I’d been diagnosed with my first chronic illness for a good ten years before I took the label on. This was partly because I didn’t make a connection between chronic illnesses and disability. That’s an experience I share with a lot of “invisibly” disabled people. Disability is all deafness and wheelchairs and that sort of thing, right? Not so much. I also didn’t take on the label for so long partly because I didn’t experience my condition as disabling for most of that time. A bit annoying, sure, but it wasn’t that bad until a patch about four years ago, and then it increased last year, and then my health got shot all to hell again this year. It’s only been in the past couple of years I’ve been able to approach myself as disabled.
So what changed? To gain access to some services, I had to fill in some forms marked “disability”. That was cool, I could handle being lumped in with disabled people, oh wait maybe that means this qualifies as a disability, oh no I’m one of them, stop being a bigot they’re disabled not monsters from the black lagoon – hey. Maybe I am disabled. Maybe that describes what I’m going through. Maybe this will allow me to explore opportunities and internal spaces I’ve been shutting off. And that’s okay.
Before I got there, I had to overcome a few things. As any “invisibly” disabled woman will know, there’s an idea of the “whiny woman” in your way. The “whiny woman” is that silly broad who always complains about her aches and pains, but who we all know is just looking for attention. The idea of this imaginary woman is put on to us, used to delegitimise our voices, our experiences, our pain. When I ask for disability-related help, I am keenly aware that whoever I am asking may well be thinking of me as a fluttering fusspot, not a person with needs. I did not want to be that whining woman, I did not want to make a fuss. And isn’t that just typical? Women are so often told, implicitly or explicitly, that we shouldn’t draw attention to ourselves but should go about things quietly, carry on, don’t demand anything for yourself. This is, of course, on top of the disability stigma: disabled people are subhuman, better off dead, unlovable, disgusting. Which hasn’t been the case for a single PWD I’ve met, or anyone, in fact. It’s nasty lies, it’s some people’s horrible perceptions.
I came through all that and accepted what I’d always known, always thought about other PWD but couldn’t yet apply to myself: those things aren’t true, we are all wonderful people deserving of life and love and whatever we want for ourselves. And when I finally took on the disability label, it was a relief. Here were a term and history I could apply to my experience. It was liberating.
I came to realise that nobody could force that identity on or away from me. No matter what anyone else thinks, whether they see me as disabled, whether they think I’ve been faking the whole time, this is my label to claim or discard as it suits me. If, one day, I find an identity of ‘disabled’ no longer suits me, no longer applies to my experience, I can let it go.
How do you relate to the label of ‘disabled’? Did you grab it with pride, wear it with shame, are you considering claiming it, do you reject it for yourself?