4:25pm September 14, 2014

Someone asked me about facilitated communication.

Someone asked me to give my opinion on facilitated communication. Then they immediately apologized and said I didn’t have to give any opinions at all. But the thing is, facilitated communication is a subject I’m highly interested in. And by interested, I mean not just a spectator’s academic interest, but as a person with a movement disorder that can become severe enough that I need assistance in order to move my body in general. The controversy over whether FC is ‘real’ or not affects me on a personal level.

When I started out, I intended to give you a really good overview of what facilitated communication is. Because most people, even most people who have opinions on the matter one way or the other, don’t understand what it is, and what it isn’t. They don’t even know what’s really going on with the hand-over-hand version of facilitated communication (which is the version most people are familiar with), like they literally don’t know what movements are and aren’t taking place in that instance.

I wish I could give you that information. I don’t have the spoons. I’ve been lacking spoons for a lot of things, when it comes to writing, the last few days. There may be a point in time when I’m capable of giving you that overview. But that time is not now.

For now, I can only give you the bullet points:

Facilitated communication is not a name for every kind of physical assistance given to someone who needs help typing. It is a name for a specific training technique where a person starts with a high amount of support at the hand, which is then faded back along the arm, to the shoulder and back, and then to the person just standing next to them or holding the keyboard, and then maybe not needing a facilitator at all. A person can, however, get stuck at any point along this process and require that degree of support indefinitely. The reasons given for needing the support generally revolve around some combination of motor issues, sensory issues, and severe anxiety.
There is a big controversy about FC that has to do with who is actually doing the typing. There are two main sides to the controversy, but a lot of smaller sides. I am not on either of the two main sides, but if you knew me, you’d have guessed that by now.
One of the two main sides says that FC is at best self-delusion and at worst a hoax. That all of the communication is coming from the facilitator, and the disabled person is like a walking ouija board. People on this side are often highly concerned about allegations of abuse that have destroyed families and caregivers, that may have come from the facilitator and not the disabled person at all. They are divided on whether the facilitator is actively feeding words to the disabled person, or whether it’s all unconscious.
The other side tends to say that all of the communication is coming from the disabled person. When there’s clear evidence that information is coming from the facilitator, explanations range from the mundane (the facilitator is using too much support and giving cues to the disabled person, and needs to fade back the support so this will stop happening) to the bizarre (all nonverbal people, especially if autistic, are telepathic). Note that there’s been at least one case where a disabled person admitted to seeking cues, at first to get better scores on tests at school, but later because she got so much attention for claiming to be telepathic. After she was confronted and admitted what she was doing, they scaled back the support she was getting and she continued to be able to type but was no longer able to get cues from the facilitator.
I will sometimes used the term ‘assisted typing’ for what I have experienced, because I’ve never done facilitated communication with a trained facilitator. My friends and staff and I have come up with our own ways to do things. Sometimes they seem to resemble FC exactly, sometimes they’re quite different, but they’re not the official training technique known as FC. Also my cat figured out how to do it. The nice thing about that is that nobody ever, ever has suggested that my words are coming from my cat, even when she’s got both paws on my hand.
I am atypical for someone using assisted communication. Here’s why: I don’t always need it. I don’t usually need it. I did not grow up without speech. I am normally an extremely fast ten-finger typist. The only times I need assisted typing are when a movement disorder called autistic catatonia disrupts my ability to type on my own. I also use similar assistance for all kinds of other movements besides typing.

Despite my being atypical in many ways, or perhaps even because of it, I think I have a unique perspective on how facilitated communication and assisted typing work and don’t work, and both the benefits and the pitfalls.

My belief is that some facilitated communication is absolutely genuine and that this is proven by the fact that there are people who have gone on to completely independent typing — typing without even someone standing near them, these are people I’ve met. There are also people who have gone on to speech. People who can verify, in speech, in sign language, or in independent typing, that anything they typed while using facilitated communication was genuine, show absolutely that there is such a thing as genuine FC.

My belief is also that some facilitated communication is fully or partially influenced by the facilitator. Sometimes this happens by accident. Sometimes the facilitator is doing it on purpose. Sometimes the disabled person is deliberately seeking cues from the facilitator, something nobody ever thinks of because they don’t see us as smart enough to do something like that, but it happens all the time.

And sometimes, there’s a serious problem, in that some forms of facilitated and assisted communication… they depend on a partnership between the facilitator and the disabled person. And that partnership involves cuing at some points as an active part of the communication process. Take the cuing away, and you take the genuine communication away too. Because what you’re getting in these instances is a collaboration between two people in order to communicate. And so you’re just going to end up with two people’s thoughts mixed up in there and there’s nothing you can do about that.

But I’ve told you very little, here, honestly. And this isn’t the stuff I want to be telling you. So what I’m going to do… I’m going to periodically make posts, mostly telling you my personal experiences with assisted typing and assisted movement in general. I’ll tag those posts with #FC so you can find them. My hope is that by telling you actual stories about how these things have worked, and not worked, for me, I can give you more insight into how FC works, and doesn’t work, in general. And then you can make up your own mind. This post is just to tell you how it’s going to work, it’s not my definitive post on the topic at all.

Also facilitated communication is not just another word for using a keyboard to communicate. It’s a specific way of accessing a keyboard, or a letterboard, or picture symbols, or anything else you can point at. So people can please stop saying I “use facilitated communication” just because I use my computer as a communication device.

Notes: