Crip Pandemic Conversation: Textures, Tools, and Recipes

Introductory Roundtable

As a first possible entry point into “Crip Pandemic Conversation: Textures, Tools, and Recipes,” as well as to the “Crip Pandemic Life: A Tapestry” collection as a whole, we include the full, unedited video-recording of the Zoom roundtable session. The video includes ASL interpreters and captions. The video is also accompanied by a downloadable, unedited transcript.

As a second possible entry point, we follow the video and transcript links with a lightly edited, text-only rendition of the conversation. We have also included a glossary that serves as a contextualizing access tool for concepts and terminology that show up in the conversation. In the text-only rendition, when a word or term that appears in the glossary shows up, it is hyperlinked. The link takes you to the glossary entry. Using your “back” navigation function brings you back up to where you were in the text. 

Video and Transcript of “Crip Pandemic Conversation: Textures, Tools, and Recipes”

PDF transcript for roundtable video.

Narrative Description of Video

The Zoom call is laid out with camera displays in three rows. At the start of the call, the top row, from left to right, is Aly Patsavas (she/her), Margaret Fink (she/her), and Theodora Danylevich (she/they). The middle row, from left to right, is Aimi Hamraie (they/them), an ASL interpreter, and Sandie Yi (she/her). The bottom row has Mimi Khúc (she/her) in the middle and two black screens on either side. Throughout the call, the positions of each person’s video shifts, with the exception of the two black screens at the bottom left and bottom right of the call, indicating two participants who have their cameras off. At 1:16:16, the top of a small Pomeranian dog shows up in Sandie’s window.

Participant Descriptions

Alyson Patsavas: a white person with short brown and gray hair and glasses wearing a blue sweater, sitting in front of bookshelves.

Theodora Danylevich: a white femme person wearing a purple plaid flannel collared shirt and messy grey-brown bun with long bangs and clear glasses; behind her is a white dry-erase board with green antennae drawn on that frame her head, to appear insect-like.

Margaret Fink: a white woman with long brown hair and a denim button-down shirt, sitting in an office with a lamp, plant, and chalkboard in the background.

Aimi Hamraie: an olive-skinned Iranian person with transmasculine gender presentation, wears a black t-shirt. They have short dark hair and rectangular glasses.

Mimi Khúc: femme-ish Asian American woman with very short black hair wearing a maroon shirt showing tattoos of birds on her neck and shoulder, sitting in front of a virtual background of a cafe/bakery.

Sandie Yi: a 40-year-old Taiwanese woman with long black hair and wearing a gray shirt against a blurred background. 

Michelle (ASL Interpreter): a white woman with hair tied back wearing a headset with microphone attached and a black shirt. 

Faith (ASL Interpreter): a white woman with long blond hair wearing a black shirt. 

Lightly Edited Text-Only Version

Welcome and Overview

Alyson Patsavas: Welcome to the introduction for Crip Pandemic Life. This conversation serves as one possible entry point into the special section, which provides a collection of material that explores, reflects on and seeks to archive crip experiences during the ongoing COVID-19 pandemic.¹

Taking part in the conversation, we are extremely fortunate to have Dr. Mimi Khúc, who is a writer, scholar and teacher of all things unwell. Her work includes Open in Emergency, a hybrid book arts project decolonizing Asian American mental health, and her forthcoming book, dear elia: Letters from the Asian American Abyss, is a journey into the depths of Asian American unwellness and an exploration of new approaches to building collective care. We also have Dr. Aimi Hamraie, an Associate Professor of medicine, health and society at Vanderbilt University and director of the Critical Design Lab. A disabled, diasporic Iranian/SWANA designer and scholar, Hamraie is the author of Building Access: Universal Design and the Politics of Disability, co-curator of the Crip Ritual exhibition out of Toronto in 2022, and host of the Contra* podcast. Dr. Sandie Yi is an Assistant Professor at the School of the Art Institute of Chicago and a disabled artist and culture worker whose work “Crip Couture” focuses on collecting and archiving disability narratives by collecting bodily artifacts, including skin flakes and hair. She is a Program Director of Disability Culture Activism Lab and a co-director of Bodies of Work. Dr. Margaret Fink works at UIC (University of Illinois Chicago) as the director of the Disability Cultural Center, a space devoted to building disability community, exploring social issues, and dreaming more accessible futures. Her background is in cultural studies. She’s written about comics, disability, and ordinariness, and she’s taught courses on reality TV, American literature and the mind/body distinction in trans and disability narratives.²

Theodora Danleyvich: As we note in the 2021 “Cripistemologies of Crisis” special section of Lateral, the conditions of created and perpetuated crises often make such knowledge as precarious as it is precious.³ The essays in “Cripistemologies of Crisis” articulate the importance of building crip crisis knowledge from unstable, fractured, and hyper-empathetic crip spacetimes and lives as starting points for critical disability studies methodology in service of justice.

