https://www.upress.umn.edu/book-division/books/unraveling

Toni Nieminen: First of all, thank you! Unraveling: Remaking Personhood in a Neurodiverse Age is a brilliant and a profound piece of work. For all of those who haven’t read it yet, I strongly advise you to do so. To hit things off, I want to ask you two questions about the form of and method behind this book. First, you largely use memoirs – written or ghostwritten by either persons living with neurological conditions or their relatives and caretakers – as your ethnographic data. This choice is an interesting and productive one. You do discuss this in the introductory chapter, however, for the readers of the blog, could you elaborate more on this choice and the implications it has had for this project? How does a memoir as a literary format work as an ethnographic data set? And how did you decide which memoirs to include?

Matthew Wolf-Meyer: Thanks Toni—I’m glad that you found Unraveling generative to work with. It was a challenging book to write, so learning that it’s helpful to people is always gratifying.

Unraveling really started as an exploration of why the capacity for “normal” modes of communication had become so foundational for the conceptualization of disability in the US in the twentieth century and its implications for clinical practice, the lives of disabled people, and social scientific theorizations of subjectivity. I had been doing fieldwork related to the project for several years, which included participant-observation in a neuroscience laboratory, a neurology clinic, a psychoanalytic training seminar, a special education school, and parent support networks. In many ways, it was very traditional fieldwork. As I started to write up that work, I found myself recurrently dissatisfied: the clinicians or neuroscientists or psychoanalysts kept appearing as a problem and the experiences of disabled people and their families served as some kind of correction. It felt very predictable in the “weapons of the weak” tradition that ethnography is sometimes drawn to, and I was very sensitive to how it reproduced ideas about power and resistance that satisfy some readers and really bother other ones (like me!). I was also increasingly troubled by my positioning myself as speaking for disabled people who were atypical communicators; it reproduced the problem I was seeking to solve. I wanted to find a way to attend to how disabled people were communicating on their own terms. So, I scrapped that version of the project.

In working through how to build the project differently, I started to read memoirs written by disabled people who were diagnosed with “neurological” disabilities or the memoirs of family members of people with “neurological” disabilities. I was especially interested in texts written by people who were atypical speakers, which ended up creating a corpus of books that were mainly focused on experiences of autism, deafness, and stroke-based aphasia. It’s an unlikely set of disabilities to put together, but as a way to get at the relationship between communication, the “neuro,” and disability, it created a big canvas. My interest in the “neuro” is why I put “neurological” in quotes above: central to what Unraveling tries to do is work against the reductionism that insists that we are our brains. It’s a weird feature of contemporary science and disability activism, where neurological reductionism serves as the basis for both a medical model of disability and the basis of neurodiversity, that is, some brains are just different and lead to behaviors that are intrinsic to an individual. Unraveling tries to tackle that biological reductionism and reconceptualize how we can imagine disability without reliance on the neurological as a source of intractable difference. In making that argument in the book, I wanted to focus on how disabilities framed as neurological have been mobilized in the US over the twentieth century and tell a story about the brain and its role in American conceptions of personhood and subjectivity.

That commitment to telling an American story led me to methodologically limiting myself to memoirs by Americans and in the twentieth and early twenty-first centuries, since I wanted to locate the project in the U.S. and focus my attention on modern neuroscience and psychiatry. In the end, there were several dozen memoirs to choose from, and they ran the gauntlet from self-published pamphlets to mass marketed literary memoirs. They covered experiences from the 1930s through the early 2000s, were pretty evenly distributed between men and women, and were overwhelmingly white and middle class. Those last elements were a problem in terms of sampling, but were useful in working through the relationship between whiteness and normalcy, particularly as they work together to uphold ideas about legitimate forms of communication. In the end, I selected a set of memoirs that mobilized a way of conceptualizing an interactive practice—and they usually had language to describe that practice. That led to pairing memoirs as parallel cases in each of the chapters and the development of the chapters into discussions of “connection,” “modularity,” “facilitation,” and “animation.”

For some anthropologists and ethnographers, Unraveling might seem like more of a literary analysis since it’s so focused on memoirs. For me, it’s much more in line with person-centered ethnography, and I treated the memoirs as if they were long-form interview transcripts. They also provided descriptions of atypical forms of communication that grew out of intense forms of family intimacy that participant-observation would have a very hard time capturing, which addressed my concerns with speaking for atypical communicators. Rather than addressing the literary elements of the text, I was interested in the text as a form of data in itself and worked to elaborate the nested theories in the texts while also situating the experiences of disabled people and their family members alongside modes of practice in American neuroscience and psychiatry. In the end, each of the chapters is organized around one of the above-mentioned ideas that is drawn out of a memoir or two and puts those ideas into dialogue with other ethnographic, archival, or theoretical work. As a whole, Unraveling builds a cybernetic model of disability, subjectivity, and personhood that each of the chapters is integral to developing, and which draws its inspiration from Gregory Bateson’s work on consciousness. It has become very hard for me to conceive of the chapters as discrete entities—they feel inexorably woven together (which may just be the effect of my having read the book so many times during the revision and copyediting process!).

Toni Nieminen: Second, by choosing to work with memoirs as your primary ethnographic data set, what are you adding to, commenting on, or reconfiguring within anthropological writing more broadly? How does this choice of data and the analysis it enables speak to your own positionality as a researcher and writer on the topic of neurological disorders?

Matthew Wolf-Meyer: In terms of positionality and ethnography, I’m not sure that I have any easy answers.

I write in Unraveling about how atypical communication and neurological disability are things that I’ve had to work through, first with my father’s experience of Alzheimer’s and memory loss and later with my son’s apraxia. But I didn’t want the book to be about them as people, nor about my experience as a son and father who would speak for my father and my son. Those kinds of accounts of disability exist and I find them unsatisfying. That might be because they falsely substitute the experience of the writer for the experience of the written about, which is a form of refusal of what Cassandra Hartblay refers to “disability expertise” and Merri Lisa Johnson and Robert McRuer refer to as “cripistemologies.” Or it might have to do with how they substitute a sample size of one for a wide swath of human experience. Or maybe it’s both! But, in any case, my experience is important to the analysis but the analysis is not of my experience, which is a critical distinction and I try and make that clear in the book. Many of the memoirs resonated with me—and that may have done some subtle work on why I selected the books that I did—but assembling them into the evidentiary body of Unraveling was very grounded and organic in that I really wanted to focus on accounts that gave language to otherwise ignored elements of communicative interaction.

In terms of ethnography as a practice and written form, I might have too much to offer in response. My early training was in literary analysis and historiography, and I came to anthropology late and only in my Ph.D. work. As a literature student, I grew increasingly tired of just reading books and treating them as representative of something. Ethnography drew me in as a way to triangulate between texts, everyday experiences, and my role as an analyst, and in the beginning I was really drawn to the ethnographic work that motivated the Birmingham school of cultural studies. When I started my Ph.D. program and had to read E.E. Evans-Pritchard’s The Nuer, I was astonished at what anthropology actually was. These days, I’m troubled by how much ethnography solely focuses on what people say in interviews and what ethnographers observe—as if there are no other forms of data available to them. If anthropology really is the study of humankind, you have to spend a lot more time watching TV, reading books, and scrolling social media—or else you’re ignoring the integral role technology has always played in human experience (which Evans-Pritchard was actually pretty good at!). Some people might object that these are phenomena of different orders and that may be true—but it’s true based on your ontological position about what phenomena are and how they can be categorized. If, in the end, you rely only on human speech, you’ve successfully cut a wide swath of people out of being part of the humankind you’re interested in studying or representing, which is either explicit or implicit ableism. Either way, it reinforces particular kinds of people and forms of expression as “normal” and others as abnormal or pathological.

Which leads me to my grumpy feelings about contemporary written ethnographies: There’s been a generic shift away from the old functionalist models of Evans-Pritchard where “kinship” and “political structure” motivate individual chapters and toward a model of ethnographic writing where each chapter has an idea based on an extant theory and each chapter feels separable from the others in the book because they don’t really build on each other. I express versions of this with some regularity, but a chapter about the Freudian uncanny next to a chapter about Foucaultian technologies of the self is theoretically impoverished—they believed in fundamentally different conceptions of subjectivity, consciousness, and power! Books should be ontologically consistent and change the way readers interact with the world. I don’t know if I accomplish this, but it’s what I strive toward. And it’s what we should all work toward as scholars. If we want to forward knowledge, there needs to be some consistency in the ontological basis of that knowledge. Otherwise, it’s just a mishmash of theoretical concepts and examples. That said, I’ve learned over time to subtly invoke my ontological commitments—which are to a Spinozist materialism—because I find their invocation to be disruptive to generic conventions and they ruffle the feathers of peer reviewers. But they’re there and motivate everything from why I do what I do to how I analyze what I’m analyzing.

Toni Nieminen: You position epiphenomenal communication in opposition to symbolically, historically, and culturally significant communication and language. You suggest that – especially in the context of neurological disorders – epiphenomenal communication can be used as a modular technology to facilitate different kinds of speakers, hearers, and interpreters, thus making space for what you call cybernetic subjects. Would you like to gloss these concepts, how and why do you use them in your book? Further, could you say more about the possibilities for facilitating cybernetic subjects in institutional settings that privilege – and in many ways gain from privileging – certain kinds of (neoliberal, normative) subjects?

Matthew Wolf-Meyer: You’re right to focus on epiphenomenal communication as the heart of the text. It’s my attempt to offer a corrective to the idea that communication is always embedded in a continuous and transparent, individualized subjectivity. In the US (at least), the dominant assumption is that what we communicate is based on a version of the self that is consistent over time and that how we communicate is with language that is straightforwardly interpretable to an audience. So, when I ask my partner what she wants for dinner tonight, what and how she answers is indebted to a version of her self and culinary desires that are continuous and transparent—and that I’m intimate with. If she says “pasta” or “tacos,” I know that there is a subset of both of those categories that is meaningful to her (and to us as a family): serving her pasta con le sarde or carne asada tacos would be upsetting to everyone involved and would be a betrayal of both her history of desire and her present expectations.

For the most part, assumptions about continuity and transparency are just fine in our everyday lives, but when you’re living with someone who doesn’t communicate in those ways—say a toddler who is new to speech or a person with dementia for whom language is not as referential as it once was or a disabled person who communicates atypically—you can’t rely on interpersonal history or the conventions of interpretation to do the heavy lifting of communication. Instead, you need a practice that attends to needs and desires in the present, which communicative interactions provide a window onto. My call for epiphenomenal modes of communication is meant to draw attention to that and to how our interpretive labor is always working through what we know about the past of a person and what they need in the present.

Language is a technology, and like other technologies, it obscures a wide variety of labor through its efficiency. When we obscure all of the labor that is embedded in language, we run the risk of naturalizing language as a necessary feature of communication. But attention to nonhumans shows how diverse communication can be. And attention to varieties of human communication—including gestural forms—demonstrates how unnecessary spoken and written language are to subjectivity. Focusing on disability experiences of communication opens up what communication can be—and is a challenge to anthropology’s reliance on speech as a transparent medium of communication and semiotics as a unproblematically isomorphic mode of referentiality.

Displacing the naturalness of language as the basis of subjectivity and personhood also serves to describe subjectivity and personhood in more complex ways. Anthropologists from Marriott McKim to Marilyn Strathern to E. Valentine Daniels have been invested in the idea of the “dividual,” or the necessary interdependence of personhood on connections between bodies, which American forms of individualism obscures. Similarly, disability studies scholars like Mia Mingus and Alison Kafer have long drawn attention to how interdependence is a better description of how human sociality works—rather than the rugged independence that underlies American ableism. Unraveling tries to describe how dividualism and interdependence work as the foundation for communication, and reliance on ideologies of transparent communication of the self tend to obscure this. Cybernetic subjects—and I’m really indebted to Bateson on this front—are comprised of (at least) processes of connection, modularity, facilitation, and animation as described by the memoir writers who make up the spine of Unraveling. Focusing on those processes provides ways to describe how subjectivity and personhood are made through ongoing interactions between people, between people and institutions, and between people and their environments.

