2:54am March 8, 2014

Just to be clear.

My life is not a disability melodrama. It is not a novel. It is not a movie.

Yes, I’m extremely excited that I’ve been diagnosed with adrenal insufficiency. But I’m also extremely wary of the way people assume that excitement works.

It’s not that I didn’t have hope and now I have hope. And it’s not that I didn’t believe in hope and am now being shown the value of hope. And it’s certainly not one of those ever-popular stories people (including many disabled people) love, where my life was horrible until a brilliant doctor made a discovery that cured me and pulled me back from my potential death.

Even though my doctor is brilliant, in my eyes. And he discovered this. And I could’ve died. And I’m getting treatment that is undoubtedly extending my life. And I’m excited as hell and grateful as hell for all of these things.

It’s not the components that make it not one of these stories. It’s the storyness of the whole thing. It’s the fact that it reads like an inspirational melodrama instead of my life. It’s the fact that I’m forced to interact with people, constantly, who think my life ought to be such a melodrama and try to force it into the mold of such a melodrama.

As a society we haven’t progressed beyond Victorian novels like What Katy Did in terms of how we view disability. Seriously. Read it. That’s how people think of us, today, still. Including many of us.

And melodramatic stories about my life, make me want to puke. I’d rather just live my life.

Like… I’m happy to be treated (not, thus far, cured) because I feel better and it makes me more likely to live longer and I like being alive.

But I have never, ever, subscribed to the weird melodramas where the only two acceptable states are cure and death.

And I have never, ever subscribed to the weird melodramas where ‘hope’ is about healing and cure and doctors and treatments, and the opposite of 'hope’ is being sick and ill and maybe even dying. And where the whole story is about how the disabled person learns to 'hope’ again.

(Insert double horribleness if the disabled person needs to 'learn the lesson’ that their acceptance of their disabilities is actually because they lack hope, and are settling for less, and need to be kicked into gear by all the nondisabled people and more enlightened disabled people around them, so that they will seek treatment and save their own lives.)

These weird melodramas make me gag.

Sometimes literally.

It’s a powerful reflex.

It’s not that I like being sick (although sometimes, with some conditions, I don’t mind as much as you think). It’s not that I don’t like being well (although there are conditions I wouldn’t want cured, and you wouldn’t always be able to imagine which ones they would be).

Those are individual facts, devoid of melodrama.

The melodrama is what makes it horrible. And the way the melodrama is forced down our throats until we choke on it, is what makes it horrible.

Oh also this isn’t some kind of statement about what is and isn’t okay to feel when you’re disabled. It’s a statement about what I feel like about people who insist that I have to feel like a Victorian novel or fifties-era movie say I ought to feel about being sick, and that in fact all sick and disabled people secretly feel this way, deep down, because our lives are, secretly, all melodramas.

Notes: