I just had a conversation with a friend. I am completely in awe of the fact that I’ve had a conversation at all. It has been exceedingly difficult to carry on conversations with people lately.
I think people have some illusion in their heads that I am just like a non-disabled person in my head except that I type rather than talk. Certainly that’s an area in which I can pass to some extent at some points in time, because I usually type in the sorts of sentences that most people consider normal.
Guess what? The inside of my head is weird too. I may use the same language you do when I type, but I take a different route to get there. I identify strongly with people — whether they type, speak, both, or neither — whose internal routes look like mine. I don’t identify as much with people who might move vaguely like me and type to communicate but whose brains work in far more typical ways than mine does when it comes to the process of language and communication. This is a major flaw in the way people divide us up into speaking and non-speaking as if that’s the major difference between us (and for that matter as if those categories are fixed, well-defined, and static, I used to be a nominally “speaking person” for instance).
Also guess what? Treating a person equally is not the same as treating them identically. If you have to pretend my brain works just like yours in order to see me as a person, you have a problem. And you are creating a problem for me: people who do this will almost invariably be incapable of seeing the extreme inequality they are perpetuating between us. Making wheelchair users climb stairs is not “equality,” and neither is pretending my brain works like yours if it doesn’t. To do this sort of thing to someone is not a compliment, it’s a form of erasure, you’re ignoring who they are and you’re putting barriers in their path that don’t have to be there.
If you read aloud what I am saying as I am typing, I can’t communicate.
If you finish my sentences for me, I can’t communicate.
If you talk over me, I can’t communicate.
If you rush me, I can’t communicate.
If you interrupt every time I pause to come up with words, I can’t communicate.
And sometimes if you get really close and try to stare at the words I’m typing, I can’t communicate (that’s usually on a speech-output device, and it’s situation-dependent whether that’s a problem or not).
This is not about me being a control-freak who wants to dominate conversations. This is not about me stepping on your hierarchical toes wherever they might be. This is not about some sort of social hierarchy I’m trying to climb. This is about basic access to communication, and people like me are already working really hard, usually on a full-time basis, to communicate with people whose brains work in ways totally different than ours, we just want some reciprocity here.
If you are a non-disabled speaking person, then I can’t shut my ears and ignore you the same way you can shut your eyes or turn away and ignore what’s on the screen of my keyboard. I can’t turn the volume up high enough to shout over you if you decide to shout at me. This is an actual imbalance in power when it comes to communication situations and if you routinely abuse it I will rapidly lose respect for you.
And it takes me effort to come up with words. You might not see the effort. You might look at how fast I type and the sorts of words I use and claim that there is no effort. This does not erase it, and it does not erase what happens when you decide to throw wrenches into my ability to talk to you right and left on the assumption that I’m really not cognitively disabled and I can handle it. The ability to spew words on memorized topics also does not mean anything about other topics (or about the constancy of this ability).
My friend was talking about how when other people besides her talk to me, they usually seem impatient, like they can’t wait the extra few seconds or minutes it takes for me to get words out. She said they don’t seem to understand that there’s no rushing this stuff. I’ve seen people do the same thing to her. She has the same trouble with language I do (stemming, as she pointed out, from the same fairly important way of processing the world we share, so not something we see as a bad thing in and of itself) but she talks and people never give her time to come up with words. People act like she’s done, or should be done, the moment she pauses, just like they do with me. (And they don’t always notice my pauses because it’s all done in typing.)
At any rate, it was great to have a conversation with someone, but boy has it been hard to get anyone else to slow down long enough to have a real conversation these days. I have a number of medical problems going on, and I was not even able to coherently explain them to a doctor on the phone.
There are a number of things that need to be done, and when staff are here it’s hard to talk to them because they’re not as familiar as my friend and they are busy a lot of the time and it’s hard to get the time for a conversation even if they’re the ones who are better than average at talking to me. Lots of stuff isn’t getting done. Lots of communication is not happening. Which is scary because I depend on these people to do things for me and I can’t tell them what needs doing, and there’s nobody else around to do it but me.
Then there’s the fact that most people — in general — seem to have far less accurate receptive language than they think they do, so even if I communicate something in perfect and precise language, it gets garbled by the time it gets to whoever needs to know it. And that has been happening a lot too.
And the fact that often if I tell someone something, that may be the only time for months I can say it (even if it’s urgent), and need to rely on them to write it down or otherwise find a way to remember it because I might not be able to say it again for ages.
These communication problems don’t stop because a person acquires speech, typing, or both. Being able to form sentences on particular topics doesn’t mean what a lot of people think it means. My friend had to spend over half an hour with me today trying to work out what my body was doing wrong. Most people, including most medical professionals, aren’t willing to take that kind of time, but as she pointed out you can’t rush this kind of cognition. There’s a few things I do rapidly, but a lot of things I have a Barliman Butterbur orientation towards, I do it slowly but I can “see through a brick wall in time”.
And time is what most people seem totally unwilling to give me. It often seems in life in general (not just communication situations) like everyone is going around too fast to keep up with, and then getting mad that people like me can’t keep up, treating us like we’re just slowing them down on purpose to fulfill some weird internal need or something, or like we don’t belong there at all mucking up their perfect frenetically-paced world. If you push me for speed, you’ll get shutdown at best and a meltdown at worst, and either way the more pressure you put on for speed the slower I’ll do something. This is not defiance or passive aggression. It’s an inability to work under certain kinds of pressure. It’s a clogging of that little tiny hole at the front of my mind that I have to push vast amounts of information in and out through. There is no speeding up the rate at which I think and respond to things.
And if people would just take a tiny bit more time, these things would be much less of an issue.