CEDAR FALLS — A two-day University of Northern Iowa-based conference promoting, among other things, “facilitated communication” with disabled individuals will go ahead as planned this 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, 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.”
Calls to cancel
“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 Travers said a request for a meeting with senior university staff “have gone nowhere.”
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.
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.”
Mark Sherry, sociology professor at University of Toledo and among those who signed the letter to UNI, believes some people want facilitated communication to work out of desperation to connect with nonverbal 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. 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, he said.
“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.”
UNI officials didn’t respond to The Gazette’s questions Friday, including how much the university spends to host the Midwest Summer Institute or how many will be attending. The cost is $250 for both days.