What disability pride means to me
Being proud of my disability isn’t always easy and I know that it’s confusing to a lot of people. But it’s not about actually loving my disease or enjoying the experience of having muscular dystrophy.
Sometimes it’s hard for me to actually explain, because it’s a complicated thing that’s evolved throughout my life. But for me disability pride is:
Accepting my body for what it really is
My body is bent, twisted, and weak. It hurts all the time. And every year it has a harder time doing the simplest of things. But it’s also beautiful. It’s soft and it carries me through the world. I’m alive because of it, and while I can’t do everything, it’s more than enough.
Sitting around and wishing I could change the curve in my spine or stand up out of my chair is a useless way of making myself miserable. I’d much rather accept myself for who I am and be happy with the floppy legs I was given.
Celebrating a large part of my identity rather than fighting it
My disability has shaped who I am as a person. I’ve spent way too much of my life completely hating myself (as most girls/young women grow up doing) to continue hating a huge chunk of my identity. And I’m not willing to erase disability from my identity either. So that only leaves one option, celebrate it! Embrace it. I can’t change it so I’m not going to waste my life wishing that I could.
Loving my body, not it’s symptoms
I think some people hear ‘disability pride’ and mistakenly interpret that as me saying that I love everything about my disability and enjoy my symptoms. There’s a lot of really crummy things that come with muscular dystrophy. I don’t love muscle cramps. My contractions in my arms and legs are wildly frustrating. And some days I’d give absolutely anything to just be able to get out of bed by myself, hop in the car, and take myself out to breakfast.
I love my body and my identity, but I’m not saying that being disabled is a wholly positive experience. There’s plenty I don’t enjoy, but that’s no different from any other experience. You take the good and the bad. But with disability, it’s assumed to be SO bad that my positivity surrounding it throws people off frequently.
Refusing to let abled people determine the worth of my body.
Too much of the conversation surrounding disability comes from abled people. Parents, doctors, teachers. How often do you actually hear the discussion centered around disabled adults? People who understand what its like, who have been through the insurance battles, through the system of getting government assistance, searched for accessible housing and job opportunities?
There’s so much stigma surrounding bodies and lives like mine. So for me, a big part in being proud of who I am is doing my best and ignoring all of the misconceptions, hatred, disgust, and fear placed on lives like mine. My worth has nothing to do with any of that. No one else gets to decide what the quality of my life is or how valuable I am to society.
Being part of a community
I’m still figuring out how to find my place in the disabled community. It’s hard to find other disabled people near me, mostly because I honestly don’t get out of my apartment much. But even things like writing with my friend Sarah or finding vloggers with muscular dystrophy, things that seem small, make it feel like I belong to something bigger than just me. And that’s a really cool feeling. I try to appreciate it as often as I can. I don’t know if I’ve added all that much to the community yet, but I hope that I can change that eventually.
My relationship with disability/disability pride is often a complicated one. And I’m sure it’s different than others experience with theirs. But at the end of the day, being proud of my life as a disabled woman is a choice I made for my own well being and I’m so much better for it.