Abstract

The focus of this paper is the political aspects of the controversy over the use of FC as a communication tool and the ways in which anti-FC rhetoric oppresses FC users. In the face of studies that have validated the authorship of FC users, and given the growing number of former FC users who now type independently, continued anti-FC expression functions as hate speech when it calls into question, without substantiation, the intellectual competence of FC users, thereby undermining their opportunity to exercise their right to freedom of expression.


Truth has no chance but in proportion as every side of it, every opinion which embodies even a fraction of the truth, not only finds advocates, but is so advocated as to be listened to.

-John Stuart Mill, On Liberty

If you are powerful, you sometimes have the ability to silence the speech of the powerless. One way might be to stop the powerless from speaking at all…But there is another, less dramatic but equally effective way. Let them speak. Let them say whatever they like to whomever they like, but stop that speech from counting…

-Rae Langton, "Speech Acts and Unspeakable Acts"

Facilitated communication (FC) is a form of mediated communication that has been subject to controversy. Detractors have contended that the facilitator (the person providing support) rather than the FC user (the person typing with support) is the author of the communication produced and that, therefore, FC is not a valid communication tool. Although opponents of FC present themselves as engaging in scientific debate, some instances of continuing anti-FC expression meet the criteria to count as hate speech. While I am not going to argue here that such expression should be censored, the purpose of this paper is to draw attention to the function that such expression is performing. Identifying it as what it is—hate speech—highlights the political aspects of the controversy over the use of FC as a communication tool and the ways in which anti-FC rhetoric oppresses FC users.

The most recent work on hate speech has moved from categorizing hate speech as assaultive, derogatory remarks targeted at victims (e.g., name-calling, threats) to defining hate speech as expression that contributes to the oppression experienced by a social group by calling into question their intelligence, character, or rights and that undermines their ability to express themselves, be understood, and be taken seriously. In the face of studies that have validated the authorship of FC users, and given the growing number of former FC users who now type independently, continued anti-FC expression functions as hate speech when it calls into question, without substantiation, the intellectual competence of FC users, thereby undermining their opportunity to exercise their right to freedom of expression.

What is facilitated communication?

FC is a form of communication in which the FC user—a person who lacks useful speech and who has trouble regulating his body movements—relies on support from a facilitator who helps the FC user to stabilize his body so that the FC user can press keys on a keyboard with one finger, which enables him to access an open-ended means of communication. FC users are typically people labeled with cerebral palsy, autism, or Down Syndrome; they share the experience of not being able to consistently make their bodies do what they want (including speaking words they want to say, pointing to where they want to point, and holding their bodies in a stable posture that enables typing) and not being able to prevent their bodies from performing actions they do not want to do (e.g., uttering unintended words or noises, dysfunctional gross motor movements like jerks of the arm or body, unintended fine motor movements like reaching for and fingering or grabbing things they do not want). They typically experience proprioceptive challenges that interfere with using a keyboard (irregularity in neural feedback that prevents them from consistently tracking the location of the finger they are pointing with). Many experience trouble with initiating movements they want to make. Many experience lateral wavering in their hand or arm that makes it difficult to push the key they want. Some experience uncontrolled rapid jabbing at the keys that is dysfunctional. Some FC users also experience vestibular or other challenges that make it difficult for them to keep their bodies in a stable, upright position for typing (Crossley 1994; "Movement Issues" (CandLE website)).

The facilitator supports the FC user by providing him with an adequately stable and supportive seating arrangement; physically assisting or physically or verbally cueing the FC user to maintain a balanced, upright posture; gently restraining the FC user from performing unintended and dysfunctional movements like arm jerks or grabbing; and assisting the FC user to reposition his arm and hand in a neutral position above the keyboard after a jerk or grab has occurred. The facilitator uses verbal or touch cueing as necessary to help the FC user initiate movement. As the FC user moves his finger toward the key he wants, the facilitator provides resistance at the hand, wrist, forearm, or elbow. This helps the FC user to keep track of the location of his arm, hand, and finger; prevents dysfunctional lateral motion; and slows down impulsive movements (Crossley 1994; "Movement Issues" (CandLE website)).

Facilitators also provide encouragement to FC users. First, a competent facilitator presumes competence in the FC user; that is, from the first moment, the facilitator interacts with the potential FC user as if the FC user is an intellectually competent person of his chronological age who simply has difficulty controlling his body. The facilitator uses an ordinary conversational tone of voice and sets up initial evaluatory exercises in a way that demonstrates belief in the potential FC user's intelligence. For example, initial evaluation of pointing skills can be done with cards that contain age appropriate pictures and words, rather than just pictures. Evaluation of word recognition skills can be accomplished by asking the potential FC user to select the current president's name out of a set of names, rather than picking out a word like "cat" (of course, if the potential FC user has trouble, then it is appropriate to dial back and see if he can recognize simpler words; but trying first with an exercise that sends the message that you presume competence sends a crucial message of support to the potential FC user). When the FC user needs to do exercise work to help him move around the keyboard with more physical ease and less support, that practice can be accomplished through copying a variety of long, interesting words (increasing his vocabulary), rather than through typing his name or easy words over and over again. Good facilitators encourage FC users by making it very clear that the former recognize the difference between having physical difficulty in performing an action and having intellectual difficulty in performing it.

Furthermore, the physical act of typing is difficult for someone who requires support: it requires very focused attention and coordination of movement that does not function automatically for the FC user. Like a coach cheering on an athlete to greater feats of prowess, so the facilitator encourages the FC user: "You can do it, you've got this, I believe in you." Some FC users may find themselves easily distracted by sensory input or anxiety. The facilitator helps to cue their attention back to the typing they want to complete. Some FC users may have trouble with word retrieval in certain circumstances or with typing words they do not intend to type. The facilitator cues them to slow down and work through what they really want to say or cues them to restart if they fall into repetitive, meaningless typing (Crossley 1994).

