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Arseli Dokumaci, "Activist Affordances: How Disabled People Improvise More Habitable Worlds" (Duke UP, 2023)
01:14:38
An interview with Arseli Dokumaci
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C
Welcome to the New Books Network.
- [01:33]
D
Hi, welcome to New Books Network. My name is Clayton Gerard. My pronouns are he, him, and Today I am here with Dr. Arsali Dakumache, author of Activist How Disabled People Improvise More Habitable Worlds for people who are living with disability, including various forms of chronic diseases, chronic pain, daily tasks like lifting a glass of water or taking off clothes can be difficult, if not impossible. In Activist Affordances, Arsui Dakamache draws on ethnographic work with differently disabled people whose ingenuity, labor, and artfulness allow them to achieve these seemingly simple tasks. Dakamache shows how they use improvisation to imagine and bring into being more habitable worlds through the smallest of actions and the most fleeting of moments, what she calls activist affordances. Even as an environment shrinks to a set of constraints rather than opportunities, the improvisatory space of performance opens up to allow disabled people to imagine that same environment. Otherwise, Documente shows how disabled people activist affordances present the potential potential for a more livable and accessible world for all of us. So thank you so much for being here with me today. Dr. Dakumache, I wonder if you'd begin the interview by telling us a little bit about yourself.
- [03:03]
C
Sure. First, thank you so much for inviting me, Clayton. It's a real pleasure to be here talk to be talking to you. So I really appreciate. Oh, thank you. I really appreciate the invitation. So my name is Arsi Lee. My pronouns are she, hers, and I was born and raised in Turkey, did most of my higher education in Turkey and then moved around a little bit. I went to north of Wales to a town called Aberyswitz, and I did my PhD there. And then I now ended up in Georgia, also known as Montreal. And as an immigrant settler, I'm living on these lands that have been taken care of by the guinea and Gahaga nation, Anishinaabeg and other indigenous peoples and nations. And I'm very grateful to be looking to this beautiful all blue sky and green trees and having access to water and clean air. And I'm really deeply grateful for that. In terms of my institutional affiliations, I'm an assistant professor at Concordia University in Georgia and I am a Canada Research Chair in Critical Disability Studies and Media Technologies. And I'm the director of the Access in the Making Lab, which is a collective of artists, scholars, researchers, activists who are working on issues of disability, access, environment and care, and mainly through experimental and research creation approaches. So shout out to the Access in the Making Lab. You can go and check out our website, accessinthemakinglab.ca yeah, that's basically me in a nutshell.
- [05:03]
D
Awesome. Thank you for that introduction. And I will also add to the plug of the Accessibility in the Making Lab. I have been scrolling through the website quite a few times lately and that has been really exciting to get acquainted with that kind of work. So thank you for that work.
- [05:20]
C
Oh, thank you. That's wonderful to hear. Thank you.
- [05:24]
D
Yeah. So I just wanted to start off and say that I found your book to be extremely fascinating and exciting to read. You have introduced me to a new way of conceptualizing about disability theories and making sense of of my own experience as well as well as those around me. Rheumatoid arthritis is one topic that you speak to quite a bit in the book, and that's something that runs through my family. So a lot of the things that you speak to and describe in the book I've seen firsthand with people that I'm close with. So I just want to say that I've really appreciated that and the work that you're doing. To start off this conversation. Could you tell us a little bit about how the book came about for you?
- [06:11]
C
Sure. And thank you for those kind words, Clayton. And actually listening to you, how much you could, you know, find connections to the book really means a lot to me to hear that because that's part of the. Not part of the, but the main reason why I wrote the book having lived with, you know, I have been living with chronic. This chronic illness known as rheumatoid arthritis since about like my like 13, 14, so early teenage years. So that's quite a bit of a lifetime to spend with a chronic illness. And I wanted to kind of tell my story in this book also by doing that research. But I mainly wanted to actually find, you know, kind of try to find myself in other stories who are living through similar situations, similar disabilities, or even if not similar finding yourself in similar situations of being constrained and how you deal with those. So it was almost like a quest for looking for others, trying to see yourself in others and find yourself in others, and by way of doing that, let others, such as yourself and any other future reader find themselves in these stories as well. So in a way, like it was a kind of quest for finding a community that was not there yet through telling your story, through finding yourself in other disabled people's stories and letting it that out into the world so others can find themselves in them. Kind of like this desire for creating a community that didn't know of each other's existence or their way of being in the world before. And by that I mean there's a. And that's the main focus of activist affordances. This way of being in the world, which I'm thinking of as like continuous improvisation, is very, is very extraordinary in the sense that because you're living in an environment as a chronically ill disabled person that is full of constraints, then you have no option but to be continuously creative. Like, whether you want it or not, you have no option to find ways. So you end up being a continuous like full time creator even in the most kind of this most, you know, ordinary, even the most boring of actions, let's call it that way. Like how do you put on a shoe? How do you open a, I don't know, a jar or how do you put on a shirt? So just these things that we continues to do in the everyday becomes this turns into this like, like a creative scene, like a theater scene, where you're continuously like, okay, this is not gonna work. I have to find a new way. So that continuous experimentation and finding your own Ways of living through the everyday is a story that I wanted to tell about myself, about others who are finding themselves in these situations of shrunken environments and continuously creating within those shrunken worlds some way of surviving, some way of going through there every day. And this as an invitation for others to tell that, you know, disabled living, no matter how bad it might sound to a non disabled person, is actually livable. It's actually possible. I mean, sometimes even like you can thrive in that world against all odds. So that kind of that story, the continuous creation within constraints, is what I wanted to kind of find out in others and let others see in each other.
