(Cross-posted at FacilitatedCommunication.org).
Shortly after Netflix released it, just a few weeks ago, the latest facilitated communication documentary became a viral hit. But unlike the other popular, feature-length FC documentaries (Spellers, The Reason I Jump, Deej, Far From the Tree, Wretches and Jabberers, Understanding Autism, A Mother’s Courage, and Autism is a World), this one, Tell Them You Love Me, is critical of FC. That is, instead of presenting facilitated communication as a way to unlock purportedly intact language and literacy skills in non-speaking individuals with intellectual impairments, it shows, with excerpts of Dr. Howard Shane’s message-passing tests in Prisoners of Silence, how facilitators can completely control the facilitated messages.
Might this explain why so many of the pro-FC documentaries won various film festival awards while Tell Them You Love Me, as director Nick August-Perna writes in a recent account, was turned down even for a festival screening?
Gentle but painful emails trickled in from Sundance, SXSW, Tribeca, Sheffield, all letting me know that “after careful consideration,” because of the “massive number of submissions,” they would not be programming the film. And though it was funded in the U.K., not one European festival took the film. Some of these major festivals were transparent about being nervous about the subject matter, while others just sent formulaic responses. One major U.S. festival programmer initially watched the film and wrote me an effusive email saying she couldn’t stop thinking about it and wanted to make sure the world premiere was still available. This is almost always a sure sign. We had a premiere! But after many weeks of silence, I got word that they would be passing. She explained that internal conversations had revealed hesitations from within the programming team. They had “concerns.” They wanted it to be more focused on race while simultaneously including more experts in the disability world. The cautious tone of the rejection email was miles away from the delighted and viscerally positive reaction to the film I received just a month earlier.
Nor, despite “the best sales team a documentary filmmaker could want” was there any interest from networks; they gave “even less feedback than the festivals about why” they weren’t interested. No interest, that is, until Netflix finally bit.
What could all this nervousness and hesitation and concern possibly have been about? Should the documentary really have been “more focused on race”? Judging from the viewer comments I’ve seen so far, that will ring resoundingly false to anyone who watches it. More compelling is the notion that the film should have included “more experts in the disability world.”
This brings us to one of the most baffling things about facilitated communication. Despite its having been thoroughly debunked in the 1990s, and despite all the evidence that facilitators are (however unwittingly) hijacking the voices of some of our most vulnerable citizens, groups that you’d think would be concerned about FC instead appear to support it. I’m thinking, specifically, of self-styled autism and disability rights advocates.
In a couple of old blog posts (here and here), I’ve discussed the widespread support of autism advocates for FC, noting how this enables these folks to:
minimize the differences between non-speaking autistics and themselves, thus combating the criticism, made frequently by autism parents, that they cannot speak for those at the other end of the autism spectrum
promote the idea that autism is a difference, not a disorder, except inasmuch as disability is some sort of social construct (as in: give everyone a letterboard and a facilitator, and any apparent disorders disappear).
But I haven’t yet addressed the support for FC by disability rights individuals—a support that shows up in the large number of pro-FC articles in disability studies journals: Disability & Society and, especially, Disability Studies Quarterly, which alone has published four pro-FC articles since 2011 (see the references below).
It’s high time to fill that void.
One of the most vociferous, pro-FC disability journal articles comes from the person at the epicenter of Tell Them That You Love Me, the person who gets, by far, the most air time of all: a former Rutgers ethics professor by the name of Anna Stubblefield. As Janyce explained in an earlier piece, Stubblefield is a Syracuse-trained facilitator whose mother, Sandra McClennen, “was a first-generation facilitator and disciple of Douglas Biklen (who brought FC to the U.S. from Australia).”
And as we learn in Tell Them You Love Me, and also in an earlier New York Times exposé, Stubblefield fell in love with one of her clients and used facilitated communication to obtain consent to perform sex acts upon him, one session lasting for hours. Based on these acts and testimony from expert witnesses that FC is a discredited technique and that her client could not have given consent, Stubblefield was found guilty of two counts of first-degree aggravated sexual assault. Although the court overturned Stubblefield's conviction on appeal because of a technicality, she ultimately plead guilty to two counts of third degree assault rather than face a second trial.
