1:47am November 27, 2014

When your entire communication system is threatened over what can be a really small mistake or a really big one, but still a mistake.

Have you ever told a lie?

Have you ever gotten fantasy and reality confused?

Have you ever deliberately sought to find out what a person was thinking, and then said it, so you could seem with-it, or sound smarter, or feel more connected to that person?

Have you ever played out fantasy as if it was reality, even if you knew the difference?

Have you ever, when writing, accidentally used someone else’s words when you meant to use your own, thought you were using our own, were sure you were using your own?

Have you ever changed your communication style based on who you were talking to?

Have you ever been unable to communicate around some people, totally able around others, and somewhere in between around others? Where “in between” can sometimes mean forcing words out, words that aren’t quite right, or using rage as fuel to get the words out, tainting your communication with anger?

Have you ever told people what you thought they wanted to hear? Told different people different answers to the same question based on what you thought they wanted to hear? Told people things you never actually believed, based on what you thought they wanted to hear?

Have you ever just been plain wrong about something?

Have you ever said something you wished was true, but wasn’t?

Have you ever said really strange things that seem totally out of touch with reality?

Have you ever made bizarre or grandiose claims about yourself because you wish they were true, or because people around you told you they were true?

Have you ever had other people convince you to say things that you didn’t want to say and didn’t beleive?

Have you ever said someone did something they didn’t do, just to get them in trouble? Without necessarily understanding the magnitude of the trouble you’ve caused, until it’s too late?

Have you ever had enough trouble communicating at the same pace as someone else, that your answers lag behind for seconds, minutes, hours, days, even months or years or decades? So that it sounds like you’re responding nonsensically, when really you’re responding on a different time-frame than others?

If you can speak, chances are that these actions had consequences, and that you didn’t like all the consequences.

If you can’’t speak, or can only speak with great difficulty, and have recently been granted a communication system that works for you, you may be in for a shock: Your communication system may be taken away the moment you do any of these things. You will constantly be judged to see if what you are saying is “really you”, and this will be true even if you don’t use facilitated communication.

Helen Keller got into a huge controversy when she wrote a story that she thought was from her own imagination, but it turned out to be from someone else’s work, that she must have been exposed to very young and then completely forgotten about except subconsciously. I’ve had such things happen to me, but they never sparked international controversy about whether i was really writing my own words or not. Which is exactly what happened to her. it happened to her so terribly that she began to doubt her own communication, her own thoughts, she thought maybe they were all from someone else.

FC and RPM users face a dilemma because they often need very close contact with people in order to communicate. Tito Mukhopadhyay handwrites totally independently, but his authenticity has been called into question because his mother must be standing there drawing his wandering attention back to the act of writing. She doesn’t direct what he writes, she just directs him so that he can write. That’s RPM, which is new on the scene.

FC has been around for ages, and there really is the danger of facilitator influence. But it is still not fair to an FC user to make their communication contingent upon what they communicate about.

Lucy Blackman, an autistic woman who went from using FC to typing independently, heard as a child that a school got closed down because children there reported sexual abuse. So Lucy, wanting to get out of school, tried to tell her mother that she had been molested at school. Fortunately her mother was shrewd enough, and knew her daughter well enough, to see through this and asked a set of follow-up questions that Lucy couldn’t answer, and Lucy eventually admitted the real reason she’d said it. Unexpected reports of sexual abuse were one of the things that made FC so controversial. Of course, many of those reports turned out to be true. But many were not true, and families were torn apart by it. If more people approached these claims the way people did around Lucy – the claims of a child trying to manipulate her environment without understanding the long-range consequences of doing so – there would probably be no controversy.

Facilitator influence is only one of many possible causes for false allegations. And worse, deliberate facilitator influence happens in some of these cases. The same as a situation I once saw where an illiterate DD man had a staff person who wrote his emails for him, and she began writing false accusations against other staff into the emails, because she and a certain case manager wanted to separate him from his favorite staff. it worked unfortunately… and I saw his true feelings towards a staff person we both shared, who had been fired because of false accusations. We were out shopping one day, and he was out shopping with his new staff. He looked horrible, they really had been abusing him and nobody was batting an eyelash. Abusing their power over him anyway – treating him like a living doll, who they dressed up in punk clothes and gave him a mohawk “for fun” without consulting him.

Anyway, he got one glimpse of our mutual staff person. He was someone who had tremendous difficulty walking and normally used a wheelchair. He’d spent most of his life until recently being horribly neglected in a group home. Our mutual staff person had been teaching him to walk, and teaching him to say no to people, and to stick up for himself, and those were the real reasons she was fired. Anyway, he saw her. He jumped out of his wheelchair, ran, not walked, over to her (it was a weird-looking run but it was definitely a run, not a walk), hugged her, and begged her to know where she had been, why she had left him, and when she was coming back. In conversation it came out that the case manager who orchestrated this whole mess had told him that our staff person had quit because she didn’t like him anymore.

And that all happened without FC involved at all.

When FC is involved in such a situation, the entirety of FC is called into question, the entire validity of everything a person has ever said is called into question, and a person may lose their entire communication system in one fell swoop. (This also makes it really easy for a facilitator good at influencing people, to deliberately have people’s communication systems taken away by giving them more physical support than they needed, making influence easier, and then influencing htem to say things that are likely to get their communication system taken away. This can be done out of spite and a desire to hurt the person, but it can also be done in order to make it easier to abuse the person without anyone believing it, or without the person having any means of communicating about the abuse.)