Just like any other form of augmentative communication, FC does not necessarily work for everyone who cannot speak usefully and who has trouble regulating his body movements. And some FC users may require support in addressing various learning challenges in addition to the communication support provided by FC. A premise of this paper, however, is that because FC has been validated as an effective means of communication for some people (see below), it is an important tool for inclusion in the repertoire of speech-language therapists, augmentative communication specialists, and educators, so that people for whom other means of communication have been unsuccessful or are too limited can have the opportunity to try it. A further premise is that support providers do more harm to people who cannot speak and have trouble regulating their body movements by presuming that they are profoundly intellectually impaired and will never be able to communicate effectively than they do by presuming that the people they support are more intellectually competent than their lack of useful speech and difficulty pointing suggests (Donnellan 1984).

Furthermore, FC has been criticized because there are instances in which FC users' words have been misinterpreted or poorly trained or inexperienced facilitators have influenced what is typed. But misinterpretation is possible with all forms of communication, including spoken communication, and poor facilitation is remediable through careful training and supervision. A final premise of this paper is that FC should be judged by the same standards as any other method of communication, not dismissed because sometimes it fails to meet a higher standard.

The history of FC detraction

FC was developed beginning in 1977 in Australia by Rosemary Crossley and Anne McDonald (Crossley and McDonald 1984).1 Douglas Biklen, now the Dean of the School of Education at Syracuse University, learned about FC and introduced it in the United States in 1989 (Biklen 1993, Ch. 1 and 2).

As the use of FC began to spread in the United States, skeptics began to voice concerns. To an uninformed observer who does not understand that the facilitator is providing resistance to the FC user, it can look as if the facilitator is guiding the FC user's hand toward the keys. And FC users are people who, by definition, are unable to speak usefully and unable to point accurately without support, which means they are people who were labeled as profoundly intellectually impaired because they could not perform on intelligence tests, even those designed for non-verbal test takers. Although some FC users have to learn literacy skills (like Anne McDonald, who had spent her childhood in an institution where she was deprived entirely of access to literacy), those who have lived with their families typically pick up at least some basic literacy from parents reading books to them or their siblings, watching shows like Sesame Street on television, and paying attention (even if teachers did not realize it) to lessons being offered to their supposedly less impaired special education classmates. But to an observer who assumes that the FC user is profoundly intellectually impaired, it will appear unbelievable that he can be given access to a means of communication that involves literacy and immediately type meaningful words and sentences. And in response to explanations from well-trained and experienced facilitators that they were providing resistance and could clearly feel FC users moving to keys of their choice, skeptics argued that an ideomotor effect was occurring in which well-meaning facilitators were not even aware that they were unintentionally cueing and guiding the word choice of FC users (Biklen 1993, Ch. 5).

In 1978 and 1979, Anne McDonald successfully passed "message passing" tests, in which she conveyed information unknown to the facilitator in controlled conditions (these were accepted as evidence by the Supreme Court of Victoria in McDonald's lawsuits to manage her own affairs and leave the institution where she had spent her childhood) (Crossley 1997; McDonald, "Proving I Exist"; Crossley and McDonald 1984). Furthermore, validation of authorship by 4 out of 6 FC users tested was confirmed in a study conducted by the Intellectual Disability Review Panel in Melbourne, Australia, in 1989 (IDRP 1989; Crossley 1997, 212-214). Subsequently, however, four message passing studies were undertaken in the early 1990s in the United States (Klewe 1993; Moore, S. et al. 1993; Szempruch and Jacobson 1993; Wheeler, et al. 1993). The conclusion of these studies was that facilitators were influencing the typing and that FC was therefore invalid as a communication tool.

In the same year in which these studies were published, PBS aired an episode of Frontline entitled "Prisoners of Silence" that portrayed FC as a hoax that had been sold by Douglas Biklen and his colleagues to unsuspecting family members and educators (Palfreman 1993). The show detailed the 1993 study by Wheeler et al. that concluded that FC was invalid and showed a young woman failing a message passing test constructed by Howard Shane (a speech-language pathologist currently affiliated with Children's Hospital Boston, Massachusetts General Hospital, and Harvard Medical School). John Palfreman, who wrote, directed, and produced the episode, did not, however, discuss Anne McDonald's case or the Australian study that provided evidence for the validity of FC. Furthermore, while he included footage of a young woman, Sharisa Kochmeister, sitting next to her father while her father discussed her use of FC, he did not include footage showing Kochmeister typing, although at the time she was filmed, she had moved from using FC to typing independently.

On November 5, 1993, a few weeks after the airing of "Prisoners of Silence," a press conference was held in Chicago by TASH (The Association on Severe Handicaps), ADAPT (a prominent disability rights organization), and the National Parent Network on Disabilities, protesting Palfreman's biased reporting. Kochmeister, typing without physical support before an audience of several hundred people, wrote:

They denied me my freedom of speech—a basic civil right. The[y] impugned my integrity and insulted my intelligence. They told evil lies in the guise of honest reportage. I deserve to be heard. If my name and image are used, why not my words? We need to fight bigotry with one loud unified voice. I have a voice now. They will not return me to prison. (Kochmeister 1993)

Nonetheless, the result of the airing of "Prisoners of Silence" was that support for FC was pulled from schools and adult programs around the nation and several professional organizations adopted anti-FC policies.

Subsequently, however, studies were carried out that validated authorship by FC users (Janzen-Wilde, et al. 1995; Biklen, et al. 1995; Sheehan and Matuozzi 1996; Weiss, et al. 1996; Cardinal, et al. 1996; Marcus and Shevin 1997; Bundschuh and Basler-Eggen 2000; Emerson, et al. 2001; Zanobini and Scopesi 2001; Niemi and Kärnä-Lin 2002; Tuzzi, et al. 2004; Tuzzi 2009). Furthermore, more FC users have become independent typers, including Birger Sellin (Crossley and Borthwick 2002, 10), Sue Rubin, Lucy Blackman, Alberto Frugone, and Jamie Burke (Crossley and Borthwick 2002; Biklen 2005).