- [10:28]
D
Thank you for sharing that. It really shines through in the book. And I also just to ground our discussion, I would love to ask some more introductory questions, but you provide such rich theoretical book in the theoretical work in the book as well that I want to be able to highlight that in addition to the kind of cataloging of these activist affordances that you affordances that you provide. So. So just as we're getting started in this conversation about your book, could you explain what you define activists and affordances as?
- [11:08]
C
Yes. Well, thank you so much. Well, I guess let's start with affordances. I would. You know, this is such a ubiquitous term now. Like, you see it everywhere. Like, you know, from let's say in media studies and design studies, in human computer interaction. Like, it's a term that is popping up everywhere. The way I kind of engage with it is like where it originated was basically in an ecological theorization in ecological psychology. And I would think of affordances in the way it was theorized by James Gibson, which he basically says, like, affordances are like these action possibilities that emerge from the mutuality of organism, environment relations. Like whatever I have in terms of myself as my bodily properties as well as my desires, dispositions, etc. The moment they have an encounter with the environment, and the environment has particular properties, etc. And they're coming together in a particular way creates the affordance. So that was the original conception of the affordance idea by James Gibson. I took that, but I kind of made something else with it because this was not in the original conception. And that's where activism comes in. So it's not affordances, it's activist affordances. And then if you ask me what I mean by activism, which is again a term that is like, understood in so many different ways in the way I approach activism, is I consider it as a way of world making that is emerging out of necessity. So that's the way I think of activism. You're making worlds and you're making those worlds. Not because you just want to make worlds, just because of like, hey, I feel like it. Hey, why not like, because I like it that way. Which could also be the case. But here in the case of like activist affordances, you have to make world worlds that you can find a way of living in it somehow because the current world, as is in the way it is configured and put in front of you, is not giving you kind of a livable environment where you can survive and thrive. So this, this necessity to create out of lot of constraints is like what is at the heart of like how I see activism and when they are brought together, like this idea of affordance and then activism in the way I just like articulated this is pointing at what disabled people are in the way I'm thinking of it doing in the everyday, which is creating this action possibilities that are not out there existing in a material form or that is, that has been put into an object form or a technology form or infrastructure form, also social structure form. And then you are creating that non existent affordance through this world making impulse. So you're creating livable worlds that will reciprocate your access needs, the roles that are not yet existing right now, but in the future that they might come. So that is the idea behind my merging of the term activism and affordances and how I conceive of the two.
- [15:05]
D
Awesome. I'd like to dive in a little deeper into this creative aspect of activist affordances. You use performance as a central part of your theorizing of activist affordances. You say disabled people make up and make real action possibilities as if those missing world counterparts were present. Can you tell us about how you use performance to describe these ingenious ways of living and creating?
- [15:39]
C
Of course. So I mean, part of that is also coming from my, you know, having work in performance studies and thinking alongside performance studies scholars like Mike Pearson, Diana Taylor, Ellen Reed and others. And the main idea of performance is that it is in my understanding of it, or in my conceptualization of it, or in the way I mobilize performance in this book. It's a way of world making, but it is much more capacious than in the way that we think of world making as literal world making. So there are many ways to make worlds or build worlds. You can go and literally build worlds. You could be an engineer, you can be a knowledge maker, you can be an architect, you can be, you name it, you know, you're Building something there that exists in the world. Or you can be, you know, another way of world working is like you can be an artist and you, you create something with your art and another way of imagining the world, and then your art becomes a way of world making. Think about novelists, you're an author, you're creating this imaginary world that's another way of world making. But the particularity of performance in comparison to these multiple ways of world making is that it is both ephemeral. You know, performance, it just happens, it's happening in the action, but it also has the power to stay, you know, it can accumulate. It can accumulate in the body, it can accumulate in the environment. It has that staying power as also performance theories, as talked about it. And that to me is the kind of the broader possibilities that performance affords to do literature in like maker cultures or world making literature, whatever you want to call it. And also to disability studies because there is, you know, a current interest in disability studies around like maker cultures to, you know, experts, making, building, et cetera. And just think about like the creativity of disability happening through performance just in the simple act, very simple, ephemeral and very micro of like just lifting a mug out of like, mood from the table, which is like the opening pages of the book where we see Henry, one of my participants, describing how he, in, in an action that literally takes maybe five seconds, creates this utmost imagination where he's choreographing particular dance of moving a mug out of the table from the table, which will allow him to not spill the coffee all over. He might also have spilled the coffee, which is another disabled way of doing things, while at the same time feeling as least pain as possible and using, minimizing the use of his impaired joints. So he is doing the action in a way that the world around him, which is designed in a way that he cannot find a reciprocity or any kind of gesture towards making his pain less. He is creating a world where his pain will be still felt the least. And that action only exists in that performance, in that ephemeral performance of like, moving the mug on from the table. And this is what I want to emphasize by bringing performance into disability studies, understanding of making, and thus this maker culture or disability design, etc. So, you know, even in the way of like, as simple as act, of like just turning a button through a buttonhole, by like twisting, pulling off the shirt and fabric, you might be creating another way of inhabiting the world without necessarily inventing a tool or without necessarily cripping a technology or cripping a tool itself. So that's what I wanted to kind of emphasize the more capacious world building capacity embedded in the idea of performance or improvisation, you might call it, as such. As, well.