One key detail that was left out of the documentary was an article published by Stubblefield the same year in which she began performing sexual acts on her client: an article in Disability Studies Quarterly entitled “Sound and fury: When opposition to facilitated communication functions as hate speech.”
The article makes a number of claims common to most pro-FC manifestos, namely:
Autism and other intellectual disabilities are movement disorders that impede the ability to point to things.
Since communication methods other than FC haven’t helped some people communicate much, FC is a reasonable alternative for communication.
Individuals whose facilitators no longer touch them must ipso facto be communicating independently.
Testimonials elicited through facilitation count as evidence for FC.
It’s unreasonable to insist that every time someone is subjected to FC the facilitation should be validated with a message passing test.
“FC has been validated as an effective means of communication for some people.”
All of these claims have been debunked by research cited elsewhere on this site, for example here, so I won’t dwell on them in this post.
What’s perhaps more relevant to the question at hand, namely the attempted suppression of Tell Them You Love Me, is Stubblefield’s take on hate speech. This purportedly includes the following—with my annotations added, italicized, in brackets.
“dismissing the words of an FC user as unworthy of consideration.” [All the evidence strongly indicates that the words of an FC user are actually the words of the facilitator.]
presuming that FC users are intellectually impaired. [All the available evidence suggests that the typical FC user is communicatively impaired, though not necessarily more generally cognitively impaired.]
“ignor[ing] explanations other than intellectual impairment for the unreliability of speech and pointing in FC users.” [A straw man. Or perhaps Stufflefield is confusing “ignoring” with “finding fault with.”]
“the refusal to seriously consider or provide evidence to refute substantiated argumentation that challenges one's prior beliefs, while issuing unproven assertions that undermine the words of those making or providing evidence for the challenge.” [Isn’t pretty much everyone guilty of this behavior— according to those who most vehemently disagree with them?]
“assert[ing] that withholding access to FC protects the rights of people who cannot speak.” [This one speaks for itself.]
“denigrating FC supporters” [Denigrating supporters of things one thinks are a really bad idea is routine behavior.]
“suggesting that open discussion about FC should be suppressed.” [Another straw man. Plus, it’s those who call FC criticism “hate speech” who are the ones calling for the suppression of open discussion.]
Stubblefield also cites three specific examples of hate speech:
A statement by Van Acker (2006) that “FC is predicated on the mistaken assumption that many individuals with severe communicative disorders (e.g., those with autism or severe and profound mental retardation) have a level of ‘undisclosed literacy’ that can be ‘tapped’ through this procedure.”
Jacobson et al.’s (1995) statement that “the everyday facility with which people with autism or mental retardation use a language (e.g., spoken, written, or pictorial) is an accurate depiction of their ability to do so and that there is no clinically significant phenomenon that inhibits the overt production of communication and ‘masks’ normative communication.”
Jacobson et al.’s (1995) statement that “that there is a strong presumptive relationship, in general, between overt production and actual ability is a cornerstone of psychological assessment methodology, statistics, and psychometrics.”
All I can say is I’m glad Stubblefield hasn’t been put in charge of moderating discussions in psychology and special education, let alone deciding what gets published.
Stubblefield also notes that “Fear mongering claims about FC and false sexual abuse allegations have been a staple of anti-FC rhetoric for years.” Perhaps she would now include her own case as yet another example.
And perhaps her colleagues in disability advocacy would as well. As Mark Sherry reports in an article in Disability & Society, the reaction to this case by disability studies scholars was uniformly in support of Stubblefield:
In all of the posts I saw, there was never a suggestion that people reach out to the family, even though many disability studies scholars met the victim’s brother when he read the victim’s purported paper at the Society for Disability Studies conference. In my opinion, the welfare of the disabled victim should have been paramount. I saw these scholars advocate on behalf of Stubblefield, who is a white, non-disabled woman, but I never saw anything to support the black disabled man who was the victim of this sexual assault. I even witnessed disability scholars soliciting contributions to her legal defense fund, but I never saw a single effort to support the victim. In my view, this response to rape is not only misdirected, it is unethical and shameful. The lack of concern for the victim and his family was chilling, disturbing, and alarming.