With this section, we have asked contributors to evidence their ephemeral and everyday modes of living and surviving. In doing so, this collection aims to build an archive—or a tapestry—that collectively addresses and exceeds the following questions:  

• How do we evidence our survival, grief, loss, joy, and pain in the face of escalating and ongoing precarity, and loss? 
• How have already precarious yet deeply interdependent modes of living been reshaped or reoriented in the present crisis? 
• In what ways has this fostered or frustrated the inventiveness and resource sharing that are crucial to our survival? 
• Alternatively, how have the conditions of our lives reframed what counts as theorizing and the stuff of knowledge production within crisis? 
• How does this relate to, challenge, and crip our very understandings of evidence? 
• Perhaps, putting it more plainly, what do we need to not forget?

Aimi, Sandie, Mimi, and Margaret have thought deeply about some of these core questions, navigating crisis modes; crip ingenuity; community-making; crafting survival; cultural and creative modes of knowledge production; and leaving evidence. We invite you each in turn to reflect on how your existing practice or thinking was already engaging these questions before the pandemic, and to discuss how the pandemic reshaped or just affirmed your thinking, took it down another path, or however you might characterize that interaction of your work and our context.

Let’s start with Mimi. I am so excited that we’re now coming full circle here—I actually consulted with you two years ago, as we were getting this project going from just an idea into a thing.

The Before, During, and After Times: Our Thoughts and Our Work in the Pandemic Moment(s) 

Mimi Khúc: I remember two years ago. Was it really that long? Time is not a thing anymore. I’m super excited to be here and to talk about this project and the kinds of unwellness and care work that we have been seeing during the pandemic. 

I’ve been thinking about unwellness for a long time now, though not always with that name. The questions that have animated my work over the last decade are “What hurts? And how do we go on living while it hurts?” Open in Emergency (OIE), as you mentioned before, is my book arts project on Asian American mental health. That was a creative and collaborative effort to name and capture collective unwellness, to explore its shapes, and to see how the community is finding ways to survive beyond the medical models dominant in psychology and psychiatry. So, mental health from an arts and humanities perspective.

In weird ways since OIE’s emergence—that was in 2016—I’ve tried to track the landscape of student unwellness in particular. I’ve visited, at this point, dozens of universities and I’ve met with thousands of students as a result of Open in Emergency. And listening to the students has really shaped how I have thought about unwellness, as well as my current book project, forthcoming from Duke.⁴ It has helped me develop a framework for what I call a “pedagogy of unwellness,” which is the recognition that we are all differentially unwell. If you start from there—if you realize we’re all unwell in different ways, in relation to the different structures in our lives—what knowledges do we gain from there? What needs do we recognize? What structures do we need to build? 

So, then, cue the pandemic, which was unwellness and a crisis of care of unprecedented shape and scale. My questions felt even more urgent. Like, what does it mean to track unwellness and hurt, now? And what kinds of structures of care do we need, now? 

The pandemic, for me, made the tensions of access and care in our institutions ever more acute. I saw this most clearly in the university and in the classrooms where I’ve been teaching. I’ve been teaching at Georgetown University throughout the pandemic, with a short virtual stint at the University of California Santa Barbara. What I noticed was, early on in the pandemic, a sudden recognition of need, an expansion of access and care, and what we call accommodations, right? But I sensed an underlying kind of panic around deviating from business as usual, around not doing the normal and the normative anymore. 

While I was hopeful when I first saw this expansion of accommodations, over the last year I’ve watched all of those things get rolled back. So we did not learn, as I had hoped, that we all have needs and should have those needs met. I was hoping that would be a lesson out of the pandemic. I think many of us have learned that, but not all of us. And definitely not our institutions. 

I’ve seen universities and faculty double down on ableism—and so the work continues, of witnessing what hurts and finding new ways to care for those hurts. As I witnessed my own students’ struggles, I realized that I myself needed to find new ways to care for my students. The classroom felt like it had transformed beyond anything I had recognized before, because of the conditions that we were expected to continue learning under. “Instructional continuity,” whatever the fuck that is—right? The pandemic really forced me to reckon with my own access practices and pedagogy in the classroom, and with realizing that what I had been doing in the before-times wasn’t as caring as I thought it was. And so I’ve had to really rethink access and care and need in the classroom, especially over the last year. I explore both of these things—the university’s ableism and the transformation of my teaching during the pandemic—in the new book.

