Taking Shortcuts. A Review of “Contested Words, Contested Science”

In 1980, Rosie Ruiz crossed the finish line at the Boston Marathon with a time of 2:31:56, the fastest female time in the history of the event. The problem was she didn’t run the race. She waited in the crowd until an opportune moment, then ran a short distance to the finish line. Despite a convincing performance of a tired runner that fooled officials temporarily, Ruiz’s plan was flawed. Officials videotaped the race which proved she wasn’t on the course until the end. Despite this fact (and others that surfaced in the investigation), it seems Ruiz never admitted publicly that she didn’t run the race. She may have been motivated otherwise but, I think it’s safe to say, she wanted the glory of finishing the race without putting in the effort.

An image from Eight Days of Glory: the Myth of Rosie Ruiz, at the end of the 1980 Boston Marathon. Ruiz was later disqualified as details came out that she only ran roughly the last mile of the race. (YouTube video posted by K.P. Kollenborn).

Douglas Biklen and Donald N. Cardinal’s book, “Contested Words, Contested Science” reminded me of the Ruiz story. The book is a series of studies and personal essays written by proponents of Facilitated Communication (FC) in an attempt to promote the efficacy of FC and define the conditions in which FC “works.”

However, by 1997, when the book was published, multiple reliably controlled studies demonstrated repeatedly that FC-generated messages were facilitator authored and not the words of individuals being subjected to the technique. Despite these facts, Biklen, Cardinal, and others stubbornly stuck to their stories (literally testimonies, anecdotes, and poorly designed studies) that FC was an effective technique. It seems FC proponents wanted the glory of discovering a “revolutionary” communication technique without doing the work to prove its efficacy.

Contrary to what the authors of the book want readers to believe, the science wasn’t contested. Proponents just didn’t like what the science revealed about facilitation: that it didn’t work as an independent form of communication.

Also by 1997, several professional organizations had statements opposing FC, citing concerns over facilitator control, lack of empirical evidence, and potential harms. Dozens of false allegations of abuse cases had been reported by the mid-1990s, but this fact is marginalized in the book and presented not as a concern over facilitator control, but as a problem of presumed competence (e.g., the authors argued that FC statements should be considered valid in court cases even though the technique lacked scientific validity). The authors refer to the American-Speech-Language-Hearing Association (ASHA) and the American Psychological Association (APA), but omit other organizations that had adopted similar positions before the book was published: American Academy of Child and Adolescent Psychiatry (AACAP, 1993), American Association of Mental Retardation (AAMR, 1995; now AAIDD which continues to oppose FC and RPM), and the American Psychiatric Association Council of Representatives (APACR, 1994). (See ISAAC Position Statement, 2014). The list of organizations opposing FC has expanded, not decreased in the intervening years. (See Opposition Statements).

Like Ruiz, who took shortcuts to achieve her goals, the authors of the book lay out a plan for testing FC in ways that bypass scientific rigor. Their aim was to get the results proponents expected—not what the science had already revealed. If the initial goal was to prove FC was scientifically equal to existing evidence-based methods and techniques, their efforts had already failed.  

Instead of retooling their technique to eliminate facilitator influence and control, proponents embraced it. To them, FC worked because people using FC said it worked and the authors (largely leaders in the movement, facilitators, and researchers whose reputations were intricately linked with the promotion of FC) potentially had too much at stake to alter their belief system. In “Contested Words, Contested Science,” proponents urged FC practitioners and researchers alike to teach participants test protocols and allow facilitators to offer assistance by asking questions and discussing answers during the tests (even under supposedly blinded conditions).

Likewise, proponents urged researchers to use techniques that discounted the kind of scientific rigor that would rule in or rule out facilitator influence: interviews, analysis of written FC-generated materials, and portfolios, to name a few. They rhetorically blurred the lines between independence (e.g., without assistance) and authorship (e.g., control of the written output) by somehow convincing themselves that “support at the wrist, elbow, or shoulder” was “independent communication” and tests that demonstrated facilitator control were not valid measures of authorship because the facilitators weren’t given a chance to discuss the answers with their clients or the clients weren’t allowed to practice test protocols well in advance of the activity.

At several points in the book, different authors deliberately state that their purpose in studying FC was not to validate the technique. They saw their role as simply recording what others thought or how participants reacted to certain situations using FC. They seemed to be casting a wide net of plausible deniability in case what they saw conflicted with what they expected (remember all of the authors and participants in the book believed that FC was real). For example, when FC messages couldn’t be confirmed for accuracy or, indeed seemed to be complete fabrications, the authors showed a disconcerting lack of curiosity as to discovering why this might be. The same for facilitators who noticed their own, controlling behaviors during facilitation (e.g., the amount of force they were actually using on their clients’ arms or their own anxiety during activities designed to test for facilitator control). Several people described FC as a “fragile phenomenon,” as if it were some ethereal, unexplainable interaction that no one could possibly understand.

But these examples (and more) from proponents’ own studies are exactly why critics do not accept FC as a valid form of AAC. It is not enough for proponents to have these niggling doubts about facilitator control and do nothing about it or, worse, actively avoid controlled testing simply because it might (likely) reveal facilitator over-involvement in the typing activity. If the end goal is to have FC recognized as a legitimate form of AAC and to allow individuals with severe disabilities to communicate for themselves, as the authors of this book claim, then proponents, however motivated, have to take responsibility for their own actions in controlling FC-generated messages and stop taking shortcuts when it comes to scientific rigor. It’s been 24 years since this book came out…and we’re still waiting.