2:03am April 28, 2014

Dear abled writers #10

mattwritesthings:

Don’t cure disabilities in your stories.

We don’t exist to be fixed, we are not broken.

Not only won’t most of us live long enough to have the option of taking the magical cure-all pill, but it also creates and reinforces the narrative of disability being something that necessitates fixing. It doesn’t.

That line of thinking leads to eugenics land.

I wish they’d ever write about treatment that isn’t a cure.

Or trade offs. Or side effects.

Like, how awesome would it be if any of those YA novels about mental illness ever had someone Deciding To Get Help, going on a medication, and finding out that that medication *sucks* for them?

And don’t do the thing where the only alternative to a cure is death, because those are the only two fates open to a disabled character.

I’m struggling in my life right now because I’ve stumbled on a treatment that has alleviated huge amounts of chronic illness and impairment that I’ve had in a severe form for years. And that’s wonderful, it’s great, I love it, and I can’t be happier. But I struggle in dealing with people who’ve read the miracle cure books and want to impose those stories onto my life.

The fact is I’ll be on this medication for the rest of my life if I don’t want to die. There are no other options if you don’t produce cortisol. So it’s not a cure, it’s a treatment. Steroids have a huge range of dangerous side-effects affecting every system of the body. I haven’t experienced any bad ones yet, but I could at any time. And being ‘cured’ (if that was even an acceptable way to see this) of one condition doesn’t mean I’m cured of any of my other conditions. I still have a feeding tube and chronic severe pain and all kinds of other things going on. Things are just different.

Because… most disabled people have more than one disability. People with one disability or one illness are the exception, not the norm. But the reverse is true in books. We always have one illness or disability, and it always follows specific rules for how such illnesses act.

Oh and I’m one of those people who unabashedly loves “The Fault In Our Stars” for getting so much about living a difficult and beautiful and difficult life with chronic, life-threatening illness right and not curing anyone. I can’t find it in myself to care too much about the parts of it that aren’t so great, it was such a refreshing read.

But seriously as someone who’s going through as close as can be said to be a 'miracle cure’ of one of my conditions (secondary adrenal insufficiency) right now? Books don’t get it right at all. I’m experiencing all kinds of amazing things but I’m still disabled, I still have to stay on this treatment, I’m still in significant danger any time I experience stress or physical illness or injury, I have to have frigging injectable meds sitting around because it’s that important that I get them even if I have a stomach flu, and I still have all my other medical conditions going on that are not cured.

Also? My life is not one where hope is cure and despair is continuing to stay disabled. Getting treatment has not given me hope. It’s given me the ability to stay alive (I probably would not have lived much longer without it) and it’s given me a lot of things, but this isn’t some kind of melodramatic bullshit story about needing to find hope in the world.

Rant over.

Notes: