist privilege behind the kind of thought pattern that can believe I can heal myself, that I’m not trying or fighting… and worse if you actually SAY it to someone already suffering is phenomenal. Mind boggling.
I would never in a billion years choose to suffer this. I doubt I’d wish it on my worst enemy for more than a moment, and only then so they’d understand. If there were a magic pill or a therapy that would work or a drug that left my mind intact (some days, all I have left is my mind, I’m not willing to give that up) that would treat this, I’d do it.
I can’t begin to express how very horrible it makes me feel when I’m told (I’ve been told this so many times) that I’m not trying hard enough, that I need to bootstrap myself, I need to do x, y or z…
I’d love to have my life back. I sincerely would. I’d love to be the kind of mom and wife I used to be able to be. Drawing attention to what I can’t do with ableist thought processes vs actually helping, just don’t… please. If you don’t know how to help? Ask. Listen to the answer.
I’m a living, feeling, giving person. I am a gifted writer, I am creative and wonderful. I am not that behind my diagnosis, I am not that in spite of my diagnosis, I am a person. I should be treated as such, not as a burden. Not as a problem to be ‘fixed’.
I shouldn’t feel like I should die just to make other people’s lives easier. I shouldn’t feel like I’m not doing enough when I’m already fighting an exhausting gods damned battle every second of every day.
Enough ableist privilege. Please.
Hell… can we just get rid of all privilege while we’re at it and maybe try listening to one another? Of trying on sympathy and empathy instead of hatred and isolation of those who are ‘different’? I guarantee you, we’re all some variety of human. We’re all thinking, feeling, beautifully unique creatures who need community and acceptance.
Could we try that instead of wallowing in our privilege?