9:19pm September 11, 2014

When you write a post aimed at a specific group of people…

…and as far as you can tell, none of such people are responding to your post.  Meanwhile you’ve managed to hurt a bunch of totally innocent people who can't do the things you’ve asked people in the post to do, because their brains don’t work that way, who were never a part of the target audience to begin with, but you couldn’t figure out how to say that without making the post really long.

I really feel like shit now.  Because there are things I need to say, because they’re important, and they’re in response to real things that happen every day on tumblr and in the real world.  But the people most likely to read and take it to heart are the people who don’t need to read it because they’ve already taken it to heart, and they feel bad because they physically can’t do the things in the post because of disability.  Meanwhile the people who do need to take it to heart because it’s not just a disability thing, are nowhere to be seen.  Hopefully they’re in the background somewhere, quietly soaking up some of this stuff, I can hope.

Because otherwise I’ve just made a bunch of disabled people feel like shit for being disabled, and haven’t reached any of the people who really needed to hear what I had to say.  Which sucks, because I’ve been on the other end before.

I don’t know if it helps, but if I seem to be asking the impossible of you, I’m probably not aiming my remarks at you.  Because I don’t like asking the impossible of people, and I know there are people who flat-out can’t do the things I request people to do in some of these posts.  I’m not asking people with NLD to read between the lines and catch all the body language.  I’m not asking people who require jargon as part of their vocabulary to drop even one word of their vocabulary or be considered a snob by me.  (There are jargony snobs, and I was aiming it at them, but I was not aiming it at people whose vocabularies have to include jargon or they don’t function.)  Unfortunately I can’t control what other people think of people who use jargon, and I know many people in my building will automatically assume “snob who thinks they’re better than me” if they hear too many of the wrong words, because a lot of the time that’s what is going on and they’ve been burned one too many times.

I still think the posts I’ve made are important.  But I feel demoralized that I’ve been convincing people there’s something wrong with them if their disability won’t let them be a certain way or understand a certain thing or use language a certain way, because that’s… way not the intent.

It reminds me of like… one time I tried to write about how some parts of the chronic illness community and abuse survivor communities – some parts, and some parts only – encourage people to get mired in self-pity at best and to worship it at worst.  Which is something I knew from experience having been through it.  And the people who most needed to hear it blew it off or grossly misrepresented what I was saying, and the people who weren’t doing anything wrong agonized about whether or not they were “whining” too much (they weren’t, most of them were clinically depressed, which is not self-pity).  

It’s always the people who least need to hear a message, who agonize about that message the most, and it makes me feel really horrible when it happens in response to something I’ve written.  Even when the thing I wrote, had to be written, it still makes me feel terrible to see people agonizing over not being able to do things that I never would have asked them to do.

But I also can’t write, when I have to write disclaimers on everything.  It gives me writer’s block and then no writing gets done.  Because there’s always one more “What if someone thinks I mean that, holy shit that would be bad!” and another disclaimer to write.

Anyway, I’m really, really sorry to everyone who can’t erase jargon from their vocabulary and thought I was asking them to, who can’t listen to anything but language and thought I was asking them to, who basically can’t function in the way my posts seemed to be asking them to function in. I would never tell anyone who needs certain words, to remove those words from their vocabulary, even heteronormativity.  I would never tell someone with nonverbal learning disabilities that if they tried hard enough they could hear the music of people’s speech and the dance of their bodies in nonverbal communication.  Those messages were for people who do things willfully, not for people who do them because of a disability.  They were for real snobs who think you can’t discuss oppression without jargon and a textbook-style discussion, not for people who get called snobs because they use big words (a category I fall into myself sometimes).  

I just… I feel awful for even slightly making it sound like that’s what I meant.  Years ago, I read an article in Mouth Magazine aimed at disability activists who were getting lazy about their activism because their lives were getting too cushy and they felt like they had more to lose.  My life was falling apart, I was daily suicidal, I could not get enough to eat, there was no way I could make it to San Francisco for an ADAPT action, and the article made me want to kill myself, I even developed a plan, because I was so bad at everything that I couldn’t even be a proper disability activist, in my eyes.

So… I know how bad it can get.  I know how it can spiral into despair at ever being able to do anything right, in a world that demands things you’ll never be able to do.

I never want to make those demands of someone who can’t do it.

If I seem to be making such demands, trust me, you’re not my target audience, 99 times out of 100.  

And I’m terribly sorry for bringing that down on anyone.

But I’m still going to be writing about the things I write about, because someone needs to write them, and the problems I write about are real, even if the problems I write about are in no way caused by people having disabilities.  And the ordinary people I’m writing about, who do have these communication styles – including myself – are not well represented on tumblr.  And I always want to increase representation and increase understanding.  But not at the expense of certain disabled people who aren’t the problem.

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