I’m going to explain about how A Wrinkle in Time gave me the title for this, but to get to that, I have to talk about imagination, about three things that got in my way when I tried to write this, and about inspiration. (I’m also going to yell at abled people a few times. If you’re abled, don’t worry, you’ll live through my yelling at you. If you’re disabled, feel free to make popcorn or your equivalent if doing so suits your needs.)
So, abled people. Hi! What can I tell you? What should I not tell you? What is forbidden? Can I tell you the things that might make you find me not such a sweet plucky cooperative good disabled person? Can I say that if there were a way to put some of you in a restriction box sometimes I’d do it? Confess that when you tell me how hard it is to have a disabled friend or lover I hate you, or hate that part of you at least, for a while?
I know one thing for sure. I won’t measure myself by you anymore.
I can’t measure my future by you, either. And I’m not leaving it in your keeping.
So let’s start with imagination.
Imagine me. I am disabled, so imagine me disabled. You can do it however you like. Choose your favorite template of disabled person. Then imagine me again, disabled differently. Then two or three more times. Blend multiple disabilities. Keep going. Does the space in your head where you keep templates of “disabled person” have as much room in it as the place you keep other templates?
I want disabled people in science fiction. Lots of us. All the templates and more. Infinite combinations. I want so many of us that we’re an unremarkable part of the situation. I want so many of us that nobody calls us “inspirational” anymore. I want us to be part of the general imagination.
Some days I am so weary of the way this genre is set up. This is a genre where a spaceship is glorious and a tiny hand-held computer is everyday technological magic, but a ramp is too fucking complicated to invent and install, and disabilities are too unimportant to think about with respect and empathy. (Let’s be honest, it’s the thinking about it with respect and empathy that seems to be most resented here.) Where the frack are the engineers who boldly go and boldly come back and boldly are fracking disabled right out here in public?
Make no mistake about this: disabled people are engineers. We have to be engineers because there are so damned many obstacles erected by you people between us and most of shared community life.
As for spaceships, there’s a mental image I keep close to my heart. I want to see a bunch of kids living on a ship, being home-schooled (ship-schooled?), using adaptive technology to contact Perkins for information on Annie Sullivan to write their essays for their history lessons. I shared this with a friend who works at Perkins when we were talking about accessibility and tools, and she liked it very much. She had told me, “In the 1830s, someone who was blind had to rely on what other people chose to make available, either by reading aloud or by using awkwardly large, expensive, and limited materials in embossed type. These days optical character recognition, refreshable braille displays, magnification software, and text-to-speech tools mean people can live, work, learn, and enjoy the world, following their own interests.” She works with deaf-blind researchers. They’re following their own interests, and I’m pretty sure those interests do not include being inspirational for able people. (I really REALLY want to see the Perkins Institute in space. I want the ship-schooled offspring of space-farers doing reports about Helen Keller’s Socialist writings and relating that to their own lives and disabilities, and writing about what’s different and what’s not.)
I’ve been having trouble writing this essay for two reasons. One reason is the festival of difficulty that chronic illnesses have made of my last two months, ranging from the recurring numbness and pain in my hands/arms to the nausea and increased pain levels, along with bonus brain fog. All of these things make everything take more time and cost more effort. The other reason, possibly the bigger reason, is that all of that makes it more difficult right now for me to achieve the upbeat, optimistic tone which is everyday survival equipment for so many of us disabled people.
Nobody likes an ungrateful cripple. But I’ve got to say that it’s hard work being inspirational for you all the time.
(If you’re a disabled person of color, that’s squared or cubed; if you’re a disabled woman or non-binary or trans person of color, it gets into large exponents fast. I only know first-hand from being a currently-fat white perceived-as-female person… but I believe other people who tell me how it works for them.)
There’s a third reason, but we’ll get to it later.
So what do we disabled people want? We want to exist as part of the regular fabric of a usual day. We want to exist in your imagination and in the human-built gathering places of the physical world. This, of course, is often decried as asking for special privileges. Then also we have the people who ask why we’re making such a fuss if we just want to be treated like everyone else.
