A two-day University of Northern Iowa-based conference promoting, among other things, “facilitated communication” with disabled individuals will go ahead as planned next week, despite calls from researchers and academics around the globe that it be canceled.
The Midwest Summer Institute — in its fifth year — is co-sponsored by UNI, Waverly-based Inclusion Connection and Syracuse University’s Institute on Communication and Inclusion, formerly called the Facilitated Communication Institute.
The program involves breakout sessions Monday and Tuesday on topics aimed at promoting “best practices that lead to inclusion in environments from education to employment and beyond.”
But 30-plus academics and professionals — from Harvard Medical School, Johns Hopkins University, Emory University, the University of Melbourne in Australia, the University of London in England, and three UNI professors — have sent a letter to UNI College of Education Dean Gaetane Jean-Marie asking her to reconsider supporting the event and its promotion of “this invalidated and demonstrably harmful practice.”
call for cancellation
“We want them to cancel the conference,” Jason Travers, associate professor in the Department of Special Education at the University of Kansas, told The Gazette.
“They are charging people to learn about a dubious method,” Travers said. “It’s not only dubious, it’s dangerous, and they are giving college credit to students who are attending. I don’t see any legitimate value in maintaining a conference that is put on by proponents of this method.”
Jean-Marie didn’t respond to a request for comment Friday, and UNI spokesman Scott Ketelsen said she was out of the office.
Critics who sent the letter to her department May 15 said the university didn’t respond “except to say the letter and references were received.”
Travers said requests for a meeting “to discuss this issue with senior university representatives have gone nowhere.”
The facilitated-communication method in question has come under widespread and increasing scrutiny of late, with stories outlining concerns and exemplifying its dangers appearing in publications from Slate to the Washington Post and New York Times.
But the concerned collective’s communication to UNI notes the practice was “thoroughly discredited over 25 years ago.”
“The vast majority of national mental health, medical and educational professional organizations in the United States have policies declaring (facilitated communication) unscientific and unethical,” according to the group’s letter.
life-changing, advocate says
Facilitated communication — also known as assisted typing and closely linked to variants like rapid prompting method and hand-over-hand — is based on the notion facilitators can convey thoughts of non-verbal individuals by supporting their hand over a keyboard or other communication device.
Proponents believe it helps individuals steady themselves and slow down and offers emotional support, enabling communication that previously seemed out of reach.
Marilyn Chadwick, a speech and language pathologist from the Syracuse institute is an advocate and has been involved with the Facilitated Communication Institute since 1992, serving as director of training and assistant director, developing training and publishing standards on the method.
Chadwick, who is speaking at the UNI conference, told The Gazette that while no form of communication is perfect, the potential benefits of facilitated communication outweigh the risks.
“I have seen over and over and over again a person’s life change because he’s able to communicate,” she said, noting the work doesn’t occur in a vacuum and is part of a communication package that involves eye contact, among other things.
“Maybe the typing will lead to talking, and maybe the talking will lead to independence,” she said.
But extensive research published in peer-reviewed journals has discredited the technique, and organizations like the American Academy of Child and Adolescent Psychiatry and the American Academy of Pediatrics have disavowed it as “not a scientifically valid technique.”
The American Speech-Language Hearing Association recently came out with a draft position, calling facilitated communication “a discredited technique that should not be used.”
“There is no scientific evidence of the validity of FC, and there is extensive scientific evidence — produced over several decades and across several countries — that messages produced using FC reflect the voice of the facilitator and not of the person with a disability,” according to the association’s statement.
‘a Ouija board’
Mark Sherry, sociology professor at University of Toledo and among those who signed the letter to UNI, told The Gazette he’s been working in the field of disabilities for 20 years and believes some people want facilitated communication to work out of desperation to connect with non-verbal loved ones.
But it doesn’t, he said, citing double-blind studies through which researchers showed disabled subjects pictures and then showed facilitators different pictures and asked the subjects to report what they saw — using facilitated communication.
The answer over and over was the picture the facilitator saw — not the picture the person with disabilities saw.
“Every single study has found that facilitated communication is not legitimate,” Sherry said.
Its use has led to abuse, sexual assault and false accusations against family members, for example.
“What happens so often is that facilitators put words — whether consciously or unconsciously — into disabled persons’ mouths,” he said. “It’s a Ouija board. It doesn’t work.”
Sherry questioned the motives of institutions that keep promoting it, saying “there’s money in it,” via sponsorships and grants and student enrollment.
UNI officials didn’t respond to The Gazette’s questions Friday, including how much the university spends to host the Midwest Summer Institute, where the money comes from and how much it generates.
An institute website notes the event is “perfect for self-advocates, teachers, principals, paraeducators, therapists, family members, students, faculty, and staff.” The cost is $250 for both days.
The university also didn’t report how many people have registered for the conference. Students who participate can get college credit.
Although this isn’t the first year UNI has hosted the conference, Sherry said it’s the first time he’s spoken out against it and asked UNI to end it — after seeing an advertisement on Facebook.
“I would like the university to come out and be consistent with the scientific academic community and disavow facilitated communication,” he said. “This is not even debatable. Study after study after study for 30 years has found that the messages are offered by the facilitator.”
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