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.

A low tech flip book filled with simple symbols to use for communication. Borrowed from http://literacyforallinstruction.ca

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.)

The Language of Anti-Reductivism

Red Root and Running Cold — two sculptures from Nancy Bowen. Each is made of glass and metal, and loosely mimics a human body (or maybe the nervous system). See more of her work at http://nancybowenstudio.com/.

One of my ongoing projects is to develop a language of anti-reductivism. It’s a project that I share with a number of social scientists and humanities scholars, and has been motivated by the turn to molecular and neurologic explanations in the hard and clinical sciences. Biological reductionism circulates in popular media too — from narratives about the hereditary nature of certain kinds of behavior to science reporting on the discovery of “the gene” or part of the brain that causes a particular disease or set of behaviors. Biological reductionism is alluring — it promises an easy explanation for a complex problem. But anyone paying attention to the influences of society on individual behavior — including the development of research questions and the interpretation of the data produced through scientific practice — would be able to see that context is a powerful factor to consider. Reducing a complex set of behaviors to a gene or part of the brain obscures more than it reveals and serves to pathologize individuals rather than motivate changing social norms and institutions.

Wherever biological reductivism is used, individuals are pitted against dominant institutions and widespread expectations of “normal” behavior and development. One of the points I make in The Slumbering Masses (and I reiterate it all the time) is that certain arrangements of sleep are a problem, not because of their physiological effects or origins, but due to the organizations of work, school, family life, and recreation that make certain schedules (i.e. the 9-to-5 workday) the normative basis to understand human biology. In effect, an individual is made to be at fault, when it is actually the organization of society that preferentially treats some ways of sleeping as “normal” and others as pathological. The same can be said for much more than sleeping behaviors and the temporal organization of society; and re-conceptualizing bioethics might be one avenue for developing new ways to organize institutions and — just maybe — society more generally.

You can following my development of a language of anti-reductivism through a set of pieces in which I develop a couple of interrelated terms, “multibiologism” and the “biology of everyday life.” Multibiologism is my attempt to conceptualize a way to work against normative assumptions about biology, based in no small part upon a history of medicine that takes able-bodied white men as its foundation against which other kinds of bodies are compared (and pathologized). Such an approach brings together thinkers like Georges Canguilhem, Keith Wailoo, Dorothy Roberts, and Lennard Davis, drawing together the philosophy and history of medicine, critical race studies, feminist theory, and disability studies. Multibiologism accepts human physiological plasticity as based in the material reality of the world that we live in, but argues that “biology” is a discursive field that is produced through everyday action (including science & medicine). It’s this everyday action that helps to comprise the “biology of everyday life,” where toxins, diet, exercise, work, and other exposures and practices shape the body and expectations of normalcy. Which is all to say that human biology isn’t a stable or predictable thing, and that it changes over the course of a lifetime, is different between societies, and is not the same as what it was for our ancestors. Making that argument has built upon insights from a century of anthropological research (drawing on Margaret Lock and Patricia Kaufert’s work on “local biologies” and Mary Douglas’ work on disgust, especially, and extends a way of thinking that Marcel Mauss started working on in his “Notion of Body Techniques” lectures) and pairs it with the history of changing attitudes to the body (following Norbert Elias, specifically).

It was my ethnographic experiences in the sleep clinic I spent the most time in during the fieldwork for The Slumbering Masses that led me to thinking about multibiologism. I often described the clinicians I worked with there are “sociological,” in no small part due to their willingness to seek social remedies for sleep disorders (rather than resort to pharmaceuticals or surgeries). It was only when I started spending time in other sleep clinics that I began to realize how sociological they were. That they were more likely to talk to parents and educators about rearranging school expectations than they were to prescribe a sleep drug was motivated by their interests in finding long term solutions to the problems that their patients faced. It also recognized that many of their patients were “normal” in their variation from norms of consolidated nightly sleep, and that reorganizing expectations was a better — and more sustainable — solution than prescribing a drug. But it seemed to me that there needed to be language to do the kind of work they sought to do — and language that provided an ethical framework that was based on the lived realities of scientists, physicians, and patients.

(If you’re keen on following the breadcrumbs, the argument starts in the final chapter of The Slumbering Masses, moves on in ‘“Human Nature”and the Biology of Everyday Life,’ reaches its bioethical point in ‘Neurological Disorders, Affective Bioethics, and the Nervous System,’ and lays the basis for Unraveling.)

When I was finishing The Slumbering Masses — and was articulating these ideas for myself before incorporating them into the book — I began to think about what the next project would be. What I wanted to do was develop a research agenda that focused on an expression of human physiology that explicitly challenged how humans are thought about as humans. That led me to consider communication, and linguistic capacity more specifically, which neuroscientists, social scientists, and philosophers (and probably others too) still identify as the defining feature of humans (i.e. only humans have language). What about humans that didn’t speak (or at least didn’t speak in ways that were recognized as normative communication)? That led me first to thinking about the then-newish discourse of “neurodiversity,” which developed, in time, into a project that focused on families wherein a family member communicates in a non-normative way. That project eventually became Unraveling, which develops a set of terms — connectivity, facilitation, animation, and modularity — that seek to provide ways for thinking about individuals, families, communities, and institutions that strike against biologically reductive ways of conceptualizing brains and behavior.

So much of bioethical thinking reinforces reductive ways of conceptualizing the individual. But what the families at the heart of Unraveling show is that disorders of communication — and neurological disorders more generally — are disorders not strictly because of some physiological difference on the part of the individual, but because of the ordering of American society and the expectations that shape what it means to be a “normal” speaker and “neurotypical.” That might be a fairly easy point to convince most social scientists of — and maybe even many physicians — but beyond this diagnostic contribution, I wanted to provide tools for reconfiguring how we talk about what the aims of bioethical intervention are, and how we might achieve them.

It has long been apparent to me that any systemic change in the way that we conceptualize medical disorders requires alliances between social scientists and clinical practitioners. Social scientists — and anthropologists especially — often make recourse to the language of complication (“it’s complicated!” or “it’s complex!”) without having the precise analytic language to describe what those complexities are comprised of and how they make lives livable. What Unraveling seeks to do is provide that language, drawing from the histories of psychiatry and neuroscience as well as the lived experiences of individuals with “neurological disorders.” In the lead up to Unraveling being released, I’ll profile some of the ideas integral to the text — connectivity, facilitation, animation, and modularity — and how they undergird a cybernetic theory of subjectivity and affective bioethics.

Biological reductivism ultimately lets those in power off the hook. Being able to target individuals through pathologization (which supports the logic of medical intervention and undergirds expectations of “compliance”) enables institutional actors — physicians, educators, parents, administrators, managers, law enforcement agents, judges, etc. — to ignore the social contexts in which particular behaviors or ways of being in the world are accepted as disorderly. As disability studies scholars and anthropologists have been arguing for decades, changing social orders can many more lives livable. A robust language of anti-reductivism is one step in the direction of reordering society and social expectations, but there is work to be done in building supple institutions and relations to support the diverse ways that human inhabit the world.