A pioneer in independent communication for non-speakers

Howard Shane is best known on these pages for his critical work on authorship in Facilitated Communication. He designed and conducted the early message passing and double blind tests that established that facilitators were the ones directing the messages; he has authored multiple scholarly critiques of FC; and he has served as an expert witness in multiple court cases involving FC.

But Shane is best known—all around the world—for creating scientifically valid alternative modes of communication for non-speaking individuals. And it is in the very earliest stages of this vocation that we see him in his recently published memoir, Unsilenced: A Teacher’s Year of Battles, Breakthroughs, and Life-Changing Lessons at Belchertown State School.

Unsilenced is an account of Shane’s year at a Massachusetts institution for individuals with cognitive disabilities. For the 1969-1970 school year, Shane worked at the Belchertown State School infirmary, teaching children with various debilitating physical impairments, particularly cerebral palsy and other movement disorders.

Among the most severely affected of these children were two who were able to communicate solely via certain gestures (blinking or looking up or down), which served as yes or no responses to questions initiated by others. In them, Shane sees great need and great promise:

After a lifetime of being unable to talk, both Ron and Ruth had become virtuosos of nonverbal expression. Smiles, glances, nods, and frowns were used to the maximum, including gestures for yes and no. Unfortunately, these methods offered little spontaneity and limited topics of discussion, and they produced extremely slow and labored dialogue.

Determined to improve Ron and Ruth’s communication options, Shane, just a few months into his term at Belchertown, came up with a technological strategy that anticipated one of the chief communication options, in the world of augmentative and alternative communication (AAC), for non-speaking individuals with fine motor difficulties: namely, “switch access scanning” or “switch scanning”. In switch scanning, a device scans through a series of items, highlighting them one at a time, while the user operates a switch that connects to the device. At the moment when the device highlights the item that he wants to select, the user hits the switch.

Shane’s first step was to retrieve an analog wall clock out of a storage closet, remove the glass cover and the hour and minute hands, cut a circle out of oak tag with the same circumference as the clock face, cut a hole in the middle of that circle, insert the circle into the clock, and check that the second hand still worked. He then made a number of similar circular oak tag “templates” with different items or words taking the places of clock numbers. Beginning with a template that displays a single item, a Milky Way wrapper, at 1:00, Shane tried out the device with the class, asking them to react when the second hand hit the candy bar. Next, he invited Ron to try it out by himself. Ron blinked when the second hand reached the target, Shane pulled the plug, and the hand stayed there. Then he had Ruth try out a different template: one displaying all the students’ names. He asked her to react when the second hand reached hers, and when it did, her eyes went up and he pulled the plug.

Aware though he was of the communicative possibilities—via different templates encircled by key words, or, ultimately, by letters and numbers—Shane was also aware of the limitations:

I knew my clock communicator has a major drawback: as long as Ron and Ruth depended on others to stop by pointing, the validity of their accomplishments—and even their intelligence itself—might be questioned. I worried that some might believe Ron and Ruth were not communicating independently at all, just observing others’ nonverbal cues. {Boldface mine]

Together with communication disorders specialist Henry Pierce, who became an informal consultant on the project, Shane independently conceived of the same kinds of strategies found in ABA guidelines to ensure against cuing (discussed in an earlier post):

We decided that one way to reduce the chances of this happening was for me to turn away from the template when I operated the clock for them and only watch the movement of their eyes, waiting for that upward gaze or blink. It was important to me that my fondness for these kids—and my eagerness that they succeed—wasn’t somehow influencing the results in their favor. For any potential skeptics, I wanted to make sure there was no question about who was actually controlling the device.

But even better, Shane recognized, would be for users to control the second hand directly via some sort of switch—a switch that they themselves could operate despite their motor challenges. Along with two engineering students from UMass Springfield, Shane developed a version of the clock communicator that connected a wristband housing a tube of mercury which, when rotated to a certain position, completed the circuit that kept the second hand moving. Equipped with this wristband, Ron and Ruth gradually mastered the arm movements needed to control the second hand and, for the first time ever, selected words independently.

Nearly forty years later (2007), Ron, with whom Shane had stayed in touch, was using a newer, head-controlled AAC device to type out messages like:

MARY! CHRISTMAS TO HOWARD SHANE. YOU MAKE ME A WHEELCHAIR FROM A CAR AND tricycle. AND BRING ME IN TO BRING ME IN TO YOUR HOME.

Unsilenced is moving, gripping, and heartfelt. As he tells his story, shares his observations, reflects critically on what’s motivating him, and describes his strategies, there emerge several key traits that strike me as major players in Shane’s post-Belchertown ventures—including his efforts to combat FC. There is his ingenious use of everyday materials, both to create communicative tools and to test their validity. There is his bold inclination to place the needs of his clients ahead of professional self-promotion—which, at Belchertown, results in the academic director refusing to renew his contract. Finally, there is Shane’s abiding commitment to true communicative independence for non-speaking people, including those with seemingly insurmountable physical and motor-based challenges.