I’ve been trying to write a post. Been trying to write a hundred posts, but it’s all a tangle, whenever I try pulling one of the threads the whole ball knots up. Don’t know where to begin, because where can you start when the disease began before you entered the world, because what can you say when you’ve spent so long convincing yourself you have nothing to say? That tangle of where to start, seems like it’s the sort of thing that only ever goes away after you’ve already been talking. I never knew where to start with my psychic pain, back when I joined Bodies Under Siege, I only learned the words for everything I felt after talking so long with other survivors. But back then I had the luxury of anonymity. Had the freedom to explore the boundaries of myself in that anonymized community without worry for repercussions.
Having spent so long convincing myself I’ve nothing to say, it’s like I can’t speak my current mind without first unleashing that backlogged torrent. But I think, really, it’s all ableism. It’s this,… this,… we spend so much time denying the voices of the disabled, I feel like I’m not allowed to speak, feel like before I can claim that mantle I must first earn my street cred. Like, before I can write my post on living with chronic pain, first I must quantify for you what that pain is like lest you don’t believe I have it. Like, before I can write my post on invisibility, I can’t tell you how I’ve been trained to invisibilize myself without also first convincing you there’s something to be hidden beneath that cloak. Like, before I can write my post on internalized ableism, I have to have already told you my whole story —a story over a third of a century in the making, but also a story tangled up in so many other things that aren’t disability but which intersect with my disability. But I can’t tell you that story, not the way I see it, without telling it through the lens of the ableism of which I wished to speak.
But all this inability to speak before having spoken, I know it’s just ableism. Know it’s a tool of the able-bodied system, a tool they beat into us when we’re young, to make sure those who don’t fit the mould stay silent. It’s why I don’t comment or complain about a daily level of pain that’s high enough that OTC painkillers no longer help. It’s why when I do bring up out of the ordinary pain, I’m never believed; doctors are all, “it can’t be that bad if you’re only just mentioning it. Try some advil.” Just exactly like the police to a survivor of rape, “it can’t be all that bad if you’re only just mentioning it. Try not wearing slutty clothes.” And it’s not even the pain that worries me. It’s the feeling of inadequacy. Ableism is the belief that everyone already meets some standard specification of ability and productivity, that anyone who doesn’t measure up is just lazy, is cheating the system, isn’t shouldering their allocated duties, is a burden on the good responsible people, that those who truly “through no fault of their own” can’t reach those specifications are so rare that if you were one you’d already know and you’d never question so why don’t you just suck it up already. It’s the Protestant work ethic that says no matter how hard you work it’s never good enough. It’s why we feel like frauds, why we work so hard it breaks us, for fear of falling behind, for fear of losing everything because of a bad day. It’s that other impostor syndrome, the one that no matter how bad things get you can’t ever shake the worry that it’s all “in your head”, that you’re “making it up for sympathy”, that “it’s really not that bad”.
And all of this is why I can’t even begin to speak. For my experiences of ableism are all filtered through being a survivor of rape, being a survivor of a conservative Christian childhood, being a survivor of psychological torture and gaslighting, being a woman, being queer, and I can’t but draw the obvious and necessary parallels, but those parallels only elucidate if you too have survived these things.