By Ralph Savarese
As someone who has written a lot about the communication predicament of nonspeaking people with significant motor impairment (particularly autistics), I have held off commenting on the Stubblefield case because I continue to believe that it is a very poor vehicle for talking about a range of important issues: from the efficacy of certain forms of augmentative communication, to the sexual rights of disabled people, to the role of race in the study of cognitive disability, to so-called “standards” of academic publication. (Disability Studies Quarterly printed an article that was co-authored by Ms. Stubblefield and Mr. Johnson—some scholars are now calling on the journal to withdraw it.) While I sympathize with what appear to be Ms. Stubblefield’s intentions and while I have no problem imagining that Mr. Johnson is intellectually competent or that he both consented to and actively desired sex, I question her judgment—especially with so much on the line for her, for him, for the principle of competence she believes in and for other nonspeaking people whose communication might now be dismissed as a result of the negative publicity that the case has engendered. Taking the stipulated facts (not what is still subject to argument), I would say that Ms. Stubblefield’s actions were exceedingly incautious. In almost every conceivable way she did not follow “best practices.” But this is not the main point of my post. Rather, I want to clarify some things that have been said on various LISTSERVs about facilitated communication. I refer throughout to nonspeaking autistics, but what I argue is relevant to other disabilities.
There is no doubt that the current scientific research on facilitated communication is quite damning, but, contrary to what many think, the issue is far from settled—at least from the perspective of many nonspeaking people themselves, some educators, and some scientists. Proponents of FC shouldn’t dismiss this research because it is genuinely troubling. We ought to be wary of promoting anything that has failed to be validated or, worse, caused real harm. I’m thinking, for example of cases involving facilitated communication where fallacious charges of sexual abuse were leveled against parents and/or caregivers who spent time in jail and lots of money defending themselves. Facilitator influence is a problem—a big one–that simply won’t go away. (Here, the notion of “best practices” would demand that accusations of sexual abuse—or, as in the Stubblefield case, claims of sexual consent—would have to be verified by multiple naïve facilitators.) I’ve said it before and will say it again: FC has indisputably produced fraudulent communication.
At the same time, there are legitimate issues with some of the studies that have debunked FC by showing that users couldn’t pass messages when supported by naïve facilitators. These studies, you might say, were inhospitable: they didn’t take into account the complex needs of their research subjects. They failed to control for uneven performance by not testing subjects repeatedly in familiar settings over the course of several months. They also failed to control for anxiety, which is a huge problem in “classical” autism. We now know, from studies on trauma, what profound anxiety does to the brain’s expressive language centers. Moreover, despite what FC’s opponents have said in response to the Stubblefield case, there have indeed been a number of users who have authenticated their communication through message-passing protocols. There is even a published article about a user who learned how to pass such a protocol after failing repeatedly to do so. There are also a number of autistics who now type independently—Jamie Burke, for example, or Sue Rubin or Lucy Harrison, or Alberto Frugone or Sharisa Kochmeister. (Kochmeister, by the way, used independent typing to help convict the person who had sexually abused her. Burke used it to learn how to speak, but he still prefers to type his thoughts before uttering them.) All of these people report that independent typing took years to master. While we can’t state with certainty that FC enabled this skill, it’s worth listening to what users have to say about the crucial role that it played.
It’s also worth remembering that opponents of the technique have often greeted even independent typing with aggressive skepticism, claiming, for instance, that Sue Rubin’s words in the CNN documentary Autism Is a World were programmed into her communication device and thus not really her own. The bar keeps moving for users; no amount of independence will suffice for some experts. Finally, there are any number of users who type with varying degrees of independence. I know of a young man in California whose father rhythmically taps his foot to enable his son’s typing. Facilitator influence is much less likely at the foot than at the hand. Should this person’s communication be dismissed? I know other users who, complaining of inadequate body awareness, require light pressure on their shoulder or back to feel their arms in space and thereby type.
My son, who still needs some facilitation to type, took the ACTs by pointing independently at answer banks; a scribe then filled in the bubbles. The “a,” “b,” “c,” and “d” were enlarged and positioned at the four corners of an eight-by-eleven sheet of paper. He did well enough to be admitted to a highly selective college where he is currently a fourth-year student majoring in anthropology. Pointing at answers in a straight-line motion is much less complicated visually and motorically than keeping track of both a keyboard and a screen in different planes. What is more, a keyboard, unlike blown-up answer banks, demands something akin to pinpoint accuracy. Because my wife and I included our son in regular education and stressed the importance of literacy, his teachers and classmates saw him learn how to read. In the process, they became acclimated to his emerging competence and alternative form of communication. This, along with the fact that he has had multiple facilitators (including some who were utterly lost in math and science classes), perhaps explains why he has faced little skepticism.