My hope—and this is the kernel at the heart of my critique of value and discourses around “quality of life” in Unraveling—is that drawing attention to the processual aspects of subjectivity and personhood serve to disrupt the dominance of neoliberal models of subjectivity that rely on the individual as a discrete individual. It’s wild to me how many anthropologists want to critique neoliberalism and then fall back on the individual as the base unit of analysis—and as the base unit of interpretation through a reliance on self-representation through speech acts. It’s also wild to me how many people want to critique capitalism and yet rely on “value” in their analysis: we have to find ways out of capitalist imaginaries and their compulsory terminology. That doesn’t mean foregoing critiques of capitalism, but finding means of critique that actively help to build new imaginaries that are inclusive and sensitive to the needs of others.

In the heat of postmodernism, polyvocality was a key interest, but we seem to have lost that. One way to regain it—and use it as a means to unsettle the dominance of neoliberalism in our imaginations—is to adopt methodologies that disrupt the univocity of the subject, both the people who make up our evidentiary cases and our interpretive roles as social scientists. Incorporating disability expertise is one way of doing this, which treats disabled people as theorists. Participatory and community-led models of research do similar work. On some level, resisting the individual as the unit of analysis—and neoliberalism as a cultural dominant—depends on a willingness to be uncomfortable and to make other people uncomfortable, and too few scholars are willing to do this. Unraveling is purposefully disturbing. If a reader gets through it without being disturbed, I’ve done something wrong!

Toni Nieminen: You seem to suggest that facilitation – one of your core concepts – as an interactional and ethical practice builds on epiphenomenal communication on the one hand, and a kind of future oriented collaborative effort on the other hand. I might be wrong here, however, this seems to contain a tension: how is communication to draw both on immediate meaning-making in the present whilst also anticipating a kind of publicly shared modular futurity, without producing dysfunctionally functional webs of communication, as you call them? Put in other terms, how are we to scale up your analysis of epiphenomenal and modular communication beyond the interactional event?

Matthew Wolf-Meyer: This is thorny, but I’m not sure that we should scale up past the interactional event of communication. Or, if we do so, we need to know that that’s what we’re doing and what the dangers are.

One of my influences in the book—and really, in life—is Mony Elkaïm, who was a family systems therapist that was heavily influenced by Bateson. Elkaïm was of the view that most families are dysfunctional, but also that most families find that dysfunction to be functional: dysfunction serves a purpose and part of kinship is finding people whose assumptions about the world complement your own. Dysfunction can be a problem when it leads to actual harm, but for the most part, some dysfunction serves as a motor to human relations. To describe how dysfunction works, Elkaïm makes a distinction between “worldview” and “official program,” which are the difference between desire and need. Sometimes, desire and need are isomorphic; but, sometimes, they directly contradict one another, which is what Bateson described as the basis of schizogenesis, that is, meeting one contradicts meeting the other, and as a result, I’m trapped in either betraying stated desires or working against needs. For Elkaïm, surfacing the latent needs and desires of a dysfunctional family system is the work of family therapy, and is necessarily a historical project: only by knowing the history of needs and desires in a family can that surfacing work be accomplished.

I say all of that because there are times when history and continuity are important to address, but it is often the case that most communication is a response to present conditions and bringing in historical understandings of an interactional partner might just confuse things or obscure possibilities. When my younger son says he wants to watch something, I could put on the latest episode of the last cartoon he watched, but I could also allow him to express his desire by picking something new. When we only fall back on what we think we know about a person, we limit the possibilities of their desire.