- [20:31]
D
Yeah, that's awesome. I love how you speak to it in the book and really make these actions come alive in ways that, you know, when you're in the actual moment, a lot of times you don't even notice. And I appreciate how you speak to that methodology of, you know, using those recordings and just like having a hyper vigilance to all these small choreographic moments that, you know, turn the world as if into. Or turn the world as if and as is into a world of as if and the possibilities in that performance. So thank you for speaking to that. I would love to kind of move towards your concept of shrinkage and how this is an ecological description of disability by incorporating the body environment relation. Would you mind speaking a little bit to that and how you're conceptualizing disability?
- [21:31]
C
Yeah, sure. Thank you. So, I mean, there is. The way that the book flows is like it flows from shrinkage to. The first part is about shrinkage, and then from there it moves to performance and improvisation. And that order, I think, is key to understanding what each term is or how they relate to each other. People have to come up with this improvisatory affordances because of having to living in a shrunken world. And that's the key. It's the shrinking world of opportunities that sets the conditions of possibility for activist affordances to emerge. It's not a world of abundance. It's not a world of, okay, here's. You can have everything. It's not a world where you have many choices. It's a world where you constrain. It's a world that is diminishing. It's a world where there is loss, there is pain, there is, you know, sadness. Some of these concepts which also, like, have been somewhat problematic in disability studies for understandable reasons that, you know, early disability scholarships has taken some distance to, you know, loss and any. Any kind of a negative association with disability. But I kind of want to resist that, you know, not because I want disability to have a kind of negative association with, but because these are realities that we are literally living in. And especially at this time of, like, climate catastrophe. These are actually more than even just a disabled body, like this entire, on a macro scale, entire situation that we have found ourselves. And so I think that's kind of important in that respect. First and foremost, the possibility afforded or what I would wish for the concept of shrinkage to do is for us to as and for us. I'm thinking of starting with the safety scholars, for us to find ways of building coalitions, find ways of building solidarities across many experiences, situations and processes, whether there's an involvement of impairment or not, that can still carry the attributes of disability. And that's what I wish for the term to shrinkage to enable. And the idea for shrinking world of possibilities is like, it doesn't have to be necessarily experienced by the impaired body as such, or when it is experienced by the impaired, but it doesn't have to be because of X or Y or z reason, you know, because of that impairment or disempairment. And this is in no way, for I'm not in no way like dismissing the specificities of impairment, which are all important. What I'm saying is that there is a connecting arc or a connecting thread that is running across, through all these disparate experiences, whether we call them as disability or such. And I want to name that as a shrinkage, as a kind of thinking of disability, along with Julia Min Avridge. Sorry, correct that. Along with Julia Minich, thinking of disability as a methodology, not an object of study, like as a lens. So that's how I'm thinking of shrinkage. And it is an ecological understanding of disability, because it's not situating disability in the environment or in the body, but in their mutual relations, which is the core of ecological thinking, which is the core of ecology, like the mutuality of organisms and environment relations has, you know, lies at the core of the field. So in that sense, it's a non dualistic concept. You know, it's not going in either one or the other direction, but it's literally looking at the reciprocal relations between the two and how shrinkage emerges from that, from those relations. So that's how I would think of approaching shrinkage as a tool to build solidarities across many different experiences and processes with other unnecessary involvement of impairment. And by this it can also allow us to. The idea of shrinkage can allow us to move across scales, you know, from micro to the macro, move across different species, bodies and organisms. It could be the organism that are living around, it could be the body itself, it could be the rivers, it could be the mountain that can be experiencing shrinkage and carrying the attributes of disability without the involvement of impairment as we know it. And this is how I think of the term. But let's see how that will be taken up by the Readers and the concept itself will take a life of its own. And I'm curious about that, actually.
