10:32pm September 14, 2014

We talk about facilitator influence of people typing, but we never talk about influence of people’s speech, no matter how robotic and unnatural that speech becomes.

Please see this post for why I am posting various stories about my experiences with assisted typing and other forms of assisted movement. Please don’t just randomly respond to this post without understanding why I’m posting it, and why I’m posting these stories separately instead of all together. (I don’t have the spoons to make one giant post.)

I used to have more speech than I do now. Some of it was usable, most of it wasn’t. Superficially, you couldn’t tell the difference between my communicative speech and my non-communicative speech. It was designed that way. That’s the whole way I learned to talk: Sound plausible, but don’t necessarily communicate. I wrote a poem about it called I Am Not A Word-Fish. The poem is bitter because I still sometimes get bitter about the assumptions people made when I could speak, even as I was trying to tell them I was drowning in words.

But the way that I learned to speak was by creating delayed echolalia from overheard conversations and books, and stringing it together, remembering which situations were meant to provoke which responses, and I became extremely good at this. So good that it took an unusually perceptive person to see through it. Or an autistic person, many of whom saw through it instantly because they were doing it themselves. So I had spoken language, fluent spoken language, but maybe 0-20% was communicative language, the rest was regurgitation.

And this made me very vulnerable. And this becomes important to facilitated communication debates because I have seen it so many times: A verbal autistic person who, like me, was easy to ‘program’ to say whatever people wanted them to say. Someone who could just echo whatever they were told to say, and become as close to a ‘the-world success story’ as they possibly could. And then a nonverbal autistic person, typing through facilitated communication, but giving clear signs that every word they type is their own. Including confirming verbally or with sign language that their facilitated communication was their own.

My friend was in a conference panel with two other autistic people. One of them was Larry Bissonnette, these days known mostly as the star of Wretches and Jabberers, but back then mostly known as a local ‘outsider artist’ and proud old-Vermonter eccentric. He communicated through facilitated communication and some speech, and she could tell the two went together, and that he was often confirming his typing with his speech when people got confused about what he meant. That’s been my experience of Larry too. The other was a young man whose name I don’t know and I wouldn’t name him if I did know, because what I’m saying is not complimentary.

This young man was verbal and was considered something of a success story. Weird how Larry is considered less of one, despite his outstanding success as an artist and filmmaker, but Larry doesn’t and will never and does not want to pass for normal, and passing for normal is what a success story is all about. Anyway this was one of those teens who’s been through ABA and everything and everyone talks about how high functioning and wonderful they are, and what a testament they are to the hard work of their parents to make them less autistic.

Problem was he functioned like a robot and he communicated like a robot. He couldn’t say things without asking his mother what to say. He couldn’t articulate his own thoughts. All of the things he said were controlled by his mother. It was very obvious. I know what my friend meant because I’ve met people like that, I’ve been somewhat like that. But when you’re like that, when you repeat what they want to hear, they never question the validity of your communication.

Larry’s communication is clearly his own. Nobody but Larry could come up with the things Larry says. This other man’s communication was clearly not his own. He was not speaking his own thoughts, he was only speaking the thoughts of others. Larry was not influenced at all by his facilitator. The other man was heavily influenced by his mother and other people in his life.

Yet Larry is the one who is always under scrutiny. People say he isn’t communicating. I know Larry. I know he is communicating. The only reason he is under scrutiny is because he types with some degree of support to communicate. The other man is under no scrutiny at all, even though he ought to be under intense scrutiny because he is not being taught to communicate, he is being taught to parrot what other people want him to think.

And that’s what confuses me about the debate about cueing and facilitator influence. I know that those things happen during facilitated communication, and I know many of the things that make people vulnerable to them. I have talked about this.

But there are many people, myself included, whose speech is much easier to influence than our typing. If I could still speak, it would be a disaster, and in fact the only two times I’ve been able to speak since losing speech for good, pretty much were disasters. Speech, for me, is so much easier for an outsider to influence than typing is. People can influence both, but speech is by far the most vulnerable to influence. And I am far from alone in this situation. Many autistic people are like this.

So where is the outcry about the autistic people who have been forced to repeat the words of others, in our speech? Where is the outcry of the false things we say that do damage to ourselves and to other people, because we have been taught not to speak the truth of our experiences, but only to speak falsehoods, the falsehoods of others. The falsehoods that say we are who others think we are, and nothing more. We have been taught to lie about our innermost selves. We have had the ability to use speech for genuine communication wrested away from us, many of us permanently. Some autistic people stop talking on purpose because they know that their speech is so easy to influence that they’d better not do it around people. And then everyone wonders why the sudden “regression”.

So I have a big beef with the way that facilitated communication is portrayed as more vulnerable to facilitator influence than speech is. They are both vulnerable to influence, mind you. And in totally different ways. But for many individual autistic people if you want to find influenced communication, false communication, forced lying… look no further than the words pouring out of their mouths. We are not word-fish, we regurgitate words, no more. And nobody notices and nobody cares, they’re too busy trying to see how cueing works in FC. And besides, we’re telling them what they want to hear (unlike what often happens with FC), and we’re doing it in a mode they consider trustworthy (speech), so why would they bother fixing something they don’t even see as broken?

It fills me with rage, nausea, and a passion to change things, but I don’t even know where to begin. Just remember — influence doesn’t stop at typing.