Sandie Yi:  I was really thinking about the section’s questions around “what did we learn from the pandemic?” and what not to forget. A part of me is like, whoa, it feels like a long time—I kind of forget what’s happened already, and I think many of us have experienced this pandemic fog. Things have become really hard to capture at many, many levels.  At the beginning of the pandemic, I was finishing my dissertation, and I started working for Access Living, an independent living center here in Chicago, as coordinator for their Arts and Culture program. We have a history in the Arts and Culture Program and also Bodies of Work, a network of disability art and culture, of featuring and promoting disabled artists’ work. So, focusing on gathering support and finding professional training opportunities for artists with disabilities who mostly prioritize their identity as disabled artists. And my job coming in as a program coordinator also brings in my background as an arts therapist whose work focuses on community engagement.

And my practice was never really set in like a treatment setting. I think this was something that I found myself struggling with at the earlier stage of my own career. So when the pandemic hit, I remember having a conversation with Margaret Fink that asked “how do we build a community together?” And so we organized online workshops and tried to just bring people together through various forms of art. During that time, I started running the Disability Culture Activism Lab for my art therapy students, as well, at the Art Institute of Chicago, where a lot of students came to the program wanting to help other disabled people. And there is a huge number of students who do come in with their own disabilities, but the larger field of art therapy doesn’t really pay attention to that. So students come in bringing this passion to help people—“Yes, I want to help people who are going through struggles.” But the professional expectation in any mental health field is about, well, you need to show that you can actually be the professional. And so there is oftentimes a line separating, well, you are either the client, or you are the expert who is the therapist. And so I do find that, wow, there’s a line between showing up as who you are and wanting to be the professional. 

So, how do you help people to be professional if they cannot embrace their connections to the disability community? I have students coming in with more awareness of “yes, I am someone with a disability,” or “I don’t know what it is that I have, but I’m definitely struggling with the system.” At my lab, we pair people up in our community engagement events, and students work with participants. During the pandemic, oftentimes they are doing an online mental health check-in, where I would ask them to create portraiture of each other.

So overall, my practice is about being an agent connecting people, or connecting them to the other resources, and making our community bigger, or trying to discover how we can support one another. Knowing that as a professional mental health provider, you do not have to do every single thing, because, even as a disabled person, we don’t know everyone’s disability. And oftentimes people forget that, and are thinking that we have to do everything because we’re the caregivers.

But I think care is definitely a—sometimes it’s really sticky. And sometimes it’s—sometimes it happens when we don’t know it is happening, and therefore, we exhaust ourselves a lot from all these emotional labors and kind of like wear ourselves down.

Aimi Hamraie: I’ve been fortunate enough to be in disability culture and community for a while, and to be connected to other disabled people through organizing and other things. For me, part of participation in disability culture before the pandemic that was really normalized and important was the option to participate remotely or asynchronously. I think there are a lot of practices and technologies around that, especially in chronic illness and autistic communities. 

In my teaching, I had been learning and watching and absorbing the way that, for disability studies scholars, it was expected and typical to have something like a livestream or a listserv or a web forum prior to the pandemic, and all of the ways that practice affected our pedagogy as disability studies scholars. Quite a bit of my courses were already built out online and things like that for students who couldn’t be there in person. For a long time, in my organizing work, I was observing how disability communities were responding to, for example, Occupy Wall Street—which was the first place I really think I was doing disability justice organizing with other people. There was a lot of discussion in our local Occupy chapter about how there wasn’t a need to facilitate access because disabled people weren’t present, and there were a group of disabled people that were like, “hey, here we are, and also there are more of us, and they are not present because they need to participate from home, and sometimes we do, as well.” And so learning about different techniques of facilitating remote participation has been a really big part of disability culture and access for me. And in my scholarly work and in my design work, I’ve really been trying to identify the practices and values and techniques that underlie these types of cultural norms that we have. And I’ve been learning from the history of disability movements and communities, and also challenging our historical communities to do better and to embrace intersectionality and anti-capitalist approaches.

I think it’s probably been six or seven years since I started the critical Design Lab, which is a group of disabled artists, researchers, and designers, and we address design from a disability culture perspective. And part of what we have learned through the work that we do is that access work isn’t just about producing an accommodation. It’s also something that’s culturally productive and transformative. And it leaves evidence. For example, when we transcribe something, that leaves evidence: we can archive that. We develop different tools and techniques for producing access according to the kinds of spaces and opportunities that we’re working within. I’m also a material culture historian, so I work a lot with the physical things and objects that disabled people have created and left behind and try to make sense of them, as part of history and as templates for media-making. Before the pandemic, in the Critical Design Lab, we always did our meetings remotely because we had members who were kind of scattered all over the world, in different time zones. We developed practices of media-making that were enabled by that kind of remote use of technology. We have a whole protocol for creating accessible podcasts, for example. 

And then the pandemic started. 

