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.

Everything I Needed to Unlearn I Learned from Sid Meier’s Civilization

I’ve been playing Sid Meier’s Civilization my whole video-game-playing life. If you don’t know it, it’s a slow strategy game that models the origins of “civilization” through the near future. Players choose a “civilization” to play (what anthropologists of an earlier era might refer to as a “culture group”) and take turns conducting research, moving units around to explore the randomly-generated board, engaging in diplomacy, waging war, and modifying the landscape to extract strategic resources. Players start by placing a settlement that will grow into a dynamic, urban, capital city over the next 6000+ years of gameplay. If that sounds boring, somehow the designers of the game have managed to overcome the implicit boringness of the premise, and made a game that can half-joking ask players when they’ve finished the game if they want to play “just one more turn” and know that many will. Which is all to say that Civilization is slightly compulsive, and I have lost many nights to playing the game into the wee hours.

The cover of the original version of Sid Meier’s Civilization from 1991. Somehow it perfectly captures a lot of what’s wrong with the game…

Civilization is almost educational. Or it would be if it didn’t fly in the face of a century of research in the social sciences (which I’ll get to briefly). I often think about having my undergraduate students play it, largely because it relies on a set of presumptions about how “civilizations” work, and what differentiates “successful” ones from those that “collapse.” As a game, it attempts to model how societies move from being small-scale, early agricultural communities with a small government to a much larger, continent-spanning, industrialized nation with a “modern” form of government (i.e. democracy, communism, or fascism). All of these are based on a player’s progress through the “tech tree,” a set of unfurling technologies that move from pottery, agriculture, and the wheel, to sanitation, nuclear power, and space flight. If that sounds like unilineal evolution, that’s because it basically is; if it doesn’t sound like unilineal evolution, it might be because that’s an unfamiliar term, which might be familiar in its assumptions.

Unilineal evolution is the idea that there are stages to social development, and societies move from a state of savagery, to barbarism, to being truly civilized. Popular in the US and Western Europe in the late 1800s, unilineal evolution was one of the underlying justifications for imperialism (the “white man’s burden” was to help all of those “half-devil half-child” “savages” move up the tech tree). As a theory, social scientists threw unilineal evolution out decades ago, pointing to the racist, colonial biases in a theory developed by a bunch of white men in the global north that posited that the features of societies in Western Europe (and, begrudgingly, the northeastern US) represented the pinnacle of civilization (secularism, representative politics, industrial capitalism, heteronormative kinship, etc.).

Over time, anthropologists and historians did a pretty good job of showing how wrong that kind of thinking is, beyond its implicit colonial racism. First, civilizations like China and Japan made it fairly clear that a society can have some of these civilizational features without having all of them, and that the development of any one of them doesn’t necessarily depend on the development of a specific preceding stage or technology (e.g. you don’t have to have polytheism before monotheism, or monotheism before secularism; or or the germ theory of disease before sanitation). And second, it became increasingly clear that the idea that societies move from “simple” to “complex” forms of institutions ignored just how complex “simple” institutions can be. What looks to be “simple” from the outside can be exceedingly complex from the inside (e.g. kinship systems in Papua New Guinea). But some form of unilineal evolution persists in Civilization, and it’s very apparent in the biases baked into the game.

Early versions of Civilization were pretty straightforward in their biases. It was difficult to win the game with anything other than a market-driven democracy, even if you were a warmonger (you’ve got to have a market system to pay for all that military R&D and unit support, after all). Over time, Civilization has become a more modular game. It used to be that adopting a government like Democracy came with a set of predetermined features, but now Democracy has a base set of rules, and players can choose from a set of “policies” that offer a variety of bonuses. In that way, you can play a Democracy that depends upon an isolationist, surveillance state or a peaceful Communist state that provides its citizens with amenities to keep them happy. Better yet, the designers chose to separate the technological and “civic” trees, so one needn’t research the wheel before democracy (which can also allow for a civilization that is scientifically invested, but ignores “civic” achievements). But one of the biases that persists is technological determinism.

It might seem silly to suggest that a society needn’t invent the wheel before inventing gunpowder, but the wheel is not a precondition for chemistry. Similarly, one needn’t understand shipbuilding to develop atomic theory. Yes, we live in a world where the wheel preceded gunpowder and shipbuilding preceded atomic theory, but on a planet with a Pangea-like mega-continent, shipbuilding would be unnecessary. Access to some bat guano, sulfur, and charcoal resulting in gunpowder isn’t so hard to imagine preceding the development of the wheel. In all cases, what actually makes a technology possible are the social demands that compel research and encourage individuals and communities to harness a technology’s usage. Hence, gunpowder’s early discovery and widespread abandonment in China or how the refrigerator got its hum. I understand why, for the sake of the game, some kind of tech tree is important, but what continues to confound me is why there are technological bottlenecks where you have to have a specific technology before you can research further technologies (and the same goes for “civics”).

A persistent feature of the game is that each of the civilizations has some set of basic benefits, which can include special units and buildings, and, in some cases, suggest that there is something intrinsic about a civilization’s relationship with geography. Canada and Russia get a bonus for being near tundra tiles; Japan gets a bonus for fighting along water tiles; etc. At its best, these kinds of rules make the game dynamic. At its worst, it fosters a kind of Jared Diamond-esque environmental determinism. (Which, again, historians and anthropologists discredited long before his Pulitzer Prize-winning Guns, Germs, and Steel — but, institutional racism is hard to overcome!) A more nuanced game might allow players to mix and match these bonuses to reflect the complex relationship between what societies value and the landscapes they have to make do with.

One other enduring problem in the game is that the designers really want to focus on the positive side of civilization. These days, Great People can be recruited to join your civilization, each of which has a positive effect (e.g. Albert Einstein gives a boost to your scientific output). But what about all the terrible “Great People” in history? What about the slave trade, on which contemporary capitalism was built? When Civilization 6 was initially released, environmental change (i.e. the Anthropocene, which is what the game is all about) wasn’t included in the game, inspiring the rumor that it was too controversial to include. Maybe including things like racism and ethnonationalism would make the game too grim; maybe the designers simply want players to provide those narratives to the game as they play it. But if any of the criticisms of my above concerns amount to “but that just isn’t realistic,” so too is the history of human civilizations without the ugly side of the nation-state and everyday politics. (As I write this, I kind of wish there was a “utopia mode” that would allow players to avoid things like fossil fuel combustion, factory farms, and the gendered division of labor, to name just three.)

This is clearly not an exhaustive list of all of the problems with Civilization. Whatever its problems, it provides a basis to rethink some of the biases in history and social science — and popular culture more generally. Working through what’s wrong with Civilization helps open up what anthropology and history have done over the 20th century to change the way that social scientists think about “civilization” and what it’s composed of and how it changes over time.

It would be amazing if Civilization 7 was more of an open sandbox, allowing players more flexibility in how they play. It would also be great if there was more of a dark side to Civilization. I don’t think Civilization drove me to become an anthropologist, but it does continue to remind me — each time I play a game — of what has gone wrong with social theory over the course of the 19th and 20th centuries, and how we might work against implicit and explicit biases in the narratives that get told in video games and elsewhere. I hope the next version of Civilization gets up to date with contemporary social science, but, in any case, I’m not going to stop playing it…