FC and “The Lottery”
Shirley Jackson’s The Lottery is a haunting story about a small community who gathers every year for a lottery that has devastating effects on the winner’s family. The people do not remember how the tradition got started. They do not question the ritual in any meaningful way. They go through the motions every year because…well, that is what they do. And, while some, fleetingly, feel a twinge of sorrow when the lottery winner’s name is called out, they, in a tragic example of group think and motivated reasoning, carry out an unspeakable act for no discernably good reason.
Image by Dylan Nolte.
In watching Facilitated Communication (FC) evolve (or more precisely NOT evolve) over the past 30+ years, I get the same creepy feeling reading pro-FC books and articles knowing that, in all likelihood, it is the facilitators’ words I am reading and not those of the individuals being subjected to its use.
FC works, we are told, because people using FC say it works. Questioning this claim is, by proponent standards, akin to hate speech, ableism or, “epistemological violence.” It is, unfortunately, an effective, if tiresome, way to keep many critics silent.
Early adopters of FC who did the right thing by participating in reliably controlled tests are being characterized by current-day facilitators as “poorly trained” or “overzealous” because they abandoned a technique that was shown to be deeply flawed. The messages obtained during these tests were not just dependent on facilitators, they were controlled by them.
Every facilitator on the planet thinks they’re immune from controlling FC-generated messages by subtle physical, visual, and auditory cuing, which is how FC “works.” (See Ideomotor Response). Practicing facilitators make disparaging remarks against former facilitators, I suspect, to psychologically distance themselves from the fact that, in reality, they are not immune.
Ironically, founder Douglas Biklen’s 1991 training video shows his own facilitators looking at a letter board and moving their clients’ hands while the people being subjected to facilitation physically turn their bodies away from the activity, close their eyes, or look off into the distance while being forced to type.
Biklen can also be seen in the 1993 documentary Prisoners of Silence talking to a facilitator/client pair while the person being facilitated is not looking at the board. This scene in the documentary comes directly after Biklen watched and critically commented on a video of a facilitator working with a student who was not looking at the board, saying “It’s not good technique. It’s very sloppy and I think it really raises questions about that particular typing and—as well it should. And what we need to do is to harp on facilitators to monitor eyes. It’s—it’s a lot for people to manage but I think we have to do it.” So, if accusations of overzealousness and ineptitude are going to be thrown in anyone’s direction, proponents may want to consider giving Biklen his due.
Biklen and one of his facilitators “supporting” the student’s arm to type. Biklen and the facilitator look at the keyboard while the student looks away and stims. (Prisoners of Silence, 1993).
The problem is that FC is a facilitator-dependent technique that, by design, cannot work as an independent form of communication, yet second and third generation facilitators seem to take the leadership’s word on faith. There—still—is no reliably controlled scientific evidence to prove that FC messages are independently produced and a growing number of organizations oppose its use.* Opposition to FC, however, only seems to deepen, not dampen, proponents’ insistence that it works.
In the U.S., FC started with Biklen’s 1990 article called Communication Unbound: Autism and Praxis. In it, he managed to convince thousands of otherwise reasonable people that a (literate) facilitator holding on to the wrist, elbow, or shoulder of a non-speaking individual with profound language difficulties while poking at letters on a letter board is not influencing the typed messages. (They are). And, further, that these communications are “independent.” (They are not).
It appears Biklen had no formal training in the treatment of autism, communication sciences and disorders, psychology, or research design when he decided to promote the technique. He was a self-described social scientist and, in his words, was “not limited to an examination of individuals and their characteristics.” (Biklen, 1979). His interest in FC seemed to be motivated more by politics (e.g., a push for deinstitutionalization) than the remedial treatment of individuals with autism.
His 1993 book Communication Unbound: How facilitated communication is challenging traditional views of autism and ability/disability, further championed FC and its purported effects on the disability community, despite growing scientific evidence that FC did not work as claimed.
A facilitator holding the child’s hand to type. She looks at the board while he looks straight ahead. (Prisoner’s of Silence, 1993).
In his book, Biklen wrote of his work: “we devised a set of criteria selecting people with whom to try facilitation…that basically ignored the traditional assumptions about autism.” (emphasis mine, p. 44) He viewed the “research tradition” of professionals and disability-related fields as a hinderance and purposefully rejected 50+ years of autism research to advance the promotion of FC. With facilitated assistance, it seems, individuals with profound disabilities could appear literate and ready for mainstreaming (e.g., in today’s terms, more neurotypical) despite continued behavioral issues (e.g., aggression, impulsivity, limited social and independent living skills).
Not everyone bought the story. Travis Thompson wrote in a 1994 review:
In this book no convincing evidence is presented for the validity of facilitated communication. Biklen refers to “conducting research” and to his “11 person research group,” but there is no evidence in this volume that an ethnographer, psychologist, educator, or sociologist would recognize as the product of systematic research. The book is a collection of anecdotes and testimonials. There are no research designs, independent or dependent variables, correlations, or reliability measures. No evidence is provided regarding the criteria used to diagnose autism, so the readers do not really know whose communication is being facilitated. Nothing here resembles research. (p. 671)
Sadly, Biklen set an example for his contemporary and future followers by absolving himself of the responsibility for proving his claims about FC. He states: “I undertook the study not to prove or disprove the effectiveness of a method (e.g., facilitated communication) or to invalidate assumptions about particular disabilities (e.g., autism) but to understand a phenomenon, in this case facilitated communication, and its implications.” (xi)
Biklen showed an astonishing lack of curiosity when it came to determining whether the communications were facilitator influenced or not. He not only took on faith that the FCed messages were “independent,” he rationalized away instances of facilitator control, and admonished his followers not to test the written output. It appears that the “presumption of competence” (code for “do not test”) was integral to marketing FC as an independent form of communication.