- [27:14]
D
Yeah, well, I find it very valuable and I really appreciate how you emphasize that it doesn't have to all be like human centered and like a human supremacist way of thinking about, like disability. Like these kinds of experiences can be expanded upon and capacious and different ways of thinking about all these issues and experiences. So I appreciate that and to move, I guess, into, yeah, of course, into some of the chapters that you have written. So chapter two, you explain that pain is a negative affordance, and then you enter into a discussion of chronic pain and chronic disease, which I find very valuable because, you know, it does trouble some of the binaries, these experiences of chronic pain and chronic disease. So can you speak to how you consider chronic pain to call into question accessible environments and how this allows your concept of shrinkage to pluralize disability politics?
- [28:26]
C
Thank you for the question. So I guess kind of going back to what I have said earlier on about like some of the contentious issues in disability studies, like, of course there have been people like thinking of early feminist scholars of disability writing about, you know, pain early on, way early on. So there has been that in disability studies. So there is such a lineage. However, perhaps it hasn't taken as much attention as other issues, you know, building a coalitionary politics, like moving more for micro changes in policy levels, you know, more visible and larger changes kind of in line with that pain and chronic pain and disease perhaps stood more like as individualizing the issue of disability which disabled scholars have worked so hard to deindividualized or put it at the societal level. So kind of I want to push against that, of course, thinking alongside with the feminist scholars of disability and kind of bringing others from, you know, important work like Ellen Scarry's work, George Kangalam's work about disease and pain and finding it a more situated place in disability studies. So if we start with chronic pain, and that is actually moving a lot from my own experiences of living in chronic pain and trying to make sense of it, because when I am going, or I have been going through periods of serious flare ups, you know, the bed was my environment for a long time, for, for a long time. And like, that was like really the embodiment of shrinkage for me. And, or when I think about like other situations, like, you know, it's, it's when you have the chronically chronic pain, like with you, it's like a, like a big stone just coming up with this imagery now but like a big stone attached to your legs, and then you're like you're being dragged by it. And, you know, that's how the environment also shrinks. Like, you can't get to the bus stop because it's so much pain. Just the 10 steps to get there. Thinking, you know, the issues about, like, how much spoons will it get there take you there to make it. So there's that aspect of living with chronic pain that makes you really understand or think about the term shrinkage a lot, which is possibly what made me think about it in the first place. And then thinking and then finding, like, okay, let me think about how to put this. While living in such a shrinking world, because you were living in chronic pain and the world shrinks sometimes just to the parameters of your own body, wherever that body would be, whether the bed, whether the chair, while at the same time trying to open up a space where you can think of this utterly shrinking. And what feels like a very individualized moment where you feel like, almost trapped, like, this is so isolating. So trying to open up a space where you can actually find a sociality in it, find a way of building solidarities with other situations. Because while feeling so individualizing and so isolating, this might actually be a situation where others might be feeling or why other organisms or other people, whoever you want to call it, that are going through this. And how I can mobilize this experience as a way to connect to one another. That's how I kind of want to move from the individualized aspect of pain to building collectivities who are living this moment together without knowing each other, going through the same experience. So it's a way of, like, reaching out to one another, thinking of chronic pain as shrinkage. And it is a negative affordance in the sense that, you know, affordances are not always positive. That's how, I mean, Gibson talks about it when he first coins the term, like, what the environment affords, either for good or for ill. The environment could afford, like an apple on the tree, but that same tree could be a barrier for you if you're a blind person and you bump into it. So same thing with pain like. And especially thinking about specificity of the pain, rheumatoic pain is that because rheumatoid arthritis affects the joints, and joints are all about movement. There's something peculiar. Something peculiar about that as well, because every aspect of the. Every contour of your environment, of the space that you're in, then becomes a potential for negative affordance in the sense that if I try to lift this mug, the contours of that mug might actually induce pain in me because my finger joints are terrible, in terrible pain. So there's that aspect of the particularity of this chronic illness too. And I don't want to attach it to a diagnosis. I'm just trying to emphasize the specificities of impairment. We should not be glossed over. So there is that aspect around negative affordance which you asked. And when you think about chronic disease and here we can move away from. Although even if I started with rheumatoid arthritis, we can move away from it to other chronic diseases which create their own particular shrunken worlds. Even if it might not look like the shrunken world of rheumatoid arthritis, it it will still have similar effects in the sense that the environment as is becomes narrowed down in terms of the action possibilities it affords in comparison to a healthy non disabled body. Etc. Etc. So that's how I think of the chronic illnesses. And you can think of many examples here. Some of them I bring bring in the book as well, but I'll leave it there and see how the conversation moves.
- [35:33]
D
Yeah, thank you for speaking to that and I'd love to continue along this thread of how your conceptualizations are troubling binaries, kind of like inaccessible or accessible or able or disabled, and kind of how those look different in particular circumstances. The following chapter, which I have to say is one of my favorites, you talk about the habitus of ableism. Would you be able to speak to the habitus of ableism and how this is adding complexity to the accessibility and inaccessibility of material spaces and how your concept of shrinkage kind of speaks to those particularities.