Immediately following the airing of "Prisoners of Silence," five more studies were carried out in which FC users failed message passing tests (Regal, et al. 1994; Cabay 1994; Shane and Kearns 1994; Crews, et al. 1995; Montee, et al. 1995). Since then, the only studies that have purported to demonstrate the invalidity of FC as a communication tool have been a study of the "ideomotor response" (guiding someone else's movement without realizing it) involving college students with no formal training as facilitators (they watched an FC "training" video) "facilitating" confederates posing as non-speaking disabled people (Burgess, et al. 1998) and a study of "facilitator influence" involving college students with no training as facilitators "facilitating" confederates who were, in contrast to actual FC users, purposely avoiding making their own responses (Wegner, et al. 2003). Such studies provide no useful insight into the support properly trained and experienced facilitators provide to actual, experienced FC users.

Debate over the validity of FC that has been carried out through published research reflects ongoing disciplinary uncertainty within the field of augmentative communication (AC) (also referred to as augmentative and alternative communication), which in turn reflects an ongoing dichotomy within the social sciences. In "What Constitutes Evidence?", Crossley and Borthwick observe that AC, as a newly-emerged discipline, lacks established criteria for evaluating practice, outcomes, or research:

AC remains a disparate and unconnected series of pragmatic methods without the recognized and codified common body of knowledge, and the procedures for identifying such common knowledge, that characterize longer-established professions such as medicine…At the moment, AC is at risk of taking on the epistemologies of other fields without examining how relevant they are to what we actually do. (Crossley and Borthwick 2002, 3-4)

Thus, debates over the effectiveness of various augmentative communication methods, including but not limited to FC, reflect the dichotomy between those who believe that various forms of AC should be evaluated solely based on quantitative research conducted under controlled and double-blind conditions and those who believe that AC is not amenable to being evaluated solely or primarily in this way and that qualitative research, supplemented with quantitative research when feasible, is more useful (Crossley and Borthwick 2002, 4-5). This dichotomy, in turn, mirrors a general ongoing debate within the social sciences over the merits of quantitative and qualitative research (Biklen 2005, 1-17).

When FC was first introduced in the United States, it was legitimate for researchers to be concerned about the validity of this communication tool and to want to test it. But after conducting research during a period of only a few years, those who were skeptical about the validity of FC became complacent. They failed to generate new research in response to challenges to the studies they had performed, discounted subsequent quantitative research that validated FC, and dismissed completely qualitative research on the presumptive grounds that only quantitative research should count. Furthermore, they failed to take into consideration the published accounts by people who have moved from using FC to typing independently (Mostert 2001; Crossley and Borthwick 2002; Mostert 2010). The result is that much of current anti-FC expression functions not as ongoing, principled, scientific debate, but rather as hate speech that undermines the access of FC users to their method of communication while casting doubt on the veracity of their words, thereby undermining their freedom of expression.

What is hate speech?

Freedom of expression is a core value of our democracy. In On Liberty, John Stuart Mill captured the importance of protecting freedom of expression when he argued that free speech is necessary for the acquisition of knowledge and hence for human progress. Humanity moves forward only insofar as we approach ever closer to a true understanding of the universe and ourselves. We can only accomplish this by people testing their beliefs against the beliefs of others—that is, by engaging in an open exchange of ideas in which beliefs are assessed critically according to their intrinsic merits (Mill 1859, Ch. 2).

If the purpose of protecting freedom of speech is to protect the free exchange of ideas, however, then some speech clearly does not contribute to this purpose, and such speech has never been protected in the American legal system. Examples of speech that is not protected include defamation, orders to kill or harm someone, and speech acts that are likely to lead to harm (e.g., yelling "Fire!" in a crowded theater as a prank).

Furthermore, the United Nations' International Convention on the Elimination of All Forms of Racial Discrimination, adopted in 1965, requires member states to combat the dissemination of ideas that justify or promote racial hatred or incite people to acts of racist discrimination or racist violence (United Nations 1965).2 The convention thus functions as an early articulation of the idea of hate speech.

The focus of the United Nations convention was propaganda: speech acts for which "the envisaged hearers are other racists, or hoped-for racists, rather than members of the group targeted for hate" (Langton, 7). In the late 1980s, however, critical race theorists began to observe that some racist hate speech directly attacks its target, thereby functioning as a form of assault intended to intimidate or otherwise inflict psychological injury (Matsuda 1993, 36; Langton 2011, 7-9). Both the language of the United Nations' declaration and this latter approach to defining hate speech suggest that the conflict in rights caused by hate speech is a conflict between freedom of expression and the right to freedom from harm.