Andrew Bondy wrote in a 1997 review:
Throughout the book, Biklen sees no contradiction in using the word “independent” while simultaneously describing physical contact between the facilitator and the assisted individual. He gives no clear definition of independence. With neither a definition nor a procedure for verifying independence, there is no way to answer the central question in facilitated communication: Who is creating the messages?
One of Biklen’s trained facilitators looking at the keyboard and typing while the student stands up and turns his body away from the activity. He is looking at the wall. (1991 Syracuse Training Video)
Nevertheless, Biklen’s book provides ample support for questioning his definition of “independence”:
The student typed independently with just a hand on the shoulder
I think he completed DAD with no prompting but with wrist support
She guided him through the entire alphabet on the keyboard
Louis put his index finger on it and Crossley helped him push it down
For these, she was holding the top of his sleeve above the wrist
Her first sentence, typed independently save Crossley’s hand on her shoulder
Both girls who provided “incorrect” information in these instances communicated independently in other conversations, with only the support of a hand on the shoulder or a finger touching the thread of a sweater.
There is also ample opportunity to question the legitimacy of FC when facilitators expressed concerns over controlling the messages (e.g., due to the ideomotor response) and students:
exhibited unexpected reading, written language, and arithmetic skills despite no formal training in these subjects;
typed while not looking at the board;
spoke, hummed, or sang while typing out completely different words;
typed incorrect answers for information the client should have known (e.g., their own name, address);
purportedly learned to read and write through “incidental exposure” to television, books, food labels, and other items;
failed to exhibit characteristic language deficits for individuals with autism when being facilitated;
failed to initiate communication even though, supposedly, FC provided them a newfound communicative freedom.
John W. Jacobson wrote a review of Biklen’s Communication Unbound in 1993 and his words are still relevant today:
Within the FC paradigm, Biklen provides us with a perspective that is wholly supportive of greater self-determination and inclusion of people with disabilities. But this particular road to self-determination is littered with numerous assumptions and generalizations for which there is scant research support, an incomplete response to critics, circumstantial and imprecise means to assess independence of communication (i.e., although quantifiable, these are not quantified), and assertion of interpretations that are biased by a viewpoint that permits description only of ability, and omits mention of frank and overt functional limitations among people with severe disabilities. (p. 319)
With echoes of The Lottery, proponents continue to avoid testing for facilitator influence and insist FC works simply because they say it does. They choose to ignore or downplay the hundreds of facilitator/client pairs who have participated in double blind tests and failed. A number of these facilitators (characterized by proponents as “bad” or “poorly trained”) received their training at Syracuse University itself or through workshops hosted by Syracuse-trained facilitators.
In addition, proponents ignore or downplay the devastation to families from false allegations of abuse obtained via FC-generated messages, facilitator crimes (including sexual assault and manslaughter), and, following Biklen’s lead, put their loyalty to the promotion of FC above scientifically reliable evidence that FC cannot work as an independent form of communication.
Biklen, a Syracuse trained facilitator, and a client in an FC session. Biklen and the facilitator watch the keyboard while the client looks away and stims. (Syracuse training video, 1991)
When, on Prisoners of Silence, Biklen was confronted with evidence that FC-generated messages are facilitator controlled, he stated: “It’s very easy to fail in one’s attempt to demonstrate something. It’s usually more difficult to be successful. So it almost doesn’t matter how many instances of failed studies we have. What we need with any one individual are instances where the person succeeded.” (emphasis mine).
It may not matter to Biklen or his followers that behind all those failed studies are human beings whose lives were (and are) irreparably changed by the harmful effects of FC, but it does to me and other critics of FC that I know. It is partly why we started this website.
Admittedly, FC is a powerful illusion and, for some, a coping strategy. As psychologist and researcher Douglas Wheeler stated on Prisoners of Silence:
It was amazing to me to see how willing people are to abandon their beliefs and adopt a new belief without verification and to do that virtually overnight, because it happened to myself. And when I think back on it, if I had just thought about the literature on autism and thought about the studies I was familiar with, I would have known that the phenomenon of F/C was illogical, and that it probably couldn’t exist, but I was so caught up in the emotionality of it. And it just taught me a lot about human nature.
It may well be easier to delude ourselves (as facilitators) or stay silent (as lookers on) than to confront our colleagues or family members about their devotion to a discredited technique. These are never comfortable conversations. But, the weight of evidence is against FC working as an independent form of communication—and has been since the early 1990s. Unless, after 30+ years, proponents can produce reliable evidence to prove their extraordinary claims that FC messages* are truly independent (and not facilitator controlled), no individual with profound communication needs should be subjected to its use.
*This applies to all facilitator-generated typing techniques and methods, including Rapid Prompting Method, Spelling to Communication, Supported Typing, or whatever name proponents are calling FC. Organizations cite facilitator cuing, prompt dependency, lack of scientific evidence, potential for harms, and violation of human rights as reasons for not supporting its use.
Reference (not already linked):
Thompson, Travis. (1994). Communication Unbound: How Facilitated Communication is Challenging Traditional Views of Autism and Ability/Disability. American Journal on Mental Retardation. 98 (5), 670-673.
Transcripts of Frontline’s Prisoners of Silence.