Videos and stories of individuals suddenly communicating make their ways around the autism community, and while it is possible that great progress can be made and that nonverbal individuals can independently communicate through the use of alternative technologies, the reality is that there are many, many cases of communication by the disabled individual being co-opted by the facilitator.
A new documentary, Wretches and Jabberers, is getting a lot of play in the autism community. The Autism Society is promoting the documentary and will receive a portion of the proceeds. It's a win-win for everyone and everything except the truth.
Facilitated communication*, defined by Biklen as involving "hand-over-hand or hand-on-forearm support of students as they point to pictures, letters or objects to augment communication" has absolutely no credibility in the medical, psychological, and scientific communities. It has been thoroughly and completely debunked, although much like the fervor that the anti-vaccine people hold onto their quack theories, so too do facilitated communication supporters. It plays to the deep wishes of parents and caregivers that if only the right tools are made available, the voices of the disabled will be heard.
But here's what's really offensive: facilitated communication has been shown to be facilitator co-option of the communication. Some of these disabled individuals have limited speech, actual speech, and yet they continue to receive facilitation. Some of these individuals demonstrate good fine motor skills and would have absolutely NO problems typing, so why are these facilitators cupping the elbows of the clients? Why are they anywhere near them given what's been shown about FC? Our greatest responsibility as caregivers is to safeguard those in our care. Stealing their voices and their identities is a horrible thing to do, and even at the risk of doing so, it should be all the more imperative to do everything to ensure their words are truly their own.
Can someone explain why a man who has the fine motor skills to paint needs someone holding onto him to type?
Note the cupping and note when the individual isn't even looking at the screen.
Listen to the speech. If you can talk, even if it's limited, why is someone typing for you?
True disability rights advocates committed to the autonomy and self-determination of the disabled must come down squarely on the side of the science and decry the use of facilitated communication and rapid prompting method. They should be fiercely devoted to making sure that those without voices do not have words put in their mouths.
I have no doubt that significantly impaired individuals can communicate through the use of adaptive technologies, none at all, and I believe that every effort should be made to provide them with the equipment and the training to make sure that no one puts words in their mouths.
The New York Times reviews the film and notes, "The film is maddeningly vague about how the two men made their initial breakthroughs, but it certainly is proof that even those who are written off as children can find a voice." It's imperative that we make sure they're truly communicating, not the facilitator instead. Miriam Rinn offers a review of the documentary that quickly hones in on the problems in the documentary (and the problems with facilitated communication). Rinn points out a number of interesting concerns:
"Director Gerardine Wurzburg doesn’t explain why Tracy cannot live independently or find a permanent residence."
"It doesn’t explain why Larry and Tracy need anyone to guide their hands, yet we always see their assistants right next to them, often holding an elbow or a forearm."
"After all, if Larry can make coffee in the morning and paint in the afternoon (he’s an artist), why can’t he manage a keyboard or some other speech-augmenting device?"
"[W]e hear them “say” the same things over and over."
"The men don’t seem to have much to say about the different sights and sounds and foods they are experiencing, even though you’d expect a place like Thailand to seem very strange to a Vermonter."
Thank you for your frank and informative review of "Wretches and Jabberers," the latest installment in the facilitated communication (FC) pseudoscience propaganda juggernaut.
I have met and interacted on multiple occasions with several of the people in the movie, including the main characters. These experiences include having lunch sitting next to Larry Bissonnette, as well as many hours of FC "training" featuring Tracy Thresher, Harvey Lavoy (Thresher's facilitator), Larry Bissonnette, Pascal Cheng (Bissonnette's facilitator), Chammi Rajapatirana, and mother (also his facilitator).
My observations are consistent with your suspicions. I have seen nothing in anything they did to suggest that the typed communications are genuine. What I saw was facilitators controlling the typing. I don't think I just saw what I wanted to see--unless we are to believe that Mr. Rajapatirana, for instance, can type meaningfully while standing up, looking away from the keyboard, and trying to pull his wrist from his mother's grip. Tracy Thresher is perhaps more amazing, being able to type about a video on a screen not visible from his vantage point, but visible to his facilitator. Larry BIssonnette, for his part, seems a very nice man, and not without talents. But when his facilitator was absent, he answered every question with apparently random word repetitions and nodding assent, whether assent was called for or not. Of course, even though every one of these facilitators admits that facilitator control is a problem, none of them seems interested in subjecting their own extraordinary claims to objective testing. They been directly challenged. Apparently, facilitator control only happens to other people.
James Randi FC challenge: http://tinyurl.com/arkag
James Randi "Cruel Farce": http://tinyurl.com/yal738a
A question you might ask is why the Autism Society, which is supposedly in the business of promoting the well-being of people affected by autism, is advertising and profiting from a movie about the single most discredited intervention in the history of developmental disabilities. FC is a technique for which there is not yet, after 30 years, even one methodologically sound, peer-reviewed, objective demonstration of reliability. Dozens of published scientific studies show how and why FC fails. Facilitated Communication is a method which has, tragically, produced more imprisonments due to false accusations of rape than credible scientific demonstrations of effectiveness--the latter number being zero. Shouldn't the Autism Society know better? Shouldn't it be warning people? A note on Autism Society website may explain it all:
"Through the generosity of AMC and Wretches&Jabberers the Autism Society receives 10% of ticket sales."
James T. Todd, Ph.D.
Eastern Michigan University
*Once again, I must remind readers that I am not talking about the routine hand-over--hand initial teaching we usually engage in with our children, where supports are gradually removed as the child masters the skill sets being worked on. In facilitated communication, there is no learning curve: communication is instantaneous and advanced and believed to be the communication of the disabled individual alone.Nor am I talking about individuals who type independently.