- [36:22]
C
Thank you very much for the question, Clayton. So I think it's the way I the reason why I want to emphasize that we need to also think about ableism as a habitus is that there are some aspects of ableism that we will not able to be captured and identify as such. If we orient our definitions of ableism around only certain aspects that might have to do with language or semantics or identity politics, etc. And the reason for that, maybe I could expand on it further by thinking about what is habitus in the first place. Like what is it that the idea of habitus is emphasizing? And in the way I think about it and how habitus is coming from my Salemaus and Bourdieu, is that there are three aspects I see to habitus that I think are important in what I Describe as habitus of ableism. First, habitus is about actions and practices. So less about and I'm not drawing a distinction there, but it's less about the discourse or semantics or language. It's more about the action, it's more about the doing. That's the first aspect. Second, habitus is different from habit. Habitus is about like habits that are like inculcated in us through societal learning. So the importance of the societal learning that is embodied in the term, which is how Marcel Moss was like theorizing it in the first place. So whatever you're doing you have embodied in your actions is coming from a societal origin. So that's the second aspect. And the third aspect is it is done unconsciously. So it's not something you do it out of deliberate decision or outright thinking or explicit ideology or something explicit thinking. It's really something happening like out of habit, like casually, without any thinking, is the natural order of things, etc. Etc. And these three aspects is how I want to emphasize ableism to be operating as such. Yes, Ableism happens at the very level of like language through outright discrimination. And Ableism happens in law, regulations, in like day to day social interactions, whatever you want to think about it like it's everywhere. But there are places that Ableism also happens and it is in everyday actions of people, like in the way a simple gesture of a hand or in the way somebody turns their body against the other that are not so easy to spot, so easy to recognize and which tells us that there's so much more work to do still. Because habitus is so ingrained in our bodies, so ingrained because it has been like. It has been like something that we have been receiving through societal learning from the moment we arrive onto the world. Something that we are repeating again and again in drude and passing on to others. So all these aspects are really important to highlight when we think about Ableism so that we can have a better understanding of the ways in which Ableism can operate and develop tools to address those operations. And do not think that our job of like thinking that creating more livable roles is done by just like passing some legislation or asking the university to have like training on anti ableism. I don't know, like have an anti ableism training or something, you know, it's just that shows habitus of ableism can help us ashore or at least think about how Ableism runs deep in our bodies, in the way, you know, in our bodily operations, our motor schemes, our perceptual schemes, in our like Reflexes, gestures, things that we do very casually and without necessarily pondering upon it. Cool.
- [41:17]
D
Thank you for speaking to that. It's definitely something that's very interesting, compelling to think with. So to kind of follow some of the flow of your book, I'd like to transition from this conversation of shrinkage for a moment and talk about some specific activist affordances that you observed and analyzed. Would you mind telling us about some of those affordances that you archive in the book?
- [41:48]
C
Thank you. Yes. I guess what I'm really more interested is like, what are the readers or other disabled people factors of ordinances? Like, what are the other ways? I wish, like, we can have a, like, ongoing work in progress, documentation or archiving of activist affordances. Like even like we're just a website or like an archive of some sorts. Like a living archive of people.
- [42:22]
D
Yeah, that would be so cool.
- [42:25]
C
Wouldn't that be so cool? I mean, like, I would love to learn from other disabled people and their way of like activist affordances just, you know, sharing that. And I hope that, you know, this could be. Give some inspiration for that. Like, you know, something that really struck me is that when I was presenting the work that has led to the book in conferences or other gatherings, academic or not, is like people from the audience were coming to me right away, like, and I write it in the book as well. Oh, yes. Like, I'm so happy to see this because this is how I. I'm doing my, like, I don't know, like cutting my vegetables. This is how I'm preparing my breakfast. So there is this like, moment of like, this awakening, like, this desires, like, almost thirst for other disabled people to share their actors affordances upon seeing one from another. So I think that's really what's beautiful about it. Like, and I just hope that this kind of archive, no matter how limited, can kind of serve as a springboard for all the disabled people or for anyone living in shrunken roles to come up to have the invitation to share their activist affordances with one another and for those activist affordances to become almost like contagious and have a life of their own beyond the sphere of their own creation.
- [44:09]
D
Yeah, I love that. As I mentioned earlier, some people in my family experience rheumatoid arthritis. And I think of my grandma specifically, especially when I was younger, there would be things arranged in the house that I didn't even understand why. So, like in the couch that she always sat in, she would have strategically placed books, like around where she would sit, like against her leg or her hip or something to minimize the pain or something. And, like, I would always move it around or, like, look through the book and she's like, no, like, leave it there. It helps. And then kind of as a transition, I guess, to the next question, talking about People as Affordances. One of the examples in the book that you give is where this woman has a granddaughter who, like, tries to hold her hand and she's like, no, that hurts. And then the granddaughter asks, which hand doesn't hurt? So she wants to hold that one. And I remember asking my grandma, like, please carry me, pick me up. And she'd be like, oh, I can't. But then we would go sit on the couch together and she'd put her arm around me and that kind of thing. It, like, especially after reading this book, it gives a new meaning to some of those experiences that I kind of just pushed away as, you know, something insignificant. But now I feel like there's a lot more meaning to it. And as you mentioned, coalition building. So I guess to follow along with this topic of conversation, you do discuss how people themselves can be affordances and activist affordances. Would you mind describing some of that process and what that looks like?
