Transcript

[00:00 Podington Bear—All the Colors in the World plays]

Sharon Jacobs (SJ) [00:08]: Hello and welcome back to AnthroPod. We’re coming back from hiatus with an entry in our series AnthroBites, designed to make anthropology more digestible. Each AnthroBites episode tackles a key concept, text, or theme, and breaks it down into manageable, bite-sized chunks.

[00:28] My name is Sharon Jacobs, and I’m your host today. Our guest, Dr. Arseli Dokumaci, is Assistant Professor of Communication Studies at Concordia University, Canada Research Chair in Critical Disability Studies and Media Technologies, and Director of the Access in the Making Lab. Dr. Dokumaci is also the author of the book Activist Affordances: How Disabled People Improvise More Habitable Worlds, which was published last year (2023) by Duke University Press. She’s an ethnographer who works with video and other visual methods to explore questions of disability, access, and environmental issues.

[01:08] Our conversation in this episode focuses on disability. We discuss Dr. Dokumaci’s recent book, and we talk about what the concept of disability can bring to anthropology and other disciplines as a framework for thinking and doing ethnography.

SJ [01:25]: The first thing I wanted to ask you is, what is disability? What does it mean to you, maybe, how has it been conceptualized in the academy?

Arseli Dokumaci (AD) [1:36]: First thank you for having me here, it’s really a pleasure to be talking to you. I am speaking to you from the unceded lands of the Kanien'kéha Nation, where I am looking into beautiful rivers and trees and breathing the air and drinking the water that Kanien'kéha Nation and other indigenous peoples have taken care of.

[01:58] Like any other category, disability also depends on who is defining it and for what purposes. So, for instance, if you think about, like, identity-based movements, disability would be one thing, and if you look into government documents, welfare programs, insurance companies, et cetera—which are basically targeted towards limiting the definition of disability—then disability will become another thing. And not only that, these conditions themselves also change depending on which particular history are we talking about, which geography or cultural location, and also which language are we talking about.

[02:38] All that to say that, if you think about what disability is—just as any other category, it’s very complex, it’s situated, and it’s fluctuating. It’s somewhat ambiguous.

[02:51] And what are the ways to attend to those complexities around disability, or how to define disability? I see at least two ways. And one of them is to do genealogical analysis—like, where is this category coming from, who is defining it, what are the conditions of possibility that lets that particular definition of disability materialize. And I’m thinking of, for instance, Matthew Kohrman’s work, where he is looking into the emergence of the disability category in modern China. Or, from critical disability studies, I’m thinking of Snyder and Mitchell’s work on the emergence of the disability category in, let’s say, eugenic practices.

[03:35] And another way to attend to the, let’s say, indeterminable nature of disability, is to take disability as a lens, as a framework, or as “methodology,” as Julie Minich puts it. And I’m interested in that possibility in my own work. So, rather than looking into what disability is or is not, I’m more interested in how can we think of disability as a binding framework among, let’s say, a variety of experiences, situations, and processes, embodiments, et cetera—which may or may not involve disability or impairment. Which may or may not be experienced by humans. And which, you know, again, may or may not be recognized as disability at all. But in the end, which still carry the attributes of disability. And I—in my book Activist Affordances, I am proposing the concept of “shrinkage” to attend to this particular commonality of experiences.

[04:43] What I mean by shrinkage is that the environment in which you live in and its available affordances—which are basically action possibilities—they are shrinking, they are narrowing down. So the environment in which you live in becomes less and less available for you, less and less habitable for you. And, you know, shrinkage could be happening to a disabled body who is living in pain, and your whole environment shrinks—sometimes just the confines of your bed, because you’re in so much pain that you cannot get out of the bed. Or think of a person who’s depressed and cannot, again, get out of their room—and then your living environment literally shrinks to the confines of that room. Just think about the pandemic times, where, you know, populations had to go into lockdown—people at a mass scale experienced shrinkage.

[05:36] So, again, shrinkage is something that I’m proposing to be able to articulate this commonality of experience and develop a common language that can help us to work with each other and recognize each other’s experiences.

SJ [05:50]: Yeah, that sounds like shrinkage is a really fascinating example of what it means to use disability as a lens to understand, not even specifically disabled worlds, but the world that everybody lives in, human and nonhuman. And we’re going to touch on what disability means for ethnography a little bit later in the interview, but before we get there I want to ask you a little bit about the history of critical disability studies, and what this, and maybe even other cross disciplinary paradigms, can bring to anthropology and to the academic study of disability.