This is why the issue of FC and allegations of sexual abuse is so complicated. Because FC is a complicated process, with many possible pitfalls. One of the worst parts of it all, to me, is that someties people who use FC need facilitator influence in order to communicate. Their words are not entirely their own but their sentiments are exactly their own. This happens when FC is a process of two people working together, whose communication is collaborative rather than the work of one person. It’s sort of like having a co-author, only on all of your words, not just the ones that will be written down into book form. And there are times when it needs to be acknowledged clearly that this is what is happening, that FC for this person involves co-authorship, not single-person authorship in either direction, and that this is fine with both parties involved. This is a kind of FC that I could benefit from, I could benefit from it massively, even though I rarely need any form of assisted typing in the physical sense.

I know it’s out there happening because I’ve talked to people who do it. People who are very scared to admit it to nondisabled people, but who will admit it to someone else with a communication impairment because they know we’ll understand. I’ve also detected it happening myself, just from watching the flow of movement between the two people’s bodies and minds as they typed, the swirl of color that emanated from both of the and came to mix in the middle, forming a rainbow of new colors. I could feel the movements as if they were movements in my body, and it was like two people dancing, but neither leading the dance, both dancing where the words and ideas took them to. Am I big on synesthetic analogies? You bet, I’m a synethete many times over.

There are also stereotypes that come into play. Some people believe that autistic people or developmentally disabled people are too ‘innocent’ to lie or manipulate. So if such a person communicates a lie (of any kind, not just abuse), or says something solely to manipulate others, then people willl call their communication into question rapidly.

One of the worst things about this is that many of the above things I described at the top of this post? They’re things people learn not to do only by long experience communicating. Often an FC user has spent years or even decades of their lives silent and unable to use words. Often autistic people, regardless of whether we can speak fluently and communicatively or not, whether we use FC or not, have been too socially isolated to learn these lessons. So if we do also use FC, RPM, any kind of assisted typing, or even just an aug comm device, our authorship of our own writing may be called into question. Whereas if a nondisabled person did the same thing in childhood, people around them would react in ways that would show them whether they really wanted to continue communicating in this manner; Too often, disabled people are thought of as aliens, people who would never do the normal human things that normal people do.

I’ve had my own authorship called into question, and my autism called into question, by the same people, over the same writing! First they said I was super low functioning and being exploited, but then when they found out (I made it no secret, it was all over my blog) that I used to speak, or that I had been to college, then suddenly it was a whole different ball game. Now I was just pretending to be autistic, because a real autistic person wouldn’t say the things I said. In both cases it was “A real autistic person wouldn’t say this,” but the first solution was to call my authorship into question, and the second solution was to call my integrity as a person into question. I can’t say which is worse.

And as I’ve described, so I won’t do so again, complete strangers have seen fit to “test” my authorship in public. One walked off laughing after rendering me too rage-filled to answer the question he put to me to “prove” my authorship. (And public Turing tests are only one of many ways people think they can sneakily try to detect whether I’m the one communicating or not.) He thought he’d just debunked a fraud being perpetrated on me where people pretended I could communicate by programming a computer with seemingly realistic responses.

(The irony is that would be a very good description of at least 80% of my communication from the ages of 5 to 19. But I was the one perpetrating the whole thing, “programming” my brain to give adequate responses, and I did it using spoken language, so very few people picked up on it other than a really good shrink and a really close friend. A friend I didn’t even quite realize I had at the time, the whole story is told in this poem, it’s long. But very few people caught onto the real fraud I was perpetrating – the fraud that I could communicate fluently and accurately. That’s the only way I’ve ever truly been a fraud, is pretending I had abilities I didn’t. I had to, to survive. There are those who wouldn’t pretend abilities they don’t have, and those who can’t, but there are those of us who find ourselves at least somewhat capable of it some of the time, and for us it can mean the difference between life and death.)

The consequences of taking people’s communication systems away from them are direr than dire. Some people have committed suicide after such an event. They’d lived years or even decades with no means to communicate, had hope handed to them in the form of a communication system that worked for them or was beginning to work for them, and then had it cruelly stolen away from them. That loss of hope devastates a person. To finally have what you’ve always dreamed of, or never dared to dream of, you open yourself up to be vulnerable to a lot of emotions. And if that thing is taken away, then all that vulnerability gets channeled into rage or depression or suicidal thoughts or all three. The person may start self-injuring or hitting people again after having stopped for years when they learned to communicate. And, at worst, they may commit suicide. And nobody will ever know how many such people have committed suicide. They’re already judged not capable enough to communicate in words – they’re also judged not capable enough to plan and execute their own death. So their death will be reported as “She wandered into traffic,” “He wandered in front of a train,” “Sie wandered into a pool, fascinated by the water, fell in, couldn’t swim, and drowned.” Sometimes those stories are exactly what it says on the tin. Other times they’re suicides. And when they occur right after they’ve been denied communication, you can’t assume that’s random chance.

Anyway…. I just want to impress upon people that people who speak fluently in a way people understand readily can get away with things, communication-wise, that nonverbal or functionally nonverbal or semi-verbal people, or pretty much all FC or RPM or AAC users, can’t. And even superficially fluent people can get treated like this at times depending on their disability. But when your communication hinges on access to a technology or a person or a technique or all three, you’re horribly, horribly vunerable. You’re not allowed to make the communication mistakes that everyone has to make in order to learn how to communicate effectively. You have to be prctically superhuman these days to learn to communicate while keeping your communication system intact long enough to learn the lessons that everyone else is allowed to learn.

TL;DR: People who communicate in standard ways can get away with lying, fantasizing, exaggerating, manipulating, and all kinds of other things without having their entire communication system threatened to be taken away. People with severe communication impairments can’t get away with these things even long enough to learn how not to do them (because everyone learns how not to do them by practice, pretty much, we’re not all just born knowing not to do these things). And that’s horrible, putting so much at stake for such little mistakes that everyone makes at some point in their lifetime if they communicate in words at all.