- [46:01]
C
Well, first, thank you for sharing this lovely memory with your grandmother. And like, how touching. I mean, it means so much to me to hear. To hear these stories that the story of the grandma and the grandchild have touched you somehow and took you back to those times with your grandmother and have a new meaning about that connection with your grandmother and so thankful that you shared it with me. So it is somewhat touching for me to hear this from you and other readers in the future and hoping that what this book will do is already starting to do it. So thank you for sharing. So People as Affordances. Okay, so one thing that maybe up until that chapter, the readers might feel like, because it's somewhat coming late in the succession of the chapter, is People of Afford. People as Affordances. The readers might think that, oh, these are all individually created acts. Like, someone is like lifting a mug from the table. Like, and that might create the impression, which I hope People as Affordances chapter will prevent from happening, that these are like very solitary acts, which they are not. And neither activist affordances have to be the creation of the single disabled person, which is really important because first, the term affordance itself doesn't have to be about just one organism and the environment, because in the original conception, Gibson talks about the mutuality of affordances happening between people and people. Like, you know, it's more than Just one organism or more than just one body. So there's that thing. But more importantly is that. And when you think about it, and this might, you know, the people that are like, I more or less work with in the. In the. In my field work and also thinking of myself, have still some capacity to be able to kind of move towards activist affordances. But when a moment in time, when it comes in your life, when the world, with your, you know, your body becoming more disabled, the world more shrinking for you, you might not be able do the activist affordances anymore yourselves. And at that moment, they could still take place if people are around you, if you're lucky enough to have even just one person, or even just one living being around you to become your affordances. And that's where I see the expansiveness of activist affordances, that we are never alone in their creation. Even if it might feel like it's just one person creating it, others can take over the task and do it for you. And there's a care around that. And it just also doesn't have to be one person, although in most cases I documented it was either like a family member, a friend, etc. It could be multiple people as well. Like, I mean, we're just thinking of, like, certain disability communities, how they are sharing things and sharing care. And that has been written as well in Care Work and carewebs by Lia Samarazinsa and others. But to go back to this idea of, like, perhaps the example that you also took from the book, the grandchild not being able to hold the grandma's hand because it was in pain, and then learning over time not to hold, learning over time to let go of the desire to hold your grandmother's hand. And I think there's such a big care in that coming from a child towards the grandmother, because if I hold it, it's gonna hurt. And even if I love you so much, and even if loving in the way I see it, in the way the world is shown in front of me, loving generally manifests itself in the form of some embodied interaction, either by holding a hand or hugging you, I am ready to let go of that desire, because that's how much I love you. So that by letting go of that desire, I will not let you have more pain. So there is this idea of people's affordance and how this actually is kind of reinventing or subverting the traditional kinship relations or what should. Or the normative understandings of what should a relationship of grandchildren to a grandmother look like. And much of that, I'm thinking about the work of, like, anthropologists like Faye Ginsberg and Rainer Ab and their idea of what they call new kinship imaginaries. How they are, you know, how this moment of the creation of a people as a foreigner becomes a way to think about reimagining kinship relations. And also, like in the case of like, there was another example in the. In that chapter, one of my participants, who was very young when he got diagnosed with rheumatoid arthritis, like childhood years, going to primary school in a rural village in turkey around the 80s, where there's like major lack of infrastructure. And his home was just in one village far from where the school was located. And there's no transportation in between, there's no wheelchair whatsoever. And Ahmed cannot walk. My participant and his dad carries him to school back and forth every day on his back. And like, I'm doing that for almost like three years. And in that moment, how the dad, Ahmed's dad, becomes Ahmed's legs and, you know, he almost becomes his body by giving. Landing his leg on legs and his capacity to, to move and carry and walk to his child and to make up for all the lacking infrastructure of access. So that moment for me is like those moments of afford. Activist affordance creation is really important to emphasize. First, because it moves us from the idea that the false idea that activist affordance is a solitary act. Second, because there is so much more in the creation of activist affordances than just a wish to minimize the pain. There's also the effect of love for each other, the care for each other, and a father's care for the child so that he could get the education, your care for your grandmother, so your grandmother wouldn't have so much pain. So all those aspects of our relationships to one another built into the creation of an activist affordance. Making it more. More than a matter of just minimizing pain or just making your bodily properties match the environment around you or something, you know? You know, from any reductivist understanding of an affordance. Yeah, that's how I would see there are many aspects to add layers to its creation.