Shades of Camazotz. “Like” and “equal” are not the same thing at all. Treating us “like everyone else” isn’t going to bring about equal access. Figuring out what each person needs for full access, and then trying to get as close to that as we can manage: that’s what we’re aiming for.
Not everybody needs movie trailers to be captioned, but some of us do. Not everybody needs ramps, but some of us do. The funny thing is that the benefits of accessibility are not always limited to the people you expect to use something. When WisCon equipped their Guest of Honor speeches with CART (Computer Assisted Realtime Transcription), those of us who are hard of hearing or deaf were glad. So were the people with other auditory processing disorders. So were people for whom English is a second language. The accessibility added for one group benefitted at least two other groups unexpectedly. This is not unusual. It happens all the time. It’s so good when it does, too. It adds so many possibilities for connections.
Disabled people enrich the world for everybody. Designing for us (with us! by us!) improves things in unexpected ways. (Monocultures fail more easily. It would be a good idea to remember that.) Disabled people are good for a lot more than just our inspiration value, though you’d hardly know it from some people’s approaches to us.
Oh, and besides existing in your imagination, we want to exist in our own imaginations.
There’s some work to do on that, too.
So we’re up to talking about inspiration. Right.
Inspiration is tricky. I do find certain people inspiring, but not in expected ways. Here are a few examples:
Somebody who used to be a friend would get on my case whenever I complained about how something related to disability was hard. “Other people have that too,” she would say, whether it was mishearing something, confusion, exhaustion. “You’re not special.” And she’d tell me to stop setting myself apart from other people. These days when anybody starts doing that, I ask them how they handle it when they’re left in the building during a fire alarm because they didn’t hear it, or how they deal with cafes where the waitstaff mock the stupid person who never came to the counter get their order when their name was called and just let it sit there getting cold.
Once, when I needed to be at Mayo for some follow-ups after a hospitalization, a friend offered to drive me there and get me from place to place. Their offer was much appreciated, because I was having some pretty bad bouts of depression around everything else, and getting me there was a great boon, even bigger than usual.
The friend is a good person but they have a habit of making offhand remarks that if they ever lose mental capacity, their life would not be worth living and they would kill themselves. (Can I tell you how tired I am of telling myself “so-and-so is a good person but…?”)
I have lost certain capacity in some areas. I had a stroke. Mostly I came back just fine, but there are a few things that changed: I cry more easily, I forget names more easily, there are certain words I lose. And some of my other chronic illnesses affect how quickly and easily I can do math in my head, et cetera.
The point is, I used to have greater capacities, I have lost some of that, I know it, and I know that the losing is probably not over, what with one thing and another. So I wanted to ask her not to make her usual comments, seeing as how dealing with hospital follow-up plus depression plus reasons for hospital follow-up plus other stress would put me in a place particularly vulnerable to “If I were diminished, I’d kill myself.” So I asked that she not say anything like that, please, while she was with me.
This resulted in an hour of her declaiming why she was absolutely right to say that she would kill herself if she lost certain mental capabilities. Which is very hard to keep from hearing as “If I had your troubles, if I had your life, it would not be worth living, and I would kill myself and that would be the right thing to do.” She never did get that into her head. She never did understand why what she was doing was a problem. I learned to stop talking about it with her, and just try to change the subject as fast as I could.
I have been told how difficult and annoying it is to have a disabled friend, a disabled lover, and then expected to sympathize with and soothe the friend or lover telling me this. I have apparently been expected to say that I’m sorry.
Sorry. Sorry for slowing you down. Sorry for taking so long. Sorry for eating so slow. Sorry for the damned eating disorder in my past, and the way it sometimes makes me weird and difficult in grocery stores. Sorry for the way I panic sometimes, and get very short or opaque or just difficult.