But other theorists have observed that, in some cases, the effect of hate speech is the silencing of those people targeted by the hate speech, and thus that the conflict in rights caused by hate speech is a conflict between freedom of expression and freedom of expression. Charles Lawrence, for example, argues that:

When the Klan burns a cross on the lawn of a Black person…the effect of this speech does not result from the persuasive power of an idea operating freely in the market. It is a threat; a threat made in the context of a history of lynching, beatings, and economic reprisals that made good on earlier threats…The threat does not need to be explicit because racially motivated violence is a well-known historical and contemporary reality…The Black student who is subjected to racial epithets, like the Black person on whose lawn the Klan has burned a cross, is threatened and silenced [my emphasis] by a credible connection between racist hate speech and racist violence. (Lawrence 1993, 79)

Similarly, feminist theorists have argued that pornography can function as hate speech by silencing women. Two examples laid the groundwork for subsequent discussion. First, when pornography depicts women as refusing sex but really wanting it or as enjoying being raped, it can lead men who consume pornography to believe that "no" does not mean "no." Thus, women who attempt to refuse sex are silenced, because their speech acts of refusal are not understood as such by the men to whom the speech is directed (Langton 1993, 320-321). The second example is the case of Linda Marchiano, who performed under the stage name "Linda Lovelace" in the pornographic film Deep Throat. Marchiano later wrote a memoir in which she revealed that she was beaten, hypnotized, and tortured during the making of the film. While her memoir was recognized by feminists in the way that Marchiano intended—as a condemnation of the pornography industry's treatment of women—it also appeared for sale in mail-order catalogues for "Adults Only" reading. Marchiano's declaration against pornography was sold and consumed as pornography, thereby silencing her attempted act of protest (Langton 1993, 321-322).

What does it mean to say that one person's expression of his beliefs prevents another person from expressing her beliefs? Debate on exactly how this occurs continued throughout the 1990s and into the 2000s (Maitra 2009). Two papers in a forthcoming anthology—one by Rae Langton and one by Caroline West—present particularly useful analyses that address some weaknesses in previous views. It is not within the scope of this paper to put forth the entire debate or to defend these papers. Rather, I use Langton's and West's new work to demonstrate how some anti-FC rhetoric functions as hate speech.

Langton argues for defining hate speech in terms of what she calls the "pragmatic model." In this model, speech that functions as hate speech does so by undermining the ability of those subordinated by the speech to function as equal participants in the conversational forum within which the hate speech occurs. According to Langton, acts of hate speech affect the common ground of a conversation or public debate by making it impossible or impermissible for either the views of those subordinated or challenges to their subordination (either from themselves or others) to enter or be taken seriously within the conversation (Langton 2011, 17-19). Take, for example, a conversation about women's rights. If a male participant declares that "the problem with women is that they are always irrational," and all the other men in the conversation agree (perhaps laughing ruefully), then that affects the common ground of the conversation. Subsequent speech by a woman who tries to offer reasoned evidence (either about the rationality of women or in favor of protecting women's rights) has already been discounted because she is an irrational woman and her views cannot count as logical argumentation.

If we accept Mill's argument that the value of protecting freedom of speech is so that humanity can benefit from progress toward discovering the truth through considering differing points of view, speech acts that put an end to consideration of different points of view are not contributing to the goal that freedom of expression is supposed to further. Freedom of expression is hampered when certain speech acts cut off further discussion. In this example, moreover, women are not only silenced in the sense that their subsequent speech acts are discounted within the conversation. They are also silenced by being disabled from arguing on their own behalf. A male participant could disagree with the other males and offer evidence to support the claim that women are, in fact, rational, which would keep the conversation going in the Millsian sense. But that places the woman into the role of having to be quiet and sit back and let a man defend her, which plays into the cultural structure that has oppressed her in the first place. So women are "damned if they do, damned if they don't" in this case: the derogatory speech act has made it such that the woman cannot defend herself, and if she is forced to rely on a man to defend her, then women's subordination is not really being challenged.

As I will explain in detail below, anti-FC rhetoric functions as hate speech along the lines of Langton's pragmatic model when FC detractors base their discussions of FC on presumptions about the intellectual deficits of FC users. When part of the "common ground" of anti-FC rhetoric is that FC users are profoundly intellectually impaired—and thus that they cannot possibly be the authors of the words they produce—then FC users are thereby cut out of the conversation.

West's analysis of hate speech is not incompatible with Langton's, but details in a more specific way the mechanics of how acts of hate speech can undermine the freedom of speech of people who are experiencing oppression. West argues that there are three aspects to freedom of expression. The first is the freedom to produce and disseminate speech. But, she argues, this does not capture what is valuable about expression that we try to protect in a democracy. The freedom we are protecting with freedom of speech is not simply the freedom to have words issue from one's mouth or to write them on a piece of paper. "Freedom of expression" does not apply if what comes out of my mouth is nonsense sounds or if what I put on paper are nonsensical scribbles. Rather, it is the ideas that we convey via speech or writing that we protect as valuable (in the Millsian sense of contributing to the search for truth). Protecting the act of dissemination is only valuable if what is disseminated has meaning (West 2011, 5).

So the second aspect of freedom of expression is that one's audience takes what one produces to have meaning (West 2011, 5-8). West aptly observes that what is most likely to interfere with an audience believing that my words have meaning is their evaluation of my intelligence:

…a speaker's ability to communicate an opinion to others is conditional, among other things, on audience beliefs (tacit or otherwise) about the cognitive abilities of the speaker. If an audience believes that a speaker lacks the cognitive wherewithal to understand what [she says] then, even though the speaker can produce the appropriate words, she will be unable thereby to communicate her opinion to others. (West 2011, 22)

History is rife with examples of the meaningfulness of expression being dismissed on the grounds that the speaker lacked the cognitive ability to understand what she was saying and was therefore just "parroting." In 1772, for example, the 17-year-old, enslaved Phyllis Wheatley faced a tribunal of prominent white men, including John Hancock and the governor and lieutenant governor of Massachusetts. They were charged with determining whether she was, in fact, the author of a volume of poems or whether her owner had "put the words in her mouth." Their skepticism sprang from the commonly expressed belief of the time that black people were incapable of producing works of high art (Kliewer, et al. 2006, 165-169). Although Wheatley had the freedom to write down her words (ironically, however, only because her owner permitted her to do so), her freedom of expression was nonetheless threatened when the meaning of her words was called into question.

