The Most Dangerous Assumption

In 1961, Anne McDonald was born with severe cerebral palsy and was sent away to an institution for disabled children at the age of three. Because she was unable to produce the motions necessary to speak or walk, she was considered profoundly intellectually disabled. As was tragically common in such places at the time, McDonald was neglected and starved. In her teen years, she still weighed less than 30 pounds — something doctors blamed on her disability but which more likely resulted from severe malnutrition.

Rosemary Crossley, an assistant at the hospital where McDonald stayed, decided to try to help her to communicate. Since McDonald was incapable of speech, Crossley tried to help her learn to point at letters, but ran into a problem: every time she tried to point, her arm would snap backwards. To deal with this problem, Crossley began holding McDonald’s arm in place so that she could point at things. With this support in place, McDonald was able to successfully point, and with Crossley’s help, began to spell out words and sentences.

A few people were concerned about whether McDonald was really the author of her own communication. Her mother tried holding McDonald’s arm but noticed nothing happened unless she moved it herself. Sometimes she would occasionally give McDonald messages to pass on to Crossley. McDonald did not. Crossley also helped McDonald falsely accuse Dennis Maginn, a doctor who was skeptical of their communication method, of trying to smother her with a pillow.

Crossley helped McDonald ask to leave the institution. McDonald was required to prove her ability to communicate independently in court and was shown two words, “string” and “quince,” while Crossley was not in the room. When asked to repeat them, she typed “string” and “quit.” Close enough, the court decided. McDonald was released from the institution and would go on to graduate college and become a prominent disability activist. Regardless of whether or not her communication was authentic, she was certainly better off outside institution than in.

Emboldened by her success, Crossley recorded these experiences in a book, purportedly co-authored by Anne, titled Annie’s Coming Out, and began using her new technique on patients with other disabilities. The technique was named facilitated communication (FC) and became popular once a Syracuse University professor named Douglas Biklen visited Crossley and, impressed, wrote an article praising FC in the Harvard Educational Review.

For a while, FC was considered to be a miracle, until with the aid of facilitators, a number of clients began spelling out accusations of abuse against family members. Many were proven false, and in controlled conditions, the facilitators were shown to be the true authors. After a PBS documentary called “Prisoners of Silence” publicized these cases and exposed FC for what it was, the method began to decline.

Once FC was proven to be pseudoscientific, it disappeared into the shadows. Now it’s back with a vengeance. As the disability rights movement has grown, many advocates have unfortunately fallen prey to the claim that to oppose FC is to oppose disability rights. The Autistic Self-Advocacy Network, an influential disability rights organization, has an FC user on its board and has filed a claim on behalf of five students in Arlington, Virginia, who were prohibited from using FC in school. TASH, another national disability organization, hosted a workshop in 2012 that was sympathetic to FC, and refuses to take a position for or against it.

Scott Lilienfeld, professor of psychology at Emory University, co-authored a review showing that FC is still commonly used. This review shows that between 1.6 and 9.8 percent of autistic children use FC. This percentage is larger than it appears, given that many autistic children can talk: a 2012 systematic review estimated that while 62 out of 10,000 people have any autism spectrum disorder, only 17 of those 62 have autistic disorder, a subcategory of autism that can only be diagnosed when there are “impairments in communication.” That means that 27.4 percent of individuals could possibly be considered to need FC, and out of that 27.4 percent, up to 35.7 percent use it.

There are a few individuals who have progressed from using FCs to typing independently. Lucy Blackman, an autistic writer and former FC user, can be seen typing independently in a video titled “My Partner, My Keyboard, and Me.” Sharisa Kochmeister, an autistic journalist and disability activist, was also shown typing without physical help in the documentary Loving Lampposts. However, these cases are rare and the chance that FC might help someone is offset by the much higher likelihood that their voice may be stolen and their life ruined.

Furthermore, often the people who supposedly “type independently” do rely on some form of support. In his book Communication Unbound: How Facilitated Communication Is Challenging Traditional Views of Autism and Ability/Disability, Biklen describes two FC users who typed “independently (with just the hand on the shoulder).” A hand on a shoulder can still be used to control someone’s arm or give cues to them for how they should move it.

Also, some legitimate techniques may appear similar to FC, but are in fact quite different. Some people who type independently may have a person support their arms when their hands get tired. Also, hand-over-hand prompting is a common, reliable method of teaching people how to do things with their hands, from typing to playing the piano to just about anything. However, unlike in FC, teachers who use prompting correctly acknowledge that their students may become too reliant on their prompts, and eventually require them to perform the task on their own.

For movement disorders like cerebral palsy, the idea of holding someone’s arm in place to help them type makes some sense. But for intellectual and developmental disabilities, it does not. Supposedly, FC is necessary because autism causes “apraxia,” or a lack of motor coordination so severe that it prevents people from typing on their own. It’s true that autism can cause movement difficulties, but not ones as severe as FC supporters claim. Besides, this difficulty only seems to show up when a keyboard gets placed in front of the autistic person. Larry Bissonette, an autistic FC user, has the fine motor skills to create exquisite paintings but supposedly needs outside help to type on his own. Also, even if apraxia was a problem in autism, that still wouldn’t explain why FC is used for people with other intellectual and developmental disabilities that do not include motor difficulties.

People who support FC insist that testing for authorship is demeaning and insulting — and that instead we should just assume that FC users are not being influenced by their facilitators. Ignoring that this is a blatant attempt to dodge the overwhelming scientific evidence against FC, the risks of not testing for authorship far outweigh the risks of not testing for authorship far outweigh the risks — if any — of checking for authenticity.” People have been raped and killed because nobody bothered to check who was really communicating. The worst thing that could happen if FC is fairly tested is that the client gets insulted — if such tests really are insulting. Personally, if someone had probable cause to think somebody else was forcing me to say things or consent to sex or make other important decisions, I’d rather have them risk annoying me than leave me in danger.

Saying that someone is being exploited through FC is not a judgment of their communicative potential. Many of the people who have been silenced through FC likely could communicate independently if they were given the right tools and education. Some might not, but contrary to what FC advocates might say this does not make them any less human. Barbara Stock, associate professor at Gallaudet University, explains that “it is precisely by adopting the stance that such people are potential thinkers and communicators that the puppet analogy becomes most chilling. They are people, already marginalized; it matters that we don’t also put words in their mouths.”

People with disabilities have spent years being silenced while others attempt to speak for them. Facilitated communication only continues this pattern of abuse. It is not progress.

ILLUSTRATION BY ALEXX ELDER

Leave a Reply

Your email address will not be published. Required fields are marked *