While I don't think it can be said by any means that facilitated communication is one of the more frequent topics I write about (with over 800 posts written in two years, less than a dozen have been about FC), it is one that has popped up regularly since I first wrote about it a year ago. The last two pieces I've written about FC have been in collaboration with Dr. James Todd, who's been wading the FC waters for twenty years. His expertise is humbling for me, and I've learned a lot in the last year about FC that I didn't know a year ago. And what I'm learning is, if one is dedicated to the rights of the disabled individual, horrifying.
Not surprisingly, the advocates for FC find that judgment less than satisfying. The same few individuals show up at every piece posted at Science 2.0 to school us in how we're wrong, and even yesterday to tell us we're "causing severe harm" with our position. The comments are perhaps more illuminating than the post itself and worth the read. Examining the positions of the two sides: pro-FC and anti-FC reveals that one side, the pro-FC, ignores the weight of the scientific evidence, the AAP's and the APA's (and other organizations') official rejections of FC. They do this in favor of their anecdotal evidence which carries all the weight for them that the vaccine injury story carries for the parent who's firmly committed to the concept that vaccines caused their child's autism.
What might be surprising, though, are the places, the groups, and even the individuals who provide support for facilitated communication even though most of them would, if they recognized what was going on, have to deal with the fact that a debunked modality is being used in which the communication of the individual is clearly being co-opted. I say clearly, but perhaps it's only clear when you know what to look for and are willing to look for it.
Seeing FC happening in the middle of a feel-good story makes for some awkward decisions. What do you do when you read a story about an autistic individual graduating from high school and going off to college with his facilitator? Nothing like being a wet blanket is there? Or when you see videos going viral of a person suddenly freed from their 'silent prison' and able to communicate deep, intricate thoughts once they've gotten a facilitator?
I think most people hear these stories and are charmed, captivated by the possibility that the idea that the intact person exists, trapped behind autism, and they've become unlocked. I think this is true even in people who would be offended if an anti-vaccine parent talked about recovering the child from autism and setting them free; the two are not, in their minds, equivalent at all, especially since the facilitated person is clearly still autistic.
One of the arguments that facilitated communication proponents offer is that autistic individuals have such poor fine motor control that facilitation is necessary; however, one can see that the autistic person may indeed exhibit fine motor skills past the normal individual's fine motor skills.
I know, all too well, that when these feel-good stories come along, that there is often little I can really say. Videos of the individuals being facilitated are often cut so that you cannot see what the person is typing at the time, or how the facilitator is positioned. But occasionally you get lucky, and you can, if you know what you're looking for, see the elbow cupped, or my favorite, the facilitator holding one end of a stick while the client holds the other; boy, the typing is fast then. Even more obvious are some videos you can find on youtube of a child being restrained as he tries to run away, as he independently speaks, and while the parent holds that arm and the typing continues. Paid facilitators would tell you (and do) that this is the genuine communication: the typed communication, not the spoken. See, there's a disconnect between the autistic person's speech and thoughts, too. Not only are the fine motor skills impaired, so is the speech, so that the only way the person can genuinely communicate is when the facilitator helps.
The parents rarely go for independent verification, either, so that the legitimacy of the communication can be verified. Nor are videos going to be shot so that you can see everything going on. And you're just not going to get people who've bought into the claims of FC to reconsider their positions, regardless of the harm FC causes. Dr. Todd writes eloquently of this at Science 2.0.
At our latest post, my motivation for writing against FC is questioned. Why indeed should I tilt at this windmill when so many in the community either ignore it, pretend what's happening isn't FC, or outright support it by speaking at FC conventions or even worse, financially supporting Biklen? After all, Biklen has a large university supporting his efforts, he publishes books and produces films on it, and it's all feel-good stuff. Who's harmed, really?
Except for the individuals themselves who may find themselves sitting in classrooms earning college degrees because that's what the parent wants or being trotted out to events to showcase their story (and yet, we're willing to assert that some of the anti-vaccine people have Münchhausen by proxy?). Except for the parents who may find themselves behind bars because the facilitator's fabricated a story of abuse in which one or both of the parents were the perpetrators. Except for human rights in general.
This issue gets me fired up because it should get all of us fired up. We get so hot under the collar about parents chelating, HBOTing, nicotine patching, etc, but we don't spare any outrage for the idea that nonverbal (and sometimes VERBAL) autistic individuals are taken advantage of and words, ideas, thoughts, feelings, accusations are put into their mouths that are not theirs. This doesn't make us scream out in outrage?
I get desperately wanting to hear 'I love you,' to want that communication, that language, to believe that despite all appearances to the contrary, the severely autistic child in front of you is actually a genius trapped away who is paying attention to absolutely everything, but...but...but when you use facilitated communication, you're cheating. You're cheating your child and yourself. And it isn't right on so many levels.
There are alternatives to FC. FC is never ethical to use if protecting the rights of the individual is your primary goal. Our most vulnerable deserve our very best. They don't deserve shortcuts that put words and abilities onto them that are not them; it is a devaluing of who they are to say what they are capable of is not good enough.
So, yeah, I'm motivated. And I'm so motivated because it could have been me and Bobby once upon a time. So easily, it could have been. And I find that horrifying that my needs to reach him, to get him to demonstrate that he understood more than he could show would ever lead me to cheat for him, to shortcut it, because once you do, once you believe in FC, you quit trying to get that independent communication, you quit looking for alternatives and for skill building.