Moving Beyond Science and Pseudoscience in the Facilitated Communication Debate

​It is an understatement to say that the case of Anna Stubblefield is simply controversial. Opinions of the former Rutgers professor, who was recently sentenced to some 10 odd years in prison for the charge of sexually assaulting a disabled man, are highly polarized. When reading comments on recent news stories on the case, one finds not only people who find her absolutely abhorrent but also people who empathize or support her side. No doubt there are important issues to consider regarding the rights of disabled persons, professional ethics, racism, and the nature of consent. However, I want to focus on how the framing of the case as a battle between science and pseudoscience prevents us from sensibly dealing with the politics underlying the issue.
 
The case is strongly shaped by a broader dispute over of the scientific status of “facilitated communication” (FC), a technique claimed by its advocates to allow previously voiceless people with cerebral palsy or autism to speak. As its name suggests, a facilitator helps guide the disabled person’s hand to a keyboard. In the most favorable reading of the practice, the facilitator simply balances out the muscle contractions and lessens the physical barriers to typing. Some see the practice, however, as more than mere assistance: they claim that the facilitator is the one really doing the typing, either consciously or unconsciously. In the former case, FC is a wonderful gift for those suffering from disabilities and their families. In latter reading, facilitators are charlatans, utilizing a pseudoscientific technique to deceive people. 

"Given our inability to see into the minds of people so disabled, both sides of the debate end up speaking for them in light of indirect observations."

​This latter view seems to have won out in the case of Anna Stubblefield, who claims that DJ--a man with profound physical and suspected mental disabilities—consented to have sex with her via FC. The court rules that FC did not meet the state standards for science. Hence, Stubblefield was unable to mount a much of a defense vis-à-vis FC.  
 
Most people fail to grasp, however, exactly how hard it is to distinguish science and pseudoscience—despite whatever popularizers like Neil DeGrasse Tyson or Bill Nye seem to claim. Science does not simply produce unquestionable facts, rather it is a skilled practice; its capacity to prove truth is always partial, seen far better in hindsight than in the moment. As science and technology studies scholars well illustrate, experiments are incredibly complex—only becoming more so when their results are controversial. The fact that many scientific activities are heavily dependent on the skill of the scientist is on the one hand obvious, but nevertheless eludes most people.
 
Mid-20th century experiments attempting to transfer memories (e.g., fear of the dark, how to run a maze) between planarian worms or mice exemplify this facet of science. Skeptical and supportive scientists went back and forth incessantly over methodological disagreements in trying to determine whether the observed effects were “real,” eventually considering more than 70 separate variables as possible influences on the outcome of memory transfer experiments. Even though some skeptical scientists derided skill-based variables as a so-called “golden hands” argument, there are plenty of areas of science where an experimentalist’s skill makes or breaks an experiment. Biologists, in particular, frequently lament the difficulty of keeping an RNA sample from breaking down or find themselves developing fairly eccentric protocols for getting “good” results out of a Western Blot or bioassay experiment. What some will view as ad-hoc “golden hands” excuses are often simply facets of doing a complex and highly sensitive procedure.
 
A similar dispute over the role of the skill of the practitioner makes FC controversial. After rosy beginnings, skeptical scientists produced results that cast doubt on the technique. Experiments involved the attempt to duplicate text generated with the help of a disabled person’s usual facilitator with a “naïve” facilitator or the asking of questions to which the facilitator wouldn’t know the answer. Indeed, just such an experiment was conducted with DJ, for which both sides claimed victory (Jeff McMahan and Peter Singer, for instance, argue that DJ is more cognitively able than the prosecution would have one believe). As has been the case for other controversial scientific phenomenon, FC only becomes more complex the more deeply one looks into it. Advocates of the method raise their own doubts about studies claiming to disprove the technique’s effectiveness, contending that facilitation requires skills and sensitivities unique to the person being facilitated and that the stressfulness of the testing environment skews the results in the favor of skeptics. There is enough uncertainty surrounding the abilities of those with autism or cerebral palsy to make reasonable arguments either way. Given our inability to see into the minds of people so disabled, both sides of the debate end up speaking for them in light of indirect observations.
 
Again, my point is not to try to argue one way or another for FC but to merely point out that the phenomenon under consideration is immensely complex; we simplify it only at our peril.
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Indeed, the history of science and technology provides plenty of evidence suggesting that we are better off acknowledging that even today’s best science is unlikely to provide sure answers to a controversial debate. Advocates of nuclear energy, for instance, once claimed that their science proved that an accident was a near impossibility, happening perhaps once in ten thousand years. Similarly, some petroleum geology experts have claimed that it is physically impossible for fracking to introduce natural gas and other contaminants to water supplies: there is simply too much rock in between. Yet, an EPA scientist has recently produced fairly persuasive evidence to the contrary. “Settled science” rhetoric has mainly served to shut down inquiry, and the discovery of contrary findings in ensuing decades only adds support to the view that reaching something like scientific certainty is a long and difficult struggle. As a result, scientific controversies are often as much settled politically as scientifically: they are as much battles of rhetoric as facts.  
 
Rather than pretend that absolute certitude were possible, what if we proceeded with controversial practices like FC guided by the presumption that we might be wrong about it? What if we assumed that it was possible the method could work—perhaps for a very small percentage of autistics and those born with severe cerebral palsy--but that we are challenged in our ability to know for whom it worked? Moreover, self-deception—like many believe Anna Stubblefield fell prey to—remains a pervasive risk. The situation changes dramatically. Rather than commit oneself to idea that something is either pure truth or complete pseudoscience, the issue can be framed in terms of risk: given that we may be wrong, who might suffer which benefits and harms? How many cases of sham communication via FC balances out the possibility of a non-communicative person losing their voice? In other words, do we prefer false positives or false negatives?
 
Such a perspective challenges people to think more deeply about what matters with respect to FC. Surely the prospect of disabled people being abused or killed because of communication that originates more with the facilitator than the person being facilitated is horrifying. Yet, on the other hand, Daniel Engeber describes meeting families who feel like FC has been a godsend. Even in the scenario in which FC only provides a comforting delusion, is anyone being harmed? A philosophy professor I once knew remarked that he’d take a good placebo over nothing at all any day of the week. On what grounds do we have to deprive people of controversial (even potentially fictitious) treatment if it is not too harmful and potentially increases the well-being of at least some of the people involved? I don’t have an answer to these questions, but I do know that we cannot begin to debate them if we hide behind a simplistic partitioning of all knowledge into either science or pseudoscience, pretending that such designations can do our politics for us