Facilitation as a Kind of Care

Recently, there have emerged intense debates about Facilitated Communication (FC). Narrowly defined, FC is the process whereby an individual with a communication impairment relies on another individual’s aid in the use of a keyboard, letter board, symbol board, or tablet device with a symbolic interface. The facilitator uses his or her hand to steady the arm or hand of the communicator, making it possible for the communicator to point at a symbol or type a letter. A more expansive definition of FC would include Augmentative and Alternative Communication (AAC) and the various ways that interpreters and facilitators are employed to aid communicators who have communication impairments, which might include such diverse tactics as ascertaining eye movements, interpreting tapping fingers or feet, and discerning eye movements associated with a letter or symbol board. Parsing FC from AAC has been a tactic used to discredit individual FC practitioners while preserving the use of AAC for specific individuals. What became apparent to me during the process of writing Unraveling, a book that is expressly about communication impairments and their social affordances, is that all communication is facilitated, and that the distinctions between kinds of communication are one of degree, not kind.

In Unraveling, I argue that the opposition to FC is due to its chafing against dominant ways of thinking about communication, language, and subjectivity. (At the time of writing, the Wikipedia page for Facilitated Communication has been totally taken over by opponents of FC, which Wikipedia has abetted by putting the page in a series on Alternative and Pseudo-Medicine [which the medical anthropologist in me has some additional things to say about some other time].) Drawing on a history of understanding the subject as conveying his or her interior sense of self through the transparent, referential use of language, this view holds that only those who can speak their interior selves are full subjects. This is exemplified in Emile Benveniste’s “Subjectivity in Language” and apparent in thinkers like Judith Butler and others who see discourse as primarily, if not solely, restricted to language-use. Ableist in this assumption, the variance of non-normative speakers from socially-established norms marks some individuals as disabled — and some as more disabled than others. Such a view ignores the complex, situated, material interactions between individuals that all communication requires. It ignores how communication — and by extension subjectivity — is facilitated.

By facilitation, I mean a processural interaction between bodies; facilitation aims towards an end that only can be reached — or can be reached more immediately — through interactions between actors. In defining facilitation in that way, I’m drawing on Don Kulick and Jens Rydstrom’s Loneliness and Its Opposite, which is about the ways that caregivers aid disabled individuals in their sex lives, particularly in contexts of residential care in Denmark. In Kulick and Rydstrom’s analysis, sexual interactions between two disabled people are made possible by one or more caregivers who are able to help position bodies, put on condoms, and otherwise ensure that the disabled lovers will be successful in their interaction. Communication is not so different.

In Unraveling, I focus part of a chapter on a family — the Goddards — and their use of FC with their adult daughter, Peyton. (Peyton keeps a website here.) As Peyton and her mother recount in her memoir, I Am Intelligent, Peyton became non-verbal in her childhood, a case of what is often referred to as “regressive autism.” It was only in her early 20s, and out of desperation, that her parents turned to FC, despite having seen a television program that portrayed FC users as misguided and manipulative. Peyton’s use of FC relies on her mother or another caregiver to hold her wrist — and eventually her arm — while she uses a keyboard to type out messages. Her writing doesn’t always follow standard syntax or spelling, but her caregivers are able to discern her meaning through context and in conversation with Peyton. Aware of the criticisms of FC, Peyton’s psychiatrist devises experiments to prove that Peyton is communicating and that the facilitators are serving as a medium for her to do so.

Critics of FC often point to its inability to be replicated in laboratory conditions, which any awareness of the replication crisis in psychology would seem to trouble as a sound counter-argument. Critics also — as in the case of the Wikipedia page on FC — point to specific cases of facilitators who have been accused of abuse or whose use of FC has been discredited. The challenge to both of these criticisms is that for the many users of FC who use it to get through their everyday lives without contestation by authorities or FC deniers, there’s no benefit to showing up for a potentially hostile “experiment” to test the validity of their means of communication. In other words, the more successful users of FC might never be seen in experimental contexts precisely because those in their lives see the use of FC as successful and not in need of testing. Moreover, recent research has pointed to how scientific ideologies constrain what experimental protocols see and report, suggesting that how autism — for example — has been researched and discussed is in need of significant re-conceptualization, particularly in relation to questions around social interaction and communication. Which is all to say that FC is subject to what linguistic anthropologists refer to as “language” and “semiotic” ideologies, and is due for some critical reassessment (including reassessing the work of its critics).

Consider what happens in any communicative exchange. A speaker utters a set of noises or makes series of gestures; the speaker’s audience of one or more people register these actions and interpret them based on their tacit understandings of language within their community. The audience also works from the situation in which the act occurs in an effort to ascertain the referential content of the message. The process of communication — as symbolic interactionists and ethnomethodologists have long argued — is one of collaboration and depends not on an interior self with a transparent message conveyed through language, but rather a process through which some operable certainty can be made between communicators. Over the course of a conversation this might become easier, as a set of shared assumptions develop, but everyone has experienced communicative interactions where referents, meanings, and intents are misunderstood and lead to confusion or tension. Smoothing out communication and ignoring all of the interpretation that occurs in a communicative interaction ignores all of the facilitation that is happening between individuals — a facilitation that is working toward and end of shared understanding.

If one accepts that all communication is necessarily facilitated, what follows is that a practice like FC is not typologically different from everyday speech, the use of sign language, communication through gestures, or reading. In each case, the speaker (or author) seeks to convey some message, but that message is constructed through an interaction with the audience. The facilitator in FC is analogous to any other medium through which communication is enabled, and when communicated with, might serve as both medium and audience.

One of the consequences of this line of thinking — and one that I work on developing in Unraveling — is that rather than see subjectivity as something that arises in the individual (which can sometimes be seen as a “natural” process and one that disabled individuals are unable to undergo completely), subjectivity is a collaborative process that relies not just on language, but communicative interaction. Moreover, it is situationally dependent, is shaped by the material conditions individuals and communities are comprised through, and is based in the physiological capacities that individuals have and that are enabled through their worldly interactions with and through human and non-human others.

That might all sound a little obtuse, but consider it in Peyton Goddard’s case. In the period when she cannot communicate with language — after she loses her ability to normatively communicate in her childhood and before she adopts FC — it is not that Peyton doesn’t have experiences that shape her subjectivity. Rather, the experiences that she has during that approximately 20-year period profoundly shape her, but she is unable to communicate about them — at least not in any normatively recognized way — and they have an outsized effect on her. It’s only when she returns to language use that she is able to tame the experiences she has had, largely in collaboration with her family and caregivers, who, with her, help to encode her experiences in a shared understanding of what has happened to her over those 20 years. I am Intelligent is the result of that work.

In this way, seeing facilitation as a kind of care — and one that is end-focused and collaborative — helps to position the act of communication as a form of caring interaction. Listening, interpreting, and sharing all become integral to helping other people exist in the world as subjects who can be known and know the world and their social others. Shutting individuals out of these caring experiences — as, apparently, those who seek to discredit FC seek to do — is a violent and inhumane act. Instead, practicing careful communication and finding ways for others to communicate — normatively or not — ensures more vibrant connections between people. Ignoring this responsibility serves to maintain ableist forms of subjectivity and personhood that exclude some kinds of communicators while preserving normative kinds of subjects and persons. At its worst, this comes to naturalize certain kinds of “normal” and “pathological” human experiences and renders some individuals outside of networks of care. In Unraveling, I try and plot ways forward that acknowledge the necessity of facilitation and build animating worlds of connection and care.

(Unraveling: Remaking Personhood in a Neurodiverse Age comes out from the University of Minnesota Press in 2020.)