AD [06:30]: Well thank you for the question. So one of the ways in which I see the contributions of disability is really questions around method and questions around reciprocity and accountability. And I’m mentioning this because I’m particularly thinking of how the field of critical disability studies emerged. It has its roots in disability activism—like, actual lived experiences of disability—where we have the mantra of, like, “nothing about us without us,” that is grounding the field.

[07:05] So, if you stay with that mantra, it has its implications for ethnographic work. How are you working with your participants? Are they brought into the research in more meaningful ways, that their experiences are credited and they have a say on how the research is being framed? And, also, in the end of the fieldwork—if you think it ever has to end—what is your accountability towards your participants, toward the field? What are you bringing back? So, I think working with disability issues asks us to be very aware of such questions. How do we apply the framework of “nothing about us without us” in our own work, as ethnographers, when we work with disability communities?

[07:53] And a second point of contribution would be—and this is something that has been criticized in anthropology for a while, you know—questioning the unmarked, free-floating body of this ideal ethnographer/anthropologist who can go into distant field sites where it is all available to this person. This has been criticized by disabled ethnographers already—like, I’m thinking of Devva Kasnitz’s work, Russell Shuttleworth’s work, as well as others like Rayna Rapp and Faye Ginsburg.

[08:27] When you live with disability—as either you, yourself, or people around you—you cannot take anything for granted. Neither your own body, nor your own capacities, your own resources around yourself. Speaking from my own experiences, where I live with a painful inflammatory disease—for instance, I have flare-ups in the mornings, and that means that I can’t do fieldwork and do participant observation during the morning time. And it has implications on when I can meet with people. I’m thinking of taking field notes—like, writing could become very difficult for me if I have inflamed fingers that day. So, all this is to say that you cannot even take for granted even the main tools of ethnography, like note-taking, going to the field, and observing. You have to work within the limits of living with disability, whatever those limits are.

[09:26] The fact that you cannot take for granted neither your own body or the field gives you a kind of consciousness, a critical awareness, where you can actually begin to dismantle that unmarked body of the ideal anthropologist, who’s basically able-bodied, cis [cisgender], male, and white, going to these distant fields. This critical awareness helps you to also bring down this myth of the field, right—what’s, what do we mean by the field? Like, is there really a distinction between your field and your own life? Like, is there a distinction between research and everyday life? The fact of living with disability, which really anchors you to your grounded realities, helps you to also dismantle those myths. You don’t have the luxury to separate—Okay, this is my research, and this is my field, this is my academic inquiry, and apart from that I have my everyday life, where I sleep, you know, cook, whatever, be with my kids. You don’t have that luxury when you think about, like, living with disability.

[10:39] And, again, here I would even push it and say that—not just disability—let’s think about it again as shrinkage. Because you may not have any impairment to begin with, but you can still experience shrinkage, because you’re racialized, or you’re gendered, you’re a mother, you have to take care of your kids.

[10:58] So when you experience shrinkage, you as an ethnographer cannot take for granted access to the field. Access itself becomes problematized in a way that could also be generative. Because when access is taken for granted, that you can just fly over to spaces, that the world is there for you to just extract knowledge from it—which has happened in the history of anthropology. And maybe in some cases access was never meant to happen, maybe access was unwarranted. Maybe you are not meant to go there and maybe you are not welcome. I’m thinking of histories of anthropological work, and how it was reaching into indigenous lives and lands. So, there could be entry points to thinking critically about access to the field through the lens of disability as a methodology and a framework and thinking of shrinkage.

SJ [11:55]: Mmm, and I think this question of where the field ends and quote-unquote “real life” begins is so important for any anthropologist. In your book Activist Affordances you talk about what it means to be an actor or an activist in a way that’s somewhat different from, perhaps, people’s typical conceptualization of disability activism. So I want to ask you a little bit about what a disability activist means for you, what might be different ways of being a disability activist, and how your work contributes to the question of disability justice.

AD [12:39]: Well you know when look at activism as traditionally understood—like, going to the streets, asking for big-scale changes, and, like, legislation, et cetera—the labor of that activism, its bodily cost and the effort, the time it takes, that spaces of activism could be very inaccessible, et cetera, have all been, you know, criticized by disability justice activists, as well as disability scholars. I’m thinking of Susan Wendell, where she wrote Unhealthy Disabled, like how as a woman living with chronic illness and disability she was unable to take part in feminist activism. In some ways, traditional activism is taking the body of the activist for granted, as if this body has endless resources, time, and energy that could be channeled to activism. So that has been criticized already, and new ways of doing activism have proliferated as well, especially thinking of how social media is being used currently. Thinking about Alice Wong, on disability and visibility.

