Last week the first part of my interview with Peyton and her mother, Dianne Goddard was published on the Huffington Post. Click ‘here‘ to read it. This portion of the interview was about the horrific abuse Peyton experienced at the hands of two people who were related to her and meant to care for her. The interview is an astonishing example of forgiveness, but a couple of the commenters questioned whether Peyton had, in fact, written the answers to my questions herself and presumably those same people also doubted whether Peyton was the true author of her book, i am intelligent. Disbelief, despite the fact that before the book was conceived, Peyton wrote about her abuse and it was confirmed by the two people who abused her. An abuse that was done in secret; an abuse so horrific it defies the imagination; abuse that went on for a very long time and was known by none, other than Peyton and those who abused her.
Last Friday I decided to devote a post to FC, you can read it ‘here‘ and while none argued against FC and those who use it here on this blog, one of the commenters on the Huffington Post piece wrote, “I am just relating the controlled scientific studies on FC. I am saddened that people chose to publish personal information and discount scientific data to mislead the public.” As I read this I thought, but therein lies, at least part of, the problem. This IS personal to many, many people. For those who use facilitated communication it is the difference between being able to communicate and being in this world in a way that is not available to them otherwise. It means no longer living a life in silence and feeling isolated, it means connection and it can mean the difference between being institutionalized or not. For those people and their families, FC makes all the difference in the world.
As I reflected on all of this and the swirling debate surrounding the legitimacy of FC as a “valid” form of communication I wondered about the term “scientific study”. What exactly constitutes a scientific study, what is the criteria for such a study, what are the guidelines? I found this site from the USDA and there’s this on Judging Criteria for Scientific Research and this, Understanding Scientific Studies where I read, “The scientific process is a road of discovery. It is the process of gaining knowledge about the universe through the observation of measurable evidence. Contrary to what many people believe, this ‘road’ is not a straight, smooth motorway: researchers may take different directions of exploration, going down routes that twist, turn, and sometimes even backtrack or come to a dead end, before the facts are uncovered. Even then, the facts uncovered may be only part of a larger, partially understood phenomenon, which requires further research before we come to more complete answers.“
To return to the question of FC there is much more to be learned. The studies that have been done to date - Investigation of authorship in facilitated communication, Contested Words, Springlink an Evaluation of 8 Studies, Facts About Facilitated Communication, A History of Facilitated Communication and A Validated Case Study of Facilitated Communication show the wide array of “scientific studies” and the resulting conclusions which range from, FC is a hoax to Facilitated Communication is a valid form of communication. Reading any one of the above links I’ve provided makes a compelling case for or against the use of FC.
And yet, for those of us who have personally seen FC used by people like Tracy Thresher, Larry Bissonnette and countless others I can say without a doubt that they are indeed speaking for themselves. I can recount my own experience with my daughter who learned to write and type with hand over hand support that was gradually lessened with time as she showed a greater ability to write and type independently. Today she no longer requires any support at all, types with her two index fingers, sometimes without looking at the keyboard and hand writes unaided as well. However there are people who, because of their physical disabilities, cannot do this, may never be able to do this, and so for them, a facilitator will always be necessary.
For those who question the validity of FC, by all means, read the many studies, educate yourself. As Amy Sequenzia once said to me, “it’s okay to be skeptical.” However in the case of FC there are enough “scientific studies” that conflict and in the end only prove that some people are communicating using FC and their lives have been transformed as a result and others have not been as fortunate.
For any who are interested, here is a video of Peyton using FC that she and her mother sent me.
This was a typed “conversation” I had with Emma yesterday.
Me: Hey Emma let’s type together!
Em: Happy birthday der Emma.
Me: Em, your birthday is in January, but you are thinking about your birthday now, right?
Em: Happy birthday.
Me: We’ve been talking about your birthday a lot lately. It’s exciting. We are planning to go to a hotel with a swimming pool for your birthday and then to Elite Gymnastics for your birthday party.
Em: And take a taxi.
Me: Yes, we will take a taxi!
Em: To go to that now howtel.
Me: Right! We will take a taxi to a hotel and we will spend the night there. All of us will go there together.
Em: Yes, we will take a taxi to go to that new hotel has a pool.
Me: Yes. We are going to find a hotel that has a pool. I know that’s what you want the most; a hotel with a pool.
Em: Go in your room.
Me: Then what?
Em: Get are batigsot on take the elvalr up to the rof and go swimming in the pool.
Me: Yes! We can go to our room, get our bathing suits on, take the elevator to the pool and go swimming in it. That’s a great idea. That sounds like so much fun!!
FC users Larry Bissonnette and Tracy Thresher (with his facilitator Harvey Lavoy) at the 2012 Autcom Conference
Tracy types during the Q & A at AutCom Conference 2012
Movie trailer of Wretches and Jabberers