Sorry for not being able to hear things. Sorry for making you repeat. Sorry for making you irritable. Sorry for making you give up because I am so frustrating, because being with me is so frustrating. Sorry for not being able to hear the damned voiceover on your special precious completely uncaptioned movie that means so much to you. Sorry that I am a failure as a lover for not being able to hear this important thing, because after all, if I really cared, this wouldn’t be a problem.
Sorry for crying when you got mad at me for not being able to hear the movie.
Sorry sorry sorry. I am no fun for you. I realize that.
Thank you for being so inspirational.
I promised I’d tell you about the title of this essay, and about the third reason I was having trouble. The title comes from a movie trailer, but you won’t find it there if you can hear the dialogue.
A trailer for a movie I’m excited about was making the rounds online, but the trailer had no captions. I grumbled about this, and a friend found me a link to the trailer on YouTube which she brought to me in hopes the captions there would work for me.
YouTube uses auto-captioning software, and the degree of messed-up-ness they can achieve is truly rage-and-hilarity-inducing, depending on how badly you need to actually understand the video at the given moment. Without captions, I understand about ten percent of videos at most, unless there are unusually favorable circumstances. Watching auto-captioning is an exercise in figuring out what they might have meant, and adding that to whatever lip-reading cues are available, combined with pushing the sound as loud as I can go without signal degradation. (Yeah, I call it lip-reading. I know some call it speech-reading, but when I use that phrase with the abled people I’m trying to get access through, they have no clue what I’m talking about—and confusing them can make them irritable. So lip-reading it is.)
The auto-captioning failed to accurately caption at least three sections of the trailer (which was a pretty short trailer, so that’s a significant quantity of failure). One important piece of dialogue was, “The only thing faster than light… is darkness.” The auto-captioning software rendered this as “The only thing faster tonight: Mr. Darkness.”
Yeah. Welcome to my movie-going (and television-watching and show-streaming) experience. (“Be a warrior” got captioned as “do aria,” which was also pretty ridiculous. Filking may ensue.)
Not being able to hear the movie trailer brings up the third reason I was having trouble writing this. I was disqualifying myself. Chronic illness and disability. Am I disabled? Am I ill? If I’m ill, am I disabled? Am I broken?
Recently I was talking with my doctor today about disabilities. Specifically about multiple ones. I had gone in to get my ankle checked out, because it didn’t seem to be healing, and that was making it harder for me to walk, which is making all sorts of other health stuff hard to manage. We got onto a tangent about hyperhidrosis and I was saying that hyperhidrosis is not even in the top ten for painful or scary things I have, but it’s the one that causes the most social anxiety for me. (Navigating social spaces with a cane and an unusual gait makes me conspicuous, which I can handle. Having a physical condition that drenches me with sweat at unpredictable intervals, leaving me sitting in a puddle of moisture that looks a lot like pants-wetting to bystanders when I get up, is a lot harder for me to endure.) She remarked that a lot of times the medical/health/chronic illness/disability issues that bother people the most are not the ones she would expect them to name.
Do I count? Am I disabled enough to count?
According to Mr. Darkness, I’m disabled enough to count. If I don’t have access to the trailer everybody else on Twitter is talking about? I count.
So. Back to the other, more commonly cited sort of inspiration, by which I mean when we disabled people are told we are inspirational. “The identity of a disabled person = tragic,” says Eman Khan @punnysamosa on Twitter. “Simply existing is ‘overcoming tragedy.’” Khan points out that therefore simply surviving is seen as inspirational—because we’re not supposed to.
We do survive. We do exist. We’ve been here forever. We will use any means available to keep existing. We will keep on until you finally get over calling us “special” to keep us at arms-length. Deal with your attitudes. Deal with us. Deal with the ways you erase us from your description of daily life, now or in the future.
Deal with your lack of imagination.
Khan shared an exchange which goes:
“Wow you’re so inspirational!”
“For what…? All I did was go to the store… like you…”
All we are doing is going to the store. And to school. And to the lab where we work. And to space. And to every corner of the future—and to every corner of our stories about the future, too. Our stories, your stories, and everybody’s stories.
There’s work to be done. Let’s do it.
© 2018 by Elise Matthesen