- [54:08]
D
Yeah, definitely. And I think it's really beautiful how you highlight that. And one of the things I appreciate most from disability studies is this politics of care that it like, constantly prompts us to reimagine and expand and, you know, learn better ways of caring for each other person and the environment around us. So following with that, I would love to talk a little bit about how you expand your work into the like, macro Level by talking about planetary shrinkage and how that's a very important concept in your book looking at climate change and the deliberate and systemic destruction of the earth. Would you mind speaking a little bit to listeners about how you expand disability justice politics to incorporate our planet being actively disabled?
- [55:09]
C
Yeah, thank you for the question. Let me start with this quote because it's really something that is always like, in my mind at least lot these days. And it's from Alison Cay Free's book Famous Queer Crip. At some page in the book, Ellison Cay Free goes back to a famous saying by disability historian Douglas Bayton where he says, like, and I'm not quoting word for word, but something along the lines of, if you look at, if we look at history, we will find that disability is everywhere once we start looking for it. So kind of Elson Kafer reverts that reverses that, saying that quote from Eitan, and she asks, why do we not look? Where do we like as disability studies or fail to look or are not like, turning heads around and to recognize as disability? And that's, that's really stuck with me because I think it's such a brilliant question. Where do we not look? And how I think about, in terms of planetary shrinkage or as an attempt to move from the micro level of the disabled body or disabled organism to a broader level, macro level of planetary shrinkage is like, okay, where are we not looking as disability studies scholars? And perhaps something that is falling on us, or at least on me as a scholar working on issues around environment, care and access is like, how can we learn to recognize disability in places where we are not used to traditionally seeing it? And by this I mean, what if disability is like, even if there is no impairment involved or an impaired body, what about this disability? What if there is disability also in, like, in organisms? What about like coral reefs, like, you know, bleaching of coral reefs? What about like shrinking coastal regions like that are losing land inch by inch every day? What about like mountains, like, where they do open pit mining and the mountain is literally like becoming less and less and to the point of like, disappearing at some point. What about the rivers? What about the rivers becoming inhabitable and then rivers and the fish in the river and the air itself. So all of these places, livelihoods, if you call it, all of these experiences where we are not necessarily trained to recognize disability or see disability. But what if there is also disability in all these places, places? So that's how I want to think around or work with the concept of Shrinkage, So it can give us some kind of a conceptual tool to be able to identify disability in places without the necessary presence of an impaired body and as a way to move from this anthropocentric understanding of disability, that it has to be about the human or that it is about the human. What about disabled organisms, microorganisms? And again, this brings us to questions around coalition building and how disability studies or disability politics and climate politics or environmental politics relate to one another. Because at this point in time that we have found ourselves in, I don't think we can talk about disability politics without talking about climate catastrophe, in the same way we cannot talk about climate catastrophe or climate crisis, environmental crisis without thinking about disability politics. I think that is such a moment that we are in now that we have to develop conceptual tools. We have to have certain vocabularies or ways of thinking and methodologies that can allow us towards this conjecture, this moment where things are no longer separable from each other. Things are so entangled. The way my life as a disabled person, the way I live that life, is so much entangled with how the river I am facing is going through a certain shrinkage, that we don't have the luxury of treating these as separate matters or as separate disciplines with their own fields of interest and questions. And I'm not alone in saying this. Many disability scholars are also, like, not calling for that. Disability justice activists like Eli Claire, since Invalid and Sunara Taylor. So I think it's really important that, you know, there's more, More and more work coming around that. And I hope that the idea of, like, shrinkage and actors, affordances emerging from such diminishing worlds, shrunken worlds, can help further that push, kind of having more conversations across disability politics and environmental politics.
- [60:51]
D
Yeah, thank you for speaking to that. It's definitely really important work for us to start engaging with. So this next question that I have is pretty long, so you're welcome to take it in whichever way you want, but I think it's. Well, I found it to be a really important piece of your work. So you open chapter four, talking about the destruction of Hurricane Maria in Puerto Rico in 2017, calling attention to how infrastructural collapse challenges notions of disability through impairing injury and killing people and such instances of, like, power plants exploding or traffic lights falling. For these reasons, you make the case that our politics of care should include public infrastructure and accountability for the lived environments that are being created or innovated or renovated or destroyed. It opens up this discussion where you say the histories of racialization, colonialism, imperialism, capitalist expansion, heteropatriarchy and sexism not only blur the categories of able bodied, non disabled and disabled, but also contest the separation of the environment from the body. Can you expand on why it's important to account for these regimes of oppression in your theorizing of disability and how this ecological conceptualization of disability, the incorporating of the body, environment, relation, can expand our politics of care?
