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8:35am February 22, 2012

➸ felis corvus: Someday...

feliscorvus:

…I would love to be able to just switch back and forth between voice and typing/text-to-speech as needed, without anyone making obnoxious comments (“…but you were talking fine five minutes ago!”) or dispensing unsolicited advice (“…but if you use that thing, you’re going to lose out on chances to…

I was just talking to another AAC user about things like this yesterday. 

Oddly enough among my actual friends and housemates (I started using a keyboard, as opposed to just written notes or nothing, just before my disastrous attempt at university), none of them said weird things like that. In fact I got a lot of comments along the lines of “I like you better when you type.”

It was when most of my speech had dwindled away (I’d been losing it for ages, not related to AAC use) that I really started getting obnoxious comments in earnest, and then mostly from family.  And it was one of those things where you could tell they’d been talking behind my back because their phrasing was way too similar. 

“You’re still going to practice singing, aren’t you?  Because it’s a muscle, you know.  And you don’t want to lose it.”

I kept wondering, lose it for what?  Because, while this movement disorder sometimes reverses itself, that’s incredibly rare. Even with the pattern I had, which was more like a back and forth wave that slowly moved downward, rather than a straight descending line, it was still moving, you know, downward. 

I found this particularly offensive right around when I started using typing full-time.  Because I still could sometimes form sentence fragments or short sentences. But they never anymore even came close to what I was actually thinking.  They were random and, I think influenced by my Tourette’s(*), highly emotively charged. But had nothing to do with what I was actually thinking.  And even besides tics, I was later told, after describing this to a neuroscience researcher, that emotive expressions are separate neurologically from regular communication. She said many people who lose speech due to neurological disorders still retain that kind of stuff. So who knows. 

But the reason I found it offensive was that, given how many times I told them that my remaining speech was not communicative, they seemed upset that I wasn’t “using” it. Mind you, even at my most fluent, the percentage of what I said that actually corresponded to my thoughts, was generally rather low. And by right around when I started typing it was all but nonexistent at all. So what people seemed to be saying to me was “I would rather you not actually communicate with me. I would rather listen to you say ‘Get the fuck out of here’ than tell me what you’re thinking.”

And it really pissed me off for a long time, that people outside the family were perfectly well able to see the fact that I was far more communicative now than I had ever been in my life (even with typing), but my family remained stubbornly committed to hearing me say stuff that I didn’t mean.  I mean, by that point in my life, friends had often, even when I’d sounded fluent, begged me to switch to typing when they could tell my speech wasn’t at all communicative. But my family had never learned to tell the difference. I mean, okay, most of my friends had serious speech disorders themselves, or experience with them, but still.  It was very alienating. 

And speaking of the perceptiveness of people with serious speech disorders – for some reason, even though I’ve heard you talk plenty of times, my brain refuses to consider you someone who talks.  It’s like even when you are getting across what you mean, the distance in your voice combined with something about the way your words come together reminds me more of a little person in your head frantically yanking on levers to operate your mouth and string phrases together, than it does a person that speech comes naturally to. Almost like you’re operating your voice like a machine, and with great enough difficulty that I can see other systems in your head shutting down to accommodate it.  Maybe that’s why I don’t see you as just “talking” even when you talk.  People who just talk don’t look like that. 

(Why is it that most people can’t see things like that and yet swear they’re more perceptive about people than we are, rather than differently perceptive? And then they’re amazed if I tell them something perfectly obvious about an autistic person in the room, or in a video.  Because how could a person with “no social perception” notice something they couldn’t?)

Anyway I really hate when people make comments like that.  I think most people have no clue that abilities they see as ordinary actually fluctuate. Like they may understand not being in a sufficient state to do differential equations, but they don’t understand suddenly being unable to speak or walk or something. Plus there’s this weird distrust they have of disabled people. They often think we are trying to get something for nothing – although who knows what that something is.  So they look for “inconsistencies” and then get on our cases if they find any.  Almost like they think their job is to keep us from getting away with something. I don’t understand it but I’ve seen a lot of comments on videos that run “hey that chair user wiggled her toes so what gives?” and the like so I think I’m right. It’s like they think if disabled people get away with something then everyone will want to do it. Why that’s a problem is beyond me. 

I also don’t understand why they were so concerned with my speech muscles when it’s not like I quit using them. I can still say “uh-huh” and stuff like that and make a wide variety of nonverbal noises and tics and stuff. In fact my intonation these days is better than when I could talk.  Because if I don’t have to consider the words I can imitate tones just fine. So it’s not like I quit vocalizing, I just can’t use speech in a conversation.  Totally different things. 

The weirdest comment I ever got about typing, though, was from a really scary person.  I didn’t realize how scary until later, mostly because I’ve been well-trained by bullies and sociopaths to lie down and let them walk all over me instead of get the hell away. This guy, who called himself a friend at the time, said something like this:

“I don’t like it when you type. Because when you type I get this feeling like I can’t make myself hurt you. And I don’t think that’s fair.”

I later was persuaded to avoid the guy after I repeated something else he told me around the same time period:  that he was obsessive about trying to imagine the perfect way to murder people without getting caught. And that really the only reason he didn’t try this out was the fear of getting caught. And yes, I actually didn’t consider this a major warning sign about how untrustworthy he was.  I had to be talked out of letting him spend time with me, despite the fact that I always sensed a rather predatory air coming off of him, and around some people in groups, this sense that he was one shark telling other sharks about me, “I own this one, back off”. And if that doesn’t tell you how naive and passive I can be, and explain what my “friends” were like and why it is that so many bullies and sociopaths have considered me the perfect target over the years, then nothing will.

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(*) A lot of my tics were things like “I love you” or “I hate you” or etc.  And of course the stereotypical cuss words.  And just random phrases like “not another one”. And weird vocalizations.