But that's how disability seems to most people, especially my fellow abled folks. It's a struggle for any writer who cares. It's a existential struggle, though, for people with disabilities.
I have some further thoughts on writing about disability, specifically about being an abled writer about disability. Sparked by this post from Criptiques, which is very nice to me, but which also raises the hard questions of how to make disability stories matter.
“I am regularly faced with the dilemma of how to make stories about disabilities resonate outside the disability community” journalist David Perry, aka@Lollardfish tweeted yesterday. Perry is one of the few nondisabled freelancers I know of who regularly reports on disability issues in major media outlets and I greatly respect his work even if I disagree with him occasionally. (He also tweeted that in terms of the negative reactions nondisabled people have toward disabled people, pity was preferable to indifference, which I’m not so sure about.) That aside, I’m a big fan of his and am happy to see a savvy nondisabled writer “get” or even care about disability culture and politics without expecting a pat on the back for it.I am overwhelmed by this, so much so that I am almost too embarrassed to share it. But this writing beat, especially the ones that involve abuse and murder, it's a hard beat. I'm going to take this praise and say thank you, in public. Part of self-care is accepting praise as fuel to keep working. This ... this makes me want to work harder.
It’s so rare. Like, a blizzard in July rare, or a disabled character in a movie played by an actual disabled person rare.
More importantly, I want to use this moment to re-iterate my rules for allies. I write about them a lot, I think they apply broadly when writing about inequality when one is privileged, but they certainly apply to my disability writing.
2. Remember it's not about you (it's about people with disabilities)
3. Remember it's sometimes about you (abled people need to be engaged. See "not a niche" above).
4. It's mostly not about you, though.
5. Don't expect gratitude for doing the right thing.
There are other rules - don't tone police, accept anger even when directed at you, and most of all, accept criticism graciously and try to learn from it (that's part of #5). They all cycle back to #1) listen. I am going to screw up. I expect you to call me on it. I hope you'll call me on it. And then I'll try to do better.
This especially matters in the disability world because while I am abled, which is a problem, I am part of the disability community as that most problematic of creatures - a parent.
Parents are a problem. I am a problem. Parents do a couple of things. One, as Ari Ne'eman tweeted we feel free to share our children's worst moments in public, even with national media. Two, we speak for our children, especially non-verbal ones, assuming our wishes are their wishes. We reinforce disability hierarchies. I try to be hyper-vigilant on this in my own conduct.
These are just proto-thoughts about writing, thinking about how to form arguments and tell stories that include, build empathy, build understanding, effect change. Overall, though, I don't have an answer to Criptiques' "non-disabled dilemma." It's such a core challenge. If we can erode that wall and make disability stories matter more broadly, I think a lot of other changes could follow.
What worries me, of course, is that's not the trend. The trend is the other direction, towards eliminationist rhetoric and exclusion. Ignoring ableism. Casual dismissal of people with disabilities as real humans. The easy acceptance of a false "normal." We've got a lot of work to do.