Fighting for the right to communicate at Cal-Tash 2019

You might ask me, “So what did you do this weekend with your friends?” You might expect a cool answer like going to a ballgame, music concert, or movie. But I would like to tell you about how last March, I went to Cal-Tash 2019, a disabilities rights conference in San Diego.

Cal-Tash (The Association of the Severely Handicapped in California) is a place where the community of persons with disabilities meet annually with their providers and educators to advocate for their rights. People with disabilities need a forum to share their struggles, encourage one another, and educate the public about what’s working and not working for them to get the accommodations they need to integrate into society at large.

The reason I went was to advocate for the right to communicate through FC, which stands for facilitated communication. A lot of people with dyspraxia, meaning difficulty getting the body to motor sequence out an action, use it to communicate. At this point, I can type without anyone supporting my hand or touching me at all, but I would never have been able to get there without starting out with FC.

Our presentation began with a history of FC delivered by Darlene Hanson, speech and language pathologist and Director of Communication Services at REACH (Resource for Education, Advocacy, Communication and Housing), a comprehensive disability services provider with centers in Whittier and Monrovia. According to Anne McDonald, the first person to use it, she had severe cerebral palsy, and her dyspraxia was so advanced that the institution she lived in thought she would soon die as her body was contracting into a circle.

But a perceptive teacher, Rosemary Crossley, discovered she could point to picture icons to request things, and from there she learned to recognize letters, read, and spell.

Anne’s dyspraxia was too severe for her to type on her own, but with a little support at the hand and then the wrist, she could — hence facilitated typing was born! According to Hanson, Anne went on to get a college degree, and lived many more years as a productive, communicating person.

So have a number of other nonverbal FC-users. Unfortunately, we are a curious bunch. As I’ve written before, facilitated communication involves a lot more than just holding up another person’s wrist. It is a partnership of trust, a kind of joining of minds where the facilitator has to accept the idea that the FC-user earnestly has ideas but may have difficulty getting them out past a variety of potential brain glitches, such as inattention, difficulty with word-finding, difficulty with initiation, anxiety, eye-hand coordination issues, and (in my case) OCD.

So the facilitator has to know her FC-user well, to know which obstacles may be arising at any particular moment and how to assist the user around them in the most expeditious, efficient, and respectful way. The latter is a crucial requirement because the goal should always be autonomy, ie enabling the user to express what the user wants to say, not what the facilitator believes the user should say.

So if word-finding or initiation is the problem, the good facilitator will be patient and persistent, putting on her detective hat to come up with choices and guesses. She must be sensitive to the “Aha! That’s it!” indications of the user that signals her to proceed. As I have said before, FC is like a dance in which each partner is constantly perceiving and responding to the signals of the other, with the user as the leader or driver, and the facilitator supporting.

So what could be unfortunate about using such a wonderful method? It is unfortunate for scientists who try to study us because the very act of putting us in the cold, standardized conditions of a study protocol is likely to conjure up an impenetrable affective filter of massive test anxiety. After all, nothing is more likely to make a stutterer stutter than to tell him you’re testing him for stuttering.

We typers are anything but uniform and standard, and the very nature of dyspraxia makes our motor capacities highly inconsistent and variable from moment to moment as the very deficit lies in voluntary motor control. Rather than trying to force through the dyspraxia as if it did not exist, we depend upon the trusting relationships we develop with our FC partners and the unique set of cues and signals that we feedback on each other to make the dance around our disabilities work. Hence, there have been a multitude of studies on authorship with contradictory results, some showing that the facilitator was more the author than the FC-user, and vice-versa.

The studies proving FC-user authorship were generally preceded by lots of practice sessions to normalize the task of passing a message so that the FC-user did not get test anxiety. (I am not sure even this would work with all FC-users). The point is, studies exist in which some dyspraxic, nonverbal individuals have been able to pass a message that only they, and not their facilitators, were given. That fact cannot be explained away.

Furthermore, there are a number of FC-users who have made the jump to independent typing, so for them there is no doubt of authorship nor the question about the great utility of FC in their lives. But remember for many years, they did require facilitation to type — how could anyone claim that the method was “invalid” for them during those years? Unfortunately, the American Speech and Language Association recently had the audacity to come out with a statement claiming that facilitated communication is a discredited method because the studies on authorship for FC-users had mixed results. I personally feel that it’s the scientific validity of the negative studies that should be questioned, as they were probably testing for test anxiety instead of for authorship.

So a group of us dyspraxic, nonverbal FC-users were invited to this disabilities rights conference to counter ASHA and advocate for the acceptance of FC as a valid method of communication.

Three friends and I sat at the presenters’ table in the front of a small, but packed room of interested parents and educators. Jeremy Sicile-Kira, who learned to type through another method not recommended by ASHA called the Rapid Prompting Method, co-authored a book entitled “A Full Life with Autism” and served as a Youth Representative to the United Nations for the Autism Research Institute, as a youth leader for the Autistic Global Initiative, and as a youth advisor to the California Employment Consortium for Youth.

Sicile-Kira has synesthesia, which he said makes him see colors instead of people’s emotions. So he works as an artist painting portraits of people’s colors, which can be seen at jeremysvision.com.

“If I had not learned how to point to letters on a letterboard or to type, no one would have discovered this gift I have that makes people truly happy,” he said.

My friend Emma Cladis is in college, studying to be a screenwriter. She wrote and directed a beautiful film showing how FC has opened up the world of college to her.

“So the challenge is how do we give our best so that our teachers and fellow students can open their hearts and minds to us… It is magical when you see the lights go on in the professor’s eyes or in the eyes of other students. They not only realize that you are smart, but they really see you,” Cladis typed. “They see your ideas and your talents. They come to see you as a peer. I crave opportunities to interact with fellow students regardless of our challenges.”

My young friend Otto Lana is in junior high, in a beachside school where he swims in the ocean for an hour every day for P.E. class. He writes poetry and was the most vociferous advocate in our group.

“We may have rocky roads ahead of us,” he typed, “but at least we don’t have rocks in our heads!”

Otto is only 14 years old, so he can get away with saying things like that.

For my part, I tried to offer a visual analogy to help people understand how FC works. I showed a videoclip of myself trying to cross the street alone. My mom was across the street, cheering me on (and watching out for traffic). I knew what I should be doing and truly wanted to get across the street, but my feet simply wouldn’t go any faster than a slow crawl, and came to a long pause right in the middle of the road despite my attempts to urge my feet on.

Then I showed a videoclip of me dancing with Anna Shabazyan, my dear friend and ballroom dance teacher. Everyone gasped as they could not believe it was the same guy. With the rhythm, encouragement, and subtle occasional nudges of my partner, my movements were fluid and downright stylish. That’s exactly how FC works for me in the realm of communication and moving my ideas out, except for that there could be absolutely no question of authorship in the visual demonstration of my dancing.

I hope we made a difference in people’s attitudes. I hope more parents consider trying FC to unlock their nonverbal children, and I hope more educators are willing to offer it to their nonverbal or minimally-verbal students. It may take years or never for an FC-user to get to the point of having the word-finding capacity and motor initiative to become independent or even pass a message, but that does not make the method invalid. With a sensitive and respectful facilitator, FC can make the difference between imprisonment and autonomy. So in answer to your question of what I was doing that weekend with my friends, I suppose I could honestly answer that we were fighting for our lives.