as small as a world and as large as alone, Some people can communicate best when another...

6:41am May 27, 2015

Anonymous asked: Some people can communicate best when another human helps them, FC/RPM-style. I've read your story about having someone help you with motor issues when you wanted to type and needed resistance to make it work. But you've probably also heard of those cases where people were using FC with an autistic person, and an often oblivious facilitator did the actual speaking. Any recommendations to make sure an aide can't accidentally "speak over" the person doing the typing, pointing, or button-pressing?

The biggest one is to use as little support as humanly possible. Most cases of excessive influence involve people who are using more support than the person actually needs. Also, sometimes the influence is not passive – sometimes the disabled person is actively seeking cues, for any number of reasons. (One teenage girl in Australia who had CP, did it to cheat on tests in school, and then discovered she could get a lot of attention by claiming to be telepathic, so she claimed that… until she got caught by someone who knew better, at which point she explained the whole thing, got less typing support, and stopped seeking cues.)

But there’s always going to be a risk of that, even unintentional. Especially for people whose FC or RPM (which is a lot of people, far more than anyone involved likes to admit) is really a collaborative process between two people, at best – requiring the effort and thoughts of both people in order to come up with the words. At that point, it’s almost like having a coauthor, and the risk of having the wrong person’s words come out at the wrong time becomes heightened. Unfortunately, it’s also the reality for a lot of people. There aren’t easy answers to this.

There’s also people who deliberately influence people, and that’s a problem of weeding those people out. As well as weeding out people whose tendency to influence may not be deliberate, but is still very real. For some reason, a lot of the second type of people gravitate towards this kind of work. It’s sometimes very difficult for me to go to events where there’s a lot of FC users. Not because of the FC users, but because of the facilitators. There is always a large proportion (I’d say at least ¼ as a really really conservative estimate) of facilitators who can influence me from across a room, let alone touching me. By which I mean, they affect what I can and can’t communicate about, without even trying. It’s not that they put words into my head, but that they influence which words and topics I’m able to get out and which ones I’m not, making some more likely and some less likely. It’s hard to explain. I live in constant fear for the people who rely on such people for FC or RPM.

There are some facilitators who believe RPM is just FC in disguise, by the way. But it’s not. They’re different. They’re related, and they both rely on potentially dangerous ways of getting communication to happen, but they’re definitely entirely different techniques with entirely different backgrounds. There are just some FC proponents who like to call any kind of assisted typing FC, even though FC is one particular – very particular – method of assisted typing. A method that, in theory, is supposed to lead to independent typing, or at least to the greatest degree of independence possible for the disabled person. I’ve done a lot of research on this topic, in addition to personal experience and knowing a lot of people who use assisted typing either part-time or full-time.

Unfortunately, there will always be people who need techniques like RPM or FC in order to learn to type or handwrite. Not that the existence of such people is unfortunate, but that the fact they need such potentially dangerous techniques in order to communicate is unfortunate. Especially people who need versions of RPM and FC where it’s essentially a collaboration towards finding the right words, rather than just a way of helping someone who already knows the words they want to say. And also it’s even more dangerous in situations where a person’s main problem is exposure anxiety and they actually rely on the perception that they aren’t the person doing the typing really, in order to be able to type the words at all (otherwise their anxiety is so severe it paralyzes them). Basically any time the person actually is relying on influence or the perception of influence for some reason, the danger level goes up. But there’s no easy way to get rid of those situations without depriving people of communication, which I find to be an unacceptable thing to do.

The least dangerous situations are situations where:

The disabled person knows the words they want to type, they are just having trouble typing them independently.
The disabled person’s problems with typing are primarily motor or sensory, rather than related to anxiety or word-finding problems.
They are using as little support as possible for the person to use and still be able to communicate effectively.
The facilitator is not intentionally influencing the disabled person.
The disabled person is not actively seeking cues from the facilitator.
There is no belief (among anyone involved in the communication) that all disabled people, or all nonverbal disabled people, or all nonverbal autistic people, or all “real” autistic people (or substitute “most” for “all” in any of the above), etc., are telepathic.
The facilitator is not one of those people who can influence some people’s communication without even touching them, or worse, without even interacting directly with or being aware of their presence in the room. (No, I don’t know how this works, but I’ve experienced it, and so have many other autistic people I know, including people who never need and will never need FC.)
The problem of influencing non-communicative echolalia in communication is well understood by all involved, both in speech and typing.
The disabled person learns to use a wide variety of facilitators, not just relying on one person.
There’s a goal of working towards as much independence as possible. Possible doesn’t just mean “physically possible to do with a lot of effort”. It also means “possible to do without total exhaustion”. There are people who type independently to verify that they can indeed communicate on their own, but who type with more support when they need to communicate more quickly or easily or without burning themselves out. There are people who can type independently, but it’s so stressful and difficult on their body that they vomit, have seizures, or become incontinent. That is not acceptable unless they personally and without coercion accept it themselves.
There are plans put into place to test the validity of the communication on a regular basis. However, this is not possible for all people. For some people, this is an unacceptable intrusion, or makes them sufficiently pissed off or scared that they can’t type properly. I might even have been one such person if I needed assisted typing more often – when people try to test whether what I’m communicating is real, I usually get too angry to type. And yes, there really are people who assume that all typed communication is facilitated communication and that all facilitated communication is invalid, who will harass independent typers, including total strangers, about our ability to type. I have never been able to perform under such conditions, so I imagine it’s even worse when you’re using assisted typing of some kind.
The person’s continued access to communication does not rely on proving that they’re really the one typing. There is absolutely nothing more stressful to a user of assisted typing than the threat that their only means of communication will be taken away from them. People have committed suicide over this. People have also refused to ever type again over this – I know that sounds really weird on the surface, but it gives you the feeling that you’re still the one in control of whether you communicate. It’s like leaving before you’re forcibly shoved out the door, it feels like you retain a small measure of dignity that you’d otherwise lose. And for people not given much control or dignity in their lives, it can be very tempting.

And those are just a few of the conditions that affect facilitator influence. I’m discussing FC here more than RPM because I’m more familiar with it, but I am familiar with both of them and many of these things apply in RPM as well. It’s just the shape they take that’s different.