The future is a collaborative act. On the micro level, epiphenomenal communication is about building a shared future between participants: we build a future to inhabit through our communication of desires and needs and the ways that those desires and needs are responded to as the basis of a shared animation. And we can scale up from there, to how we build our kinship, to how we build and interact with institutions, and to how we sustain and change our environments. When we moor our desires and needs to history, we limit the possibilities for the future—which is one of the reasons why I’m drawn to speculative fiction, which many anthropologists are. We have to find ways to be open to new desires and needs, which is about how we theorize the subject, how we make research projects, and where we seek to intervene (and how) in dominant theories.

Scaling up beyond the interactional event has a lot at stake, and what’s needed is a commitment to articulating the various needs and desires that are at play. Family systems therapy provides one model to do this kind of deliberative work, which both acknowledges the past while also seeking to articulate a livable future. But it depends on a commitment to participation and building something new, which, again, can be really uncomfortable. And we need to be committed to being uncomfortable if we’re going to build more inclusive futures. I know that’s pretty far from addressing atypical forms of communication, but it’s all part of the same project: if we want to build more inclusive futures, we need to address the forms of ableism that foreclose specific people from participation in society as full persons. We need new ways of collaborating.

Toni Nieminen: Finally, as Unraveling was published in 2020, what have you been working on lately and in what kind of ways does the work build on the thinking behind Unraveling?

Matthew Wolf-Meyer: Unraveling came out six months into the COVID-19 pandemic, and it really felt like it was a book out of time and place—there were just more immediate things to worry about. Maybe Unraveling’s time and place is returning for better and worse, since it feels like we’re returning to an old, exclusionary “normal” rather than having built a more inclusive one in the interim that the pandemic provided us in 2020-2022. As I tried to bend the lessons from Unraveling into more immediate applicability, I put together an edited volume called Proposals for a Caring Economy, which I hope comes out sometime soon. It has chapters from a wide variety of people who are working with ideas of connection, modularity, facilitation, and animation as they apply to the arts, agriculture, immigration, and more—all to demonstrate how the ideas in Unraveling are applicable outside of disability experiences.

And then I started working with Denielle Elliott on a book that comes out next year called Naked Fieldnotes, which is pretty much what it seems like it should be: a huge compendium of ethnographers’ fieldnotes and contextualizing essays, which makes apparent how ethnographers do the work they do.

The big thing is a new book called American Disgust: Racism, Microbial Medicine, and the Colony Within, which comes out in spring 2024. It was a backburner project for several years, which started with a little project on fecal microbial transplants, and then developed into this sprawling project about American dietary recommendations, racism, the use of biologics in medicine, and how settler-colonialism informs American disgust. It ends with the recent rise of fecal microbial transplants in the US and contextualizes the resistance to their use in the US as based in longstanding ideas about bodies and contamination that has motivated people like John Harvey Kellogg and is apparent in things like the inclusion of yogurt into American diets.

A lot of the last three years has been spent supporting my partner and kids—first through the early days of the pandemic and then during a year abroad in Finland as a fellow at Tampere University’s Institute for Advanced Study—and I’m kind of surprised that I’ve gotten anything done. It was really due to working with other people—either in collaborations or peer pressure—that anything got done, which has also been a great way to work against the individualization of academic labor conditions. Someone recently suggested that I should work on a project about historically important collaborations and at the time I dismissed the possibility—but I increasingly think I just might. But before that I need to finish a book called Living Technologies: Designs for the Biology of Everyday Life, which is an attempt to build social theory through bodily processes (like the dormancy of sleep) to disrupt biological deterministic ways of thinking about people and their capacities. It’s been a slowly simmering project and just needs to be put into the world, particularly because it seems like we’re constantly confronting revanchist forms of determinism that skirt—if not outright embrace—racism, sexism, and ableism in the worst ways.

In writing all that out in the context of revisiting Unraveling, you get a pretty good sense of where I’m coming from: I have some real frustration with where we’ve been as anthropologists and socially (especially in the US), but real hope that things can be different. And part of the role of the social sciences isn’t just diagnostic, but utopian. If we want a better world, we need to help build it.