It’s asking the wrong questions. It’s that simple.
The question that it’s asking, typically, is, “Are all instances of FC (Facilitated Communication) true communication, or are they all bogus?” Typically, at this point, some FC detractor will pull out some study about how it demonstrated there was no communication from the FC user, but rather from the facilitator.
But let’s back up. What is FC? FC is a form of AAC (Augmentative and Assistive Communication) that uses the touch of another person or the support of a wrist by another person while the communicator (who typically does not talk) types or writes something. The controversy arises because someone holding the wrist of another person can obviously move that wrist, possibly typing their message yet claiming that it is the words of the person who doesn’t talk.
There’s several things I’ve seen people try to say about FC.
First, many people say, “FC shouldn’t be used. There are lots of computer programs and ways to communicate other than FC. One of them should be used.” I agree, when this is possible. FC immediately draws a user into a controversy, and his words are immediately suspect in the eyes of many. For that reason alone, it’s good to have a way that is less controversial to communicate. But the next question is whether or not such a way exists for the communicator. There’s a bit of an assumption that anyone can type/point/whatever without physical assistance when it’s assumed other means might exist. Not everyone is the same, and even though someone’s differences might be incomprehensible to you, it doesn’t mean those differences aren’t real. But, yes, when possible, other means should be used. I believe the FC community agrees with this and there is no controversy here.
Next, some people say, “FC is bogus because person X or study Y showed it to be.” Of course one person or one study just says things about one person or one study’s population, not necessarily everyone. Yes, some studies claim FC is false on the basis of studying some people who participated. There are critiques on some of these studies, but even if they do show what they claim to, it’s still possible that someone, somewhere is truly communicating with FC. I find it amazing that it’s okay to dismiss the potential for communication in someone else – and take away their voice – on the basis that someone else (or a lot of someone elses) was not truly communicating their own words.
The third thing is that there is an assumption about the intelligence and ability of people who have certain patterns of disability. Some people simply find it hard to believe someone who doesn’t talk, who needs full-time assistance, who doesn’t type independently, etc, could possibly have intelligence or things to say. It is surprising, which is why I think FC has received so much attention over the years, from both supporters and detractors.
Now, I know some FC is real. I can say this with certainty, because I believe it should take extraordinary evidence to question someone’s own self-reports. And there have been self-reports by former (and current) FC users that make it clear it is real communication. I’m not talking self-reports using FC to validate FC, but rather self-reports from people who now or also communicate through other means. If someone tells me, using speech, that their FC is real communication, I’m going to believe it unless I have extraordinary evidence to the contrary. Some names to look up (just two now, but there are more): Lucy Blackman, who now types independently and talks about how when she used FC, it really was communication; Sharisa Kochmeister also now types independently and supports FC.
I also think the “Is FC real?” debate, in addition to ignoring the voices of those who clearly know if it can be true communication and today communicate without any controversy, also ignores the real problem with communication and autistic people: influence. How many autistic people can truly communicate independently? Do you say the same thing with your mom in your room that you might say to a close friend (with mom nowhere nearby)? Now, imagine that you are always, in public, with a certain person. And imagine that this person is an abuser. What’s the chance you’re going to report abuse? Pretty much zero – you’re not going to do that in the presence of the abuser. That’s influence. Let’s go further and say that the only reason you don’t live in an institution is because one particular person is your support person. Are you going to say anything bad about that person, even when they aren’t around?
In addition to well-publicized apparently false allegation of abuse communicated with FC, there have also been real allegations – substantiated by FC and other evidence. It’s scary to me that abuse allegations by an FC user are now automatically dismissed (and also that unsubstantiated equates to false allegations in many people’s minds – that’s terrifying as well).
Influence, whether it’s someone moving your wrist or someone preventing you from speaking about abuse is influence. It can be done even without the person in the same physical space. Yet, this type of influence – which is exceptionally common for autistic people (too many of us do not have support systems that include enough people to continue to have support if one person left) – is pretty much completely ignored if the person types or talks “independently.” Yet we’re talking about things like reporting abuse. People need to be able to independently communicate. But the debate on FC has made us believe that “independent” communication can exist for someone who cannot truly communicate freely, due to dependence on or presence of another person.
It also goes the other way. I find I can express myself much more clearly and strongly with certain people around. So it’s not just a matter of getting us alone. It’s actually complicated.
We need to think a bit more broadly in this debate. It’s not black-and-white, no matter how nice it would be if it was. Sometimes, I might not know if someone is communicating independently using FC. That’s okay – particularly when the absence of that communication would have me listening to the person facilitating to represent the communicator anyhow! But I feel it can be an even worse error to immediately discount someone’s ability to communicate, when any possibility exists that they really are communicating. I also think we need to think long and hard about influence – and not just physical manipulation, but the emotional and social influence of, in particular, caregivers on autistic people. And we need to remember not everyone shares our abilities or situation.
I still hope for the day when every autistic person has ways to communicate with minimal influence (nobody in society communicates with no influence). That’s what we need to focus on.