Sherry continues:
While the judge said the case was not about facilitated communication per se, many of Stubblefield’s defenders in disability studies stridently defended it, almost as a matter of faith. This was a mistake – facilitated communication is a practice that is demonstrably unscientific and unreliable. Their personal and financial support for Stubblefield must also be called into question. Stubblefield was convicted by a jury of her peers, after a five-week trial, and is now a registered (and incarcerated) sex offender. Given that the courts have found her guilty, it is incumbent upon disability studies scholars to critically examine their support for Stubblefield. Were they inadvertent rape apologists?
Sherry leaves that question unanswered, and so do I. All I can come up with is that, as some sort of accident of history, the field of disability studies was hijacked early on by some of FC’s most fervent believers. Perhaps, by now, they’ve had enough cumulative influence on society in general and on the entertainment industry in particular to have been able to suppress films like Tell Them You Love Me. And perhaps if the gears of history were rewound back, say, to 1980, things could have turned out differently.
I’ll end with two points:
First, there’s the reaction to Tell Them You Love Me by FC’s other most fervent believers: the devotees of Rapid Prompting Method and Spelling to Communicate. Are we hearing cries from them that Stubblefield was unfairly prosecuted because the facilitated consent was actual consent? Or insistent claims that RPM and S2C are different from FC because “no one is touching anyone”? Neither. Instead, there’s deafening silence. It’s as if they’ve all gotten together and decided that the less said, the sooner this movie goes away, and the sooner this movie goes away, the better it is for all of them.
For anyone who truly cares about disability rights, however, Tell Them You Love Me is an absolutely must-see. And this takes us to my final point: If you haven’t seen it yet, watch it tonight. Tell everyone you know to watch it. It’s one of the most fascinating, if disturbing, documentaries currently out there—right up there with Prisoners of Silence.
REFERENCES
Ashby, C., Jung, E., Woodfield, C., Vroman, K., & Orsati, F. (2015). ‘Wishing to go it alone’: The complicated interplay of independence, interdependence and agency. Disability & Society, 30(10), 1474–1489. doi:10.1080/09687599.2015.1108901
Biklen, D., Morton, M. W., Saha, S. N., Duncan, J., Gold, D., Hardordottir, M., Karna, E., O’Connor, S., & Rao, S. (1991). I AMN OT A UTISTIVC ON THJE TYP. Disability, Handicap & Society, 6, 161–179. doi:10.1080/02674649166780231
Jacobson, J., Mulick, J., and Schwartz, A. 1995. "A History of Facilitated Communication: Science, Pseudoscience, and Antiscience Science Working Group on Facilitated Communication." American Psychologist 50, 750-765
McKee, A., & Gomez, A. (2020). The voices of typers: Examining the educational experiences of individuals who use facilitated communication. Disability Studies Quarterly, 40(4). Advance online publication. doi:10.18061/dsq.v40i4.6981
Savarese, R. J., & Savarese, E. T. (2011). The superior half of speaking: An introduction. Disability Studies Quarterly, 30(1). Advance online publication. doi:10.18061/dsq.v30i1.1062
Sherry, M. (2016). Facilitated communication, Anna Stubblefield and disability studies. Disability & Society, 31(7), 974–982. https://doi.org/10.1080/09687599.2016.1218152
Stock, B. (2011). Mixed messages: Validity and ethics of facilitated communication. Disability Studies Quarterly, 31(4). Advance online publication. doi:10.18061/dsq.v31i4.1725
Stubblefield, A. (2011). Sound and fury: When opposition to facilitated communication functions as hate speech. Disability Studies Quarterly, 31(4). Advance online publication. doi:10.18061/dsq.v31i4.1729
Van Acker, Richard. 2006. Outlook on Special Education Practice. Focus on Exceptional Children 38, 8-18.
Wilson, M., de Jonge, D., de Souza, N., & Carlson, G. (2014, January). Facilitated communication training: Exploration of perceptions of ability and reducing physical support. Disability Studies Quarterly, 34(1). Advance online publication. doi:10.18061/dsq.v34i1.1741
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