[13:46] What I’m also interested in, in addition to that, is like, okay, we can look for new ways of doing activism, but at the same time, we can also rethink what we actually mean by “activism.” Like, does activism mean asking for legislative change, big macro changes, or can activism also be thought of like creating more livable worlds? And if we think about activism in the sense that it is a way of world-building, then we can begin to recognize that activism actually takes place in many other locations. It can be done by different actors, whether they are identified as being activists or not.

[14:30] So this is what I’m trying to do in my own work and in the book Activist Affordances. As the book shows, with so many ethnographic snippets of people who are basically developing all these kinds of very micro, like almost unnoticeable, very tiny, but at the same time very important and very ingenious and generative ways of living the everyday, just surviving the everyday. How you are basically preparing your food by, perhaps, developing a new kind of choreography around moving in your kitchen. If we think about, again, activism as a way of world-making, then these very micro acts, very humble acts of survival, also become like a form of activism.

[15:20] And I also want to show that in these moments of making lives more livable for ourselves, we are also, without realizing, making life more livable for others, too. Because when I look at another disabled person’s activist affordance, I can recognize myself in that moment. And in that moment of recognition, I see a sociality. I see the sociality of creating more livable worlds together, even if we are not necessarily doing it in conjunction or taking up the streets.

[15:55] And that, to me, is an important entry point to think about activism differently, so that these acts—no matter how small, and no matter how tiny, happening on the corners of everyday life, that nobody ever pays attention to—do not remain as such. They get the attention they deserve. They get to be recognized for all the world-making activities that they are. Because they are moments of world-making. And creating the world that we were not readily given.

SJ [16:26]: Thanks so much, and I think—especially, this point really makes me think about Covid, actually—about, sort of, the isolation and sociability that really affected all of us quite recently and, sort of, make us think about what it means to be an actor in a social world and try to make change.

[16:45] The last thing that I want to ask you before we close out today is, where do you see the study of disability heading? And what are maybe some topics or approaches that you would really like to see students or other researchers pick up on?

AD [17:03]: Disability studies beyond disability, I would say. Disability studies beyond disability, in whatever way we define disability. This is the kind of direction I would see disability studies going towards, and I’m here really thinking about this brilliant quote from Alison Kafer. Kafer is basically going back to disability historian Douglas Baynton who said that, once we look into this history, we come across disability in many places. And then Kafer reverses Douglas Baynton’s quote and says, what about in the other places that we do not recognize disability, that we do not see disability? Or, what might be situations of disability, even if there is no impairment involved?

[17:53] This is something I’ve been talking about with the idea of shrinkage. And this could be the opening for thinking disability, as I conclude in my book, beyond the human, beyond the questions of the peripheries of the disabled body—thinking about the disablement of the entire Earth, thinking of the disablement of and shrinkage of the livable worlds for other entities than the human. Like, the trees that are being, you know, exposed to various forms of extractivist violence, the waters that are being polluted, that their livability is also shrinking.

[18:30] So how can we build coalitions among these different situations of shrinkage? This is where I see, at least, the kind of disability studies that I would like, myself, to be doing and my students to be pushing more towards.

[18:46] And this is also what we are doing at the Access in the Making Lab, which is where I work and direct. Thinking of disability in more broader terms, more intersectional terms, and building coalitions around issues of environmental justice, climate catastrophe, issues around access to lands, waters, clean air, and the like.

[19:09] So this is where I would like to see more towards disability studies in the future. Which is disability studies beyond disability, in whatever way we define it.

SJ [19:17]: Great, thank you so much. That’s a great way to end that really speaks to people in such diverse fields. So thank you for that.

AD [19:25]: Thank you so much, Sharon, for having me here.

SJ [19:28]: That was Dr. Arseli Dokumaci, talking us through disability, ethnography, and her recent book Activist Affordances from Duke University Press. You’ve been listening to AnthroPod, from the Society for Cultural Anthropology. AnthroPod is produced by a collaborative and nonhierarchical collective of Contributing Editors. We’ve been hard at work on a host of episodes that you’ll be hearing in the next few months, with topics including astro-colonialism and the anthropology of algorithms.

[20:00] This AnthroBites episode was produced by me, Sharon Jacobs, with review provided by Joyce Rivera-Gonzalez and Clara Beccaro-Lannes. Special thanks to Kim Fernandes for contributing research and producing a Teaching Tools post that accompanies this episode. You can find that post, as well as other supporting materials about disability and anthropology, in the show notes for this episode. Find us at culanth.org—that’s c-u-l-a-n-t-h-dot-org. ’Til next time!

[20:30 Podington Bear—All the Colors in the World]