Accepting Disability

From: Social Skills for Autonomous

From: Social Skills for Autonomous


Quite often, I am told (in one way or another), to “accept” my Ehlers Danlos…

Fuck. That.

At least, fuck that in the way that most people mean “accept”. Most people (usually those without a disability of their own, but also quite a few with other disabilities who do not know what it’s like to have EDS, or who do not know what it’s like to have EDS like I do), usually mean “accept” as in – this is how it is, and if you are negative about it then you can’t live a good life.

What crap. Of course you can. EDS for me means pain. 24/7 sometimes so bad you want to die, pain. It means a life spent largely on my recliner, whether I want to be here or not. It means a lot of stuff which has no positive side whatsoever.

It is ok for me to hate those parts. It is ok for me to be pissed off that I have to put up with those parts. It is ok for me to curse the fact that those parts exist. I am allowed to be tired and frustrated and over it all.

Those parts are not all of who I am. If you see those parts, then you are only seeing a tiny fraction of who I am. I am strong, and funny, and cute and kind and I love life in ways you can’t even begin to imagine unless you know me well. I am a warrior woman, and I will defy odds that will blow your mind. I am complex beyond belief, and I make no apologies for it.

I don’t like being disabled. That does not mean I do not like me, or that I do not like life or that I suck in any way. If that is all you see of me, then it is YOU who is being lazy and not looking hard enough.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

Posted in Personal

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Pissed off since 1995. Mad as a hatter since way before that.

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