I do not wish to demonize FC’s detractors—in part because I have enormous respect for science, even as I understand the damage that scientific understandings of disability have often done, and in part because I have reservations about the technique myself. It is clearly less than ideal, and the need to have confidence in the communication of users can only be called reasonable. But I’d ask, in light of considerable research that now understands “classical” autism to be a profound sensorimotor disorder, what is the alternative? Should we allow intellectually competent people to languish, or should we employ this technique in a careful and responsible manner, at least until we develop a better one? A couple of recent studies using event related potentials (or ERPs) have shown that some children with “nonverbal autism and severely limited mental abilities” are functioning in ways that completely belie their diagnoses. Deploying an innovative protocol that did not require intentional participation, researchers measured a brain response that could only be the result of linguistic reasoning (http://blog.autismspeaks.org/tag/high-risk-high-impact-initiative/). At the very least, if the studies can be replicated, we are missing some form of already present ability in a portion of the nonspeaking autistic population. What might vigorous instruction accomplish for the rest?
The science of “classical” autism is in its infancy. In the above-mentioned subjects, researchers caught a neurological glimpse of previously unobservable competence; we still have no idea what the full implications of that competence might be or how to aid its unambiguous expression. But the studies are provocative. Paired with the testimony of people who type independently or who have successfully navigated message-passing protocols, they suggest that we have been devastatingly wrong in some of our assessments. All too often, dismissing FC is simply a way of being able to generalize negatively about an entire population. And if we generalize negatively about an entire population, we don’t have to worry about disturbing exceptions. We can rest easy in the unmessy conviction that nonspeaking people with autism are intellectually disabled and that FC is always and everywhere a fraud. As a friend of mine commented, “Efforts to delimit what is known are inherently opposed to burgeoning inquiry.” I would feel better about the opposition of FC’s detractors if they at least acknowledged the heartbreaking cost of dismissing the technique wholesale. Yes, there are other methods that enable nonspeaking autistics to communicate, but they tend to be more basic, and they don’t allow complex expressive language.
I am unwilling to dismiss FC wholesale. We are talking, after all, about people’s lives. Imagine being trapped in a body, as one autist describes it, that doesn’t allow you to show how much you actually know. Imagine being dependent on the paternalistic judgments and goodwill of the nondisabled people around you. At the same time, I refuse to condone using the technique irresponsibly. “Presuming competence” is a fine motto for those who work with nonspeaking people, but it’s not a magic wand. Rather, it’s a commitment to fairness and possibility. We may object to a culture that fetishizes independence or that has a history of making pernicious assumptions about disability, but that’s the culture we live in. We have to be pragmatic; legal accommodation depends on it.
One final thing in a post that is already much too long. A few people have asked about the Rapid Prompting Method (or RPM). Developed by Soma Mukhopadhyay, it involves holding a vertical letter board in front of an autist and encouraging him or her, repeatedly and insistently, to spell out words with a pencil. The letters have been cut out of the board, so the autist must put the pencil through the narrow, open space of the letter he wants. The theory is that the constant verbal commands work to capture the autist’s attention and the tight fit of the pencil in the space offers both tactile and proprioceptive feedback. Once the autist has mastered spelling out words, Soma begins to ask him or her questions—at first, simple fact-based questions and then more complicated, open-ended ones. The advantage of this method is that the person holding the letter board isn’t touching the autist at all.
Soma’s son, Tito, the author of five, well-received books and a young man I have mentored for years, began with RPM and now types and writes independently. We recently did an event about reading and discussing Moby Dick together by Skype, two chapters a week for seventeen months, at Duke University’s Institute for Brain Sciences. (When he met with researchers and clinicians in the morning and noticed they were all drinking coffee, he wittily typed, “My cup is filled to the brim with autism; you are welcome to drink from it.”) Soma has several hundred nonspeaking people, autistics and others, successfully using the method. The disadvantage of RPM is that the person holding the letter board must keep track of what is being spelled out–the method doesn’t easily accommodate lengthy expression. As important, its detractors can be almost as virulently skeptical as detractors of FC, claiming that the person holding the letter board is subtly manipulating it and thereby signaling particular letters. To these detractors, needing someone to communicate in any way is unacceptable. Finally, some users of RPM (including my son) want an actual voice and thus prefer to type with facilitation on a text-to-voice synthesizer.
I am of the opinion that until we find a way to convey human thoughts directly by circumventing bodily expression altogether, nonspeaking people will be confronted with doubt. In the meantime, we need to uphold the highest ethical and professional standards when we employ controversial therapies.
Ralph James Savarese
Professor of English
Grinnell College
Planet of the Blind 