- [62:39]
C
Thank you again for that question. I really like all your questions and how beautifully they were framed. But I especially appreciate in this question you're wording around accountability for lived environments. I think that's really the key here. I mean, if you think about like the world in that particular case, I gave the example of Puerto Rico and then. And this could be slightly disturbing for readers. So just a little bit of, you know, thinking of my own homeland and the recent devastating earthquakes that happen in Turkey, which made me think about a lot about those, what I wrote in that chapter, going back to it and rethinking it in more disturbing ways and living, seeing through this devastation. The, the idea is that there's constantly building happening everywhere, like endless construction, endless desire, of course, which is very much connected to the ideas of growth, progress and building more. And this of course, capitalist desire to consume more and the need for capital to continuously accumulate. And you know, all of that has been written and said and there's been lots of things that has been said about that. What I'm more interested in that is like really the question of how come, how this like endless desire or rapacious desire to continuously build and construct and is actually creating or leading to mass disablement in a circular loop. And of course one can think about things like the disaster capitalism, Naomi Klein's disaster capitalism. And this what happened in Turkey's recent earthquakes. And there are precedents to that. It was just not this moment. There have been many earthquakes. Is this rapacious desire to continue to build and construct and for things to collapse, for infrastructures to be becoming debt making machines, they have to be built first. You know, things are built by people through certain mechanisms, through certain infrastructures that they put in place. And if you design into that structure of building machine a certain uncaring. And this is like something that I quote in the book, like it was, I think Tony Fry, who calls it designed uncaring. Things are just becoming like waiting there to become like debt making machines, all these buildings. And I think there's an importance around, like carrying the discussion of disability around that and Especially in disaster discourse. Because nothing about this has to do with nature. You know, as if there was this untouched pristine nature like just creating these disasters. And that has already been like criticized by feminist scholars, indigenous scholars, etc. So I think the accountability as you framed it beautifully, the accountability is the key here. Like how are we creating environments that are going to be becoming true lack of care or designed uncare built into them, that are going to be becoming disability making machines. And it is a circular loop unfortunately. Because when I think about the earthquake in Turkey, those buildings didn't build themselves just to become the rubbles. They become those buildings built themselves through utter corrupted governments, through their decisions to let many things go lax, the regulations, have zero or whatsoever oversight around building permits. Letting things go away and bring like construction amnesties and letting a fraudulent sector to grow. So all of these have created the scale of the devastation that was experienced in Turkey. And when I think about that, it's not ending there either. You know, the earthquake happened and it's not going to be like okay, we are past that. There's the rubbles left by the earthquakes, not to think about the over like 50 millions of lives lost and devastated. Then the rubble itself is left there. And then the way that rubble is taken care of at the moment by the state authorities is complete, uncaring, repeated. The rubbles are like being thrown away in locations where there are like people dwelling in tents. And then you're letting that rubble create again another level of disaster in the long run through the creation of dust, through the leaking of all the pollutant chemicals from asbestos to lead. Again adding to another circle to the same circular loop of disability making. You know, that's just another deceptive making there in the long run where people have cancers, asthma and other diseases, not to mention these people have already gone through like a devastating disaster. And then in place of that all the rubble you're like building like promising to build new constructions. So it's just this endless loop of like disaster capitalism. And I do think that there is more, there's more need in the safety studies to engage with disaster studies. What's happening, especially what's coming from what's happening in the global south where and where the brunt of the climate crisis is really carried by the already precarious populations. So there is more need to talk about all these issues. That's how I will end it there. Yeah, more research needed, more thinking needed.
- [69:43]
D
Yeah, that's a good challenge for us to wrap up on. So as we're concluding this discussion, is there anything that we haven't had a chance to talk about that you would like to speak to or any materials or resources you would like to share for people who would like to continue engaging with these topics?
- [70:07]
C
I want to thank you first for the beautiful conversation, for engaging with my work, taking the time to read it and come up with this beautiful and really nicely crafted questions which made me also read. Thank you. Yes, sharing your own stories in terms of resources again, I'm very proud of the work that we do at Texas in the Making Lab and the projects that we are doing around like environmental crisis around the Anthropocene and how it relates to disability. Our research creation work around accessibility and access issues, trying to push the understanding of access beyond institutionalized settings or limited and reductive understandings of access more towards thinking of access in creative terms as a continuous experiment and our work around anti colonial issues as a lab operating on stolen Indigenous lands, how to engage with Indigenous sovereignty as most of us are settlers and thinking of disability in relation to Indigenous issues, working around building more meaningful connections with Indigenous survival, resistance and disability studies, thinking about access more critically from that perspective as well as and also like thinking about access to knowledge, how we create knowledge in the academia, thinking of especially the, you know, ablest roots of academia as Jay Dolmage has nicely traced in his book Eugenicists and Colonial Roots of Academia and how to create spaces that can value access. So these are the things that we are thinking about collectively in conversation with each other through accountability and through being respectful to one another. So if you're interested, I would strongly recommend checking out our work and the beautiful work of all the members of Access in the Making Lab. Yeah, yeah.
- [72:37]
D
Thank you for sharing about that. It is very exciting work. So thank you for speaking to that. Well Dr. Dakmache, it's really been a pleasure speaking to you and I really appreciate our conversation. Thank you so much for sharing your time with me and for sharing this book and your work with the rest of the world. So thank you so much.
- [73:03]
C
Thank you. Clayton, thank you for this invitation and for engaging with the work and for the wonderful conversation. Sam.