About 120 years later, again in Boston, 11-year-old Helen Keller faced a similar tribunal that was charged with determining if she had plagiarized a story. The question raised, reminiscent of that raised in Wheatley's case, was whether a person with significant disabilities could craft a work of fiction (Kliewer, et al. 2006, 166). Furthermore, accusations that Anne Sullivan, Keller's teacher and later companion, was actually the author of Keller's words dogged Keller throughout her life (although Keller continued to write for 30 years following Sullivan's death). Furthermore, because she used visual description in her writing, critics charged that Keller's work was "parroting" and lacked authenticity (Ozick 2003).

And, of course, there is the history of the equation of deafness with idiocy and the struggles of the Deaf community in Europe and the United States to convince the hearing world to recognize sign language as a legitimate form of communication. Deaf history provides yet another important example of how subordinated people can produce expression but find their freedom of expression undermined because the meaningfulness of their speech acts are denied by those in power (Lane 1984).

So protecting freedom of expression requires protecting one's freedom to disseminate ideas that are taken by others as having meaning. But, according to West, there is a third aspect of freedom of expression. For someone can hear or read my words, acknowledge that they have meaning, but still fail to take them into consideration. And if people fail to take my contribution to a conversation or debate into consideration, then my freedom of expression has been undermined.

As West acknowledges, the condition that people take each other's words into consideration is tricky. It is unreasonable to argue that freedom of expression is undermined unless everyone takes every belief expressed by everyone into consideration every time. Nonetheless, West argues that protecting freedom of expression requires setting at least a minimum consideration requirement on speech acts, holding that "agents refrain from acting [engaging in speech acts] in ways that systematically prevent the speech of another from being attended to or considered" (West 2011, 11).

As her example, West uses the long (and ongoing) history in the United States of pronouncements by prominent members of the medical, psychological, and educational establishment about the intellectual deficiency of black Americans. These speech acts violate the minimum consideration requirement by systematically undermining the likelihood that challenges to anti-black racism made by black people themselves are taken seriously:

It should be clear why consideration failure is of special concern when those affected are members of historically marginalized groups…consideration failure can here form part of a self-reinforcing cycle of marginalization. Many of the groups most commonly targeted by hate speech have quite literally been denied a voice in public affairs… Effecting social reform by means of rational persuasion requires that members of these groups are in a position to use speech to challenge established patterns of thought and practice. This in turn requires that their views—which are likely frequently to be unfamiliar and sometimes confrontational—stand a reasonable chance of being given some consideration by others…But the attitudes of intolerance and disrespect that underpin and sustain existing discrimination may themselves prevent the views of those disadvantaged from receiving the fair hearing required to challenge these attitudes… This cycle must somehow be interrupted if members of historically marginalized groups are to have a reasonable chance of reshaping the moral and political environment through speech. (West 2011, 26-27)

The political importance of FC as a communication tool is that it has allowed some people who were considered to be profoundly intellectually impaired—due to their inability to speak and to point accurately without support—to demonstrate their intellectual competence. This raises important issues about the socially constructed nature of the concept of intelligence and how our society uses the concept of intelligence as a tool of oppression. The point is not that a few people have been mislabeled as intellectually impaired when they are "really" not. Rather, the point is that we have an entire medical, psychological, and educational establishment built upon the notion that we can objectively categorize people on the basis of "intellect" when, in fact, there is strong evidence to doubt the objectivity of that concept and a clear history of the entanglement of that concept with oppressive conceptions of race, class, and gender (Bogdan and Taylor 1982; Mensh and Mensh 1991; Gould 1996; Lovett 1996; Borthwick and Crossley 1999; Rapley 2004; Stubblefield 2007; Stubblefield 2009).

People who are labeled as intellectually impaired experience crushing oppression within our society, rationalized by the "science" of medical, psychological, and educational orthodoxies. Exercising their freedom of expression via FC is the only way that some people experiencing this oppression can contribute to debate about the concept of intellect and about public policy that impacts people labeled as intellectually impaired (the film Wretches and Jabberers is just one recent example of FC users contributing to these debates). As I detail in the next section, much of anti-FC rhetoric systematically undermines the meaningfulness of speech produced via FC and the consideration given to the ideas produced by FC users by presuming, without substantiation, that FC users are incapable of rational expression. Thus, it functions as hate speech that contributes to the ongoing oppression of FC users and of all people labeled as intellectually impaired.

How some anti-FC expression meets the criteria to count as hate speech

An early and telling example of anti-FC rhetoric functioning as hate speech—by dismissing the words of an FC user as unworthy of consideration—occurred in 1993 in an exchange between Howard Shane (the speech-language pathologist and critic of FC featured in "Prisoners of Silence") and Anne McDonald (the FC user who had worked with Rosemary Crossley to develop FC in the 1970s). Shane had published an article asserting the invalidity of FC in a now defunct publication called Communicating Together. McDonald responded in a subsequent issue, but Shane refused to acknowledge her response. Reflecting back on that exchange, McDonald observed:

Shane claimed "Not one alleged competent user of the technique has come forward to prove the technique is genuine." (Shane, 1993a) He called [FC] "an inappropriate challenge to professional belief systems." I published an article containing the evidence I have listed here [of the validation tests she had passed]. (McDonald, 1993) In the next issue of the journal, Shane wrote "In light of my conclusions in the paper 'FC: Facilitated or "Factitious" Communication,' it would be illogical to direct a response to Anne McDonald." (Shane, 1993b: 10) This would seem a particularly effective Catch-22: the method cannot be validated unless users come forward to give evidence, and evidence presented by users cannot be entertained because the method has not yet been validated. (McDonald, Proving I Exist)

Anti-FC skepticism is rooted in the belief that people who cannot speak and cannot point effectively without support must be severely intellectually impaired. FC users' ability to use open-ended communication and to demonstrate intellectual competence challenges these preconceived notions. Anti-FC rhetoric that presumes what must be proved—the intellectual impairment of FC users—functions as hate speech because it calls into question the meaningfulness or worthiness of consideration of FC users' communication.

For example:

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. (Van Acker 2006, 10)

Or:

…general delays or deficits in language function are closely related to general delays or deficits in intellectual development. A corollary…is 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 skills (i.e., actual production is representative of "internal" speech skill)…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. (Jacobson, et al. 1995, 758)

As Borthwick and Crossley observe, statements like these beg the question. From Esquirol through Binet through the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, 1994), intellectual ability has been closely linked to speech. Advances in augmentative communication following World War II enabled some people with cerebral palsy to demonstrate normal cognitive skills despite speech impairments, raising questions about the equation of intelligence with speech facility. The development of the American concept of "learning disability" as poor performance in speech, writing, reading, or calculating despite demonstration of average or above average intelligence on other measures raised further questions about how to define intelligence. Overall, the professional response to these challenges has been to exclude some members of these groups (some people with cerebral palsy, Americans with "learning disabilities") from the category of "the intellectually impaired," rather than fundamentally questioning the category of intellectual impairment itself (Borthwick and Crossley 1999).

However, given challenges to the viability of the definition and diagnostic criteria of "intellectual impairment," including the development of FC, it is not adequate for professionals to continue to presume that they can diagnose severe or profound intellectual impairment on the basis of speech and pointing facility. Rather, it is incumbent upon those who continue to assume that people who cannot speak and point reliably must necessarily be intellectually impaired to demonstrate that this is the case:

…evidence accumulates that language is deeply rooted in the structures of the mind—in Pinker's words, a language instinct (Pinker, 1994). It is now accepted on the basis of the work with apraxia and aphasia covered by such writers as Sacks that language is both easier to damage and harder to exterminate than had been thought. The time may be approaching when the onus of proof will, as previously in the areas of deafness and physical disability, shift from those who cast doubt on the explanatory power of the concept of intellectual disability to those who wish to justify it. A beginning might be for those who believe…that there is a strong presumptive relationship between overt production and underlying ability…to set out the reasons for their belief.
Wittgenstein is reported to have asked why people had ever thought the sun went round the earth. Because, his straight man replied, it looks as if the sun went round the earth. "Really?" said Wittgenstein. "And what would it look like if the earth went round the sun?" Existing observations are similarly compatible with two directly contrary hypotheses—global mental-retardation-based language deficiency, and various combinations of specific and limited speech and executory impairments masking relatively intact language understanding or cognitive processing. (Borthwick and Crossley 1999, ¶39 and ¶41)

The assumption that all FC users are intellectually impaired, presented with no evidence other than their failure to perform well without physical support on intelligence measures that require reliable speech or pointing facility, does not serve to establish the conclusions drawn in the work that challenges the validity of FC. So assertions about the lack of intellectual competence of FC users do not serve the Millsian function of forwarding principled debate that will bring us closer to the truth. Rather, such assertions shut FC users—and former FC users who now type independently—out of the forum. For example, psychologist James Todd dismisses the work of Sue Rubin—a former FC user who now types independently—in writing about her life and accomplishments as a college student for the movie "Autism is a World":

…the general reporting on that movie, like almost all FC coverage, was credulous and gushing…CNN's Chief Medical Correspondent, Sanjay Gupta bought it—accepting, with no empirical proof at all, that the barely verbal Sue Rubin wrote "Autism is a World" using FC. (Celiberti 2010, 4)

Actually, Rubin wrote "Autism is a World" after she had moved from using FC to independent typing. More recently, she noted:

I sometimes feel as if I am the eighth wonder of the world as people stare and marvel at my irregular behaviors which lead to poor assumptions that I am simply mentally disabled with little or no intellectual functioning. My appearance is very deceptive, and day after day I am working, as an advocate for all autistic individuals, to let the world know that we are intelligent…Being looked upon as feebleminded is something I have been forced to endure my entire life. What an extremely difficult hole to have to climb out of, to fight for your own intelligence and capabilities. (Rubin 2005, 95 and 107)

In casting aspersion on FC by denigrating Rubin's abilities, ignoring her move from FC use to independent typing, and failing to take into account her independently typed writing about her experiences, Todd is performing an act of hate speech.

Furthermore, anti-FC rhetoric functions as hate speech when detractors ignore—in the face of evidence from former FC users as well as from psychologists, neurologists, and speech-language pathologists—explanations other than intellectual impairment for the unreliability of speech and pointing in FC users. Anne Donnellan, Martha Leary, David Hill, Morton Gernsbacher, Martha Herbert and others have argued for two decades that the "symptoms" of autism are most accurately explained in terms of neurological differences that impact sensory processing and motor planning (Donnellan, et al. 2010). Their research is supported by the experiences of people on the autism spectrum who initially needed support to type or write by hand but who now type or write independently (Biklen 2005, 132-143; 146-167; 187-197). Nonetheless, Todd asserts that:

The advocates of FC layer on a patina of sciencey-sounding flummery to the effect that autism is actually a motor planning defect that blocks expression rather than involving cognitive deficits that prevent normal expression in the first place. (Todd 2010, 3)

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, violates West's "minimum consideration requirement" and thus counts as hate speech.

Another way in which anti-FC expression functions as hate speech is when FC detractors assert that withholding access to FC protects the rights of people who cannot speak. For example, Kim Wombles, a self-described "instructor of English and psychology and mother to three on the autism spectrum" (http://www.science20.com/profile/kim_wombles (accessed July 17, 2011)), who blogs against FC on the site "Science 2.0," states that:

True disability rights advocates committed to the autonomy and self-determination of the disabled must come down squarely on the side of the science and decry the use of facilitated communication…They should be fiercely devoted to making sure that those without voices do not have words put in their mouths. (Wombles 2011)

Yet according to psychologist Bernard Rimland, Howard Shane has said that out of hundreds of non-speaking children he has seen over 25 years, only 3 or 4 could write meaningfully (Rimland 2005). This means that if access to FC is withheld on the grounds that we should make sure that those without voices do not have words put in their mouths, most people who cannot speak will have no chance to speak for themselves at all.

Richard Attfield, who did academic work at home at an early age using facilitated handwriting and who later communicated through pointing independently to words on a grid and then by independent typing, described his feelings when his elementary school teachers offered him picture choices as the only way they thought he could communicate:

The next day in school in an attempt to enable me to communicate, a member of staff drew some line drawings of faces on pieces of card. It was suggested that I take out a picture to show them how I was feeling. The well-meaning intention misfired. I was mortified. It was so inadequate and demeaning. I wanted communication, not picture cards. (Attfield 2005, 210)

Eugene Marcus, an FC user who passed, after a year of practicing, a test practically identical to that used in the Wheeler, et al. study3 wrote:

Today I retook the test, and I passed it, Mayer [the facilitator] says brilliantly. But I feel sad. Sad for people who can't do it and are silenced. Sad for those who will run from the depressing truth that I was right and they were wrong. Sad that I will be fighting this fight for years to come. And sad that this was even necessary. (Marcus and Shevin 1997, 132)

Anne McDonald protested vehemently over the years that those who deny the validity of FC deny the personalities of FC users and potential FC users:

These words do not exist. I do not exist. Critics of Facilitated Communication Training say that facilitated communication is factitious, and consequently that the personalities presented to the world through facilitated communication do not exist…For Howard Shane, writing off people who cannot talk is easy. For us to reply is hard, but you have to have gone for half your life without speech to understand the full horror of what he is saying…
I have listed the validation tests that I was given. I did not do those tests willingly. I was outraged at having my existence as a person called into question. I felt insulted, humiliated and demeaned by being put through test after test when I felt that I had already proved myself adequately. Even now, twenty-seven years after I established my abilities in court for what I thought would be the very last time, I still have my communication doubted by people who have never taken the trouble to inform themselves of the facts on the public record…
While there may be specific instances in which validation of specific communication may be necessary, to suggest that people only be allowed to communicate if they've passed any test any skeptic wants to push on them is not only impractical but a violation of civil liberties. Communication is not easy for people like myself, and there is nothing to gain from regulating my right to talk to whoever is prepared to take the time to listen. (McDonald, Proving I Exist)

Finally, anti-FC rhetoric functions as hate speech when its aim is to intimidate FC proponents. FC detractors routinely target specific FC supporters, calling into question their credentials and the standards of the educational institutions that hire them and the journals that publish their work. When Douglas Biklen was appointed as Dean of the School of Education at Syracuse University, FC detractors organized a protest (Rimland 2005). Todd has likened FC supporters to dope peddlers: "like drug dealers, only with Ph.D.'s and academic appointments, they pushed [FC] on desperate parents" (Todd 2010, 2). He has made disparaging comments about Margaret Bauman—"Bauman is a well-known neurologist, but has an alternate identity as an FC advocate who appeared in 'Autism is a World,' and coauthored an article of astonishing badness in Mental Retardation 'validating' FC…It is the kind of article that a functional peer-review process would have never let see ink"—and about Syracuse University chancellor Nancy Cantor—"she is perhaps the nation's highest ranking academic advocate of FC. In a 2007 speech…Cantor left no doubt about her impatience with science for generating controversy about something she says has been proven through anecdote and testimonial" (Todd 2010, 4-5).

A recent blog posted on the "Skeptic's Dictionary" website bears the inflammatory headline "Facilitated Communication Infiltrates MIT's Media Lab." The author disparages faculty affiliated with the lab, including Matthew Goodwin and Rosalind Picard, as well as Margaret Bauman and Harvard neurologist Martha Herbert (http://www.skepdic.com/skeptimedia/skeptimedia137.html accessed July 18, 2011).

In yet another recent blog, Todd asks rhetorically, "Why would a prestigious university like Syracuse tolerate, much less champion, an 'Institute' devoted to a pseudoscientific intervention that simply does not work as its proponents claim?" He also questions the credentials of Sandra McClennen, emeritus professor of Special Education at Eastern Michigan University and licensed psychologist:

Facilitated communication was one of the things McClennen espoused in her teaching while on the faculty of the Eastern Michigan University Special Education Department, and continued to espouse after her retirement when she occasionally taught a class required for Michigan Special Educators seeking what was then called the "Autism Certification Endorsement." Should we presume that her course is changed any now that it is being taught at Rutgers University? Does Rutgers care?…Why did Eastern, and now apparently Rutgers, not suggest a more conventional autism course? Academic freedom, as typically conceived, does not extend to knowingly teaching falsehoods. (Wombles and Todd 2011)

Ad hominem attacks on individuals and institutions are not legitimate contributions to principled debate. Rhetorical questions (as undergraduates are taught in introductory composition courses) do not count as arguments. The assertion that someone is knowingly teaching falsehoods, when the only basis for that claim are studies conducted over fifteen years ago that have since been challenged by respected researchers, is slander. Academic freedom protects freedom of expression in the Millsian sense of allowing for all sides to be heard in an ongoing debate: recent anti-FC blogging functions as hate speech by denigrating FC supporters and suggesting that open discussion about FC should be suppressed.

Intimidation against FC proponents and the suggestion that discussion of FC should be suppressed do not appear only in blogs, however. In a recent issue of the Brigham Young University Education and Law Journal, Gorman and associates (including Todd) argue that K-12 teachers who use FC in their classrooms and university faculty who suggest in their courses that FC is valid should be subject to educational malpractice suits. They base their case primarily on the claim that FC causes harm to disabled children and their families when false allegations of abuse occur via FC (Gorman, et al. 2011).

Fear mongering claims about FC and false sexual abuse allegations have been a staple of anti-FC rhetoric for years (for example, such concerns were raised in "Prisoners of Silence"). A review of 1096 sexual abuse allegations documented between January, 1990, and March, 1993 at the Child Abuse Referral and Evaluation (CARE) program at the State University of New York Health Science Center in Syracuse, however, found only 13 cases (1.2%) involving FC as the method by which allegations were communicated (and this number is artificially high given that Syracuse was the first region in the United States in which FC was introduced in 1990). Of these, four children had evidence of sexual abuse; two had physical findings consistent with sexual abuse; one also disclosed the allegation verbally; and in one case the perpetrator confessed. Thus, the numbers of abuse allegations made with FC as compared to other forms of communication were not unusually high, and out of 13 allegations made with the use of FC, eight were substantiated (Botash, et al. 1994).

Nonetheless, opponents of FC argue for its suppression on the grounds that the use of FC, rather than the mishandling of instances in which FC users make abuse allegations, has led to harm to children and families. For example, in a recent case in Michigan, neither school officials nor social workers verified an abuse allegation made via FC by bringing in a naïve facilitator; instead, based on the initial communication and a subsequent communication using the same facilitator, the 14-year-old girl was removed from her home and her parents were arrested. Furthermore, the police subjected the FC user's 13-year-old brother, who had been diagnosed with Asperger Syndrome, to a two-hour interrogation—with neither counsel nor a state-appointed guardian present—in which they lied by telling him that they had videotapes of his father and him raping his sister (Wisely and Brasier 2008, Ch. 1 and Ch. 2).

Sandra McClennen, who had introduced the girl to FC a few years previously, was called as a witness for the prosecution, but turned the tables on both the prosecution and the defense by calling into question the credibility of the girl in this particular instance rather than the validity of FC in general:

"She has never been very good at accurately conveying information about past events," McClennen testified about the girl. "There's, like I said, a lot of room for (the aide's) influence, and we have to constantly worry about that"…McClennen testified that she urged police, prosecutors and social workers to use a naïve facilitator to verify the claims…They all refused her advice, McClennen said. (Wisely and Brasier 2008, Ch. 4)

Nonetheless, intent on using the case to discredit FC, Todd claims that:

Worse than [the father spending 80 days in jail] was what FC led to for the girl's brother: He was secretly plucked from school and interrogated for almost two hours without benefit of counsel or child services protection, and was led to believe that he had been videotaped participating in the rape of his own sister. (Todd 2010, 7)

It is inaccurate for Todd to suggest that "FC led to" the abusive interrogation by police of the girl's brother. The blame lies at the hands of the police (who have subsequently settled with the parents for $1.8 million). Blame for mishandling of the case also lies with the school and social workers who did not bring in a naïve facilitator when advised to do so. Had a similar allegation been made verbally by a young person, we would feel it was mishandled if the allegation were not addressed by following proper procedures—including careful, non-leading questioning of the child under appropriate circumstances—before any drastic action was taken. We would not question the validity of speech as a means of communication just because the speech was responded to improperly in a particular instance. Todd's conclusion that the blame lies with the use of FC does not follow from the facts of the case.

Protecting freedom of expression

The debate over the validity of FC is fundamentally a debate about the freedom of expression of FC users. In light of the available evidence—FC users like Anne McDonald and Eugence Marcus, whose communication was validated…former FC users like Sharisa Kochmeister, Birger Sellin, Lucy Blackman, Sue Rubin, Alberto Frugone, and Jamie Burke who moved to typing independently… successful validation studies to challenge the research in which FC appeared to be invalid—ongoing questioning of the validity of FC is not merely a matter of academic interest. It is a question of the right to communicate: to have one's expression taken as meaningful and worthy of consideration.

West argues that protection of freedom of expression requires the "minimum consideration requirement": speakers should refrain from engaging in speech acts that systematically prevent the speech of another from being attended to or considered. Too much of anti-FC rhetoric violates this requirement—by calling into question the intellectual competence of FC users, cutting them out of discussions of the meaning and validity of FC, suggesting that others are more competent than them to speak for them, and attacking FC allies and their freedom of expression. In so doing, anti-FC rhetoric functions not as principled scientific debate intended to help humanity in its quest for truth, but rather as hate speech intended to silence dissenters, with the result (whether intended or not) of contributing to the ongoing marginalization and oppression within our society of people labeled as intellectually impaired.

Eugene Marcus has said it better than I, and FC detractors should listen to him (remember, ironically, that his use of FC has been validated via exactly the kind of controlled, double blind study they believe is the only acceptable form of inquiry):

Research is really useless as its own reward. The only good purpose for research is liberation from our limitations. Research designed to make those limitations more real and more legitimate must be stopped.
Great discoveries may be found in what others have overlooked. They will sometimes not recognize what they have been looking at all along. Real science takes time and experience and the ability to look critically at your own actions. That kind of science I am good at. The kind I will never be good at is the kind where one person studies another like a kind of grape or fruitfly or shell. We need allies, not people to sacrifice us on the altars of their careers. We are not something to be squeezed or swatted or listened to and dropped back on the beach. We are to be rejoiced with. We are like rare red forest demons, and so dance with us, really dance with us, or rest assured we will dance without you. (Marcus and Shevin 1997, 133)

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Endnotes

  1. Others had independently developed similar approaches to supporting communication for their students or family members (Biklen 1993, Ch. 4).


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  2. According to Rae Langton, "While many member states have implemented laws putting these principles into effect, the U.S. is an exception; its 1994 ratification was accompanied by a reservation pointing out that the requirement was incompatible with U.S. constitutional protection of speech" (Langton 2011, 4).


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  3. Wheeler, et al. was one of the early studies in which authorship by FC users was not validated.


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Copyright (c) 2011 Anna Stubblefield



Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

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ISSN: 2159-8371