I kind of found myself in this weird space: I had just gotten tenure—literally the week before the lockdowns, or something like that. And I was put on all of these committees about campus reopening and stuff. At the same time, I was working with my colleagues in the Accessible Campus Action Alliance to actually promote hybrid and remote forms of university teaching and learning. This was pre-masks, pre-vaccines, and I was trying to give a justification or a set of rules for addressing accommodations around all of that. In the Critical Design Lab, we did a lot of pedagogical work and we have a post about accessible pedagogy and remote pedagogy that I don’t think I anticipated so many people would use, but it’s been downloaded like 300,000 times or something like that.⁵ And I hope it’s been helpful for people who haven’t had to think about that kind of thing before. We have the Remote Access dance party that some of the people here have been involved with. moira williams and Kevin Gotkin and I wrote about this in the special section to be published in Spring 2023, and Margaret Fink is in there, as well. And that’s really an event where we try to use different technologies of access and hacking to see what else we can do—what other kinds of disability culture we can produce during the pandemic. Two other lab members Cassandra Hartblay and Jerah Moesch and I also curated an art exhibition that went up in Toronto after a year of COVID delays that also has this really cool virtual website that Cassandra and her research assistant created together, and Jerah did all of these amazing digital events as part of that. We had workshops for the artists and stuff. Through all of that, we got to experiment with things like, “what are the different possibilities once we accept that remote participation is okay and good and necessary?” 

The last thing I’ll talk about really briefly is that this is all feeding into a new project that we’re doing now called the Remote Access Archive, where we’re actually trying to document different ways that disabled people used remote participation before and during the pandemic, and we’re finding all sorts of interesting stuff, and finding that it’s really led by disabled cultural producers and artists. And they are really the technology makers in this situation, and there’s a lot for us to learn from there. I’m excited to see how that all unfolds, as well. And thank you so much.

Margaret Fink:  I was just fantasizing that I should start talking without unmuting, because it feels like that needs to happen at least one time in this conversation. But I’m excited to just be together today. This feels slightly experimental, in a lovely way, to do an introduction this way. 

I was reflecting on my thought and practice and how it’s been shaped in the pandemic moment. And I found myself really leaning on the before-times, because the kinds of questions and practices that I’m thinking about actively right now are all involved with what is it to build a Disability Cultural Center (DCC) at an institution of higher education. I was hired in August of 2019, so I was around for seven months or so before March 2020, when the pandemic hit.

I connected most to the question from the call for submissions that was about, you know, that inventiveness and resource-sharing that are crucial to our survival. That was absolutely a huge piece of the before-times for my colleagues and I, and it’s a way that there is a sense of continuity from before the pandemic to now. Like I said, we were really just trying to figure out how do you hold space for disability culture—if we’re talking about community, if we’re talking about different disabled modes of operating, disabled modes of valuing things, disabled modes of knowing that just come out of that magic that happens when disabled people get connected.⁶ That’s something that I think is touched on a few times in this special section. 

The DCC is lucky to be part of a collective of seven cultural centers at UIC, University of Illinois Chicago called the Centers for Cultural Understanding and Social Change. So that offers us a lot of possibility models to gather pieces from as we do this work of building.⁷ But I would say my intellectual life and the practices that we were working through was mostly a project of confronting how institutions of higher education are just––no surprise to anyone—super inaccessible, full of bumps and wrinkles for disabled people. So, I think this project continued during the pandemic, but I’m kind of thinking of the pre-pandemic moment as the beginning of this project. But I would say that my thinking and my practice has been part of a grand experiment in what we might call “interdependent cripistemology,” which is kind of a mouthful.

I’m talking about the fact that I was dreaming and problem-solving and building alongside people, disabled people, who were working at the Disability Cultural Center. And I want to take a little bit of time to name them now. So I’m thinking of Lily-Diego Johnson. I’m thinking of Sylvie Rosenkalt—I’m getting emotional—Brian Heyburn, and Jordan Alcantar. So we’ve been having these really important conversations about how do we take up space in a university context? Mimi, I was not here when you came to speak at UIC, but your lecture had quite a ripple effect, quite an impact for giving people language to talk about unwellness and lack of care in the university setting. So we were just figuring out how to be a Center: how to be professional staff in a university where, you know, things like tabling, involvement fairs, was hugely inaccessible to a lot of us; trying to listen to people in a noisy room; relying on visual cues to figure out if somebody wants to talk to you or not; and so on and so forth.

We held each other in access intimacy when we were really exhausted with all of the access labor just to go to meetings, to show up for other communities on campus in solidarity.⁸ And we also talked a lot about how do we navigate certain unspoken rules and norms about what counts as success, on the university level, and what you’re allowed to say and what’s not appropriate to say in certain university contexts. How do we operate from a place where we’re like, “wow, ableism is pervasive, and a lot of people are really struggling?” And how do we hold our own success when we’re aware that some of the rubrics for measuring success are not great for measuring our success, like attendance numbers? I mean, we did okay–we had some nice turnouts! But you know, attendance numbers. Trainings that are offered about, you know, how to be nice to disabled people, that kind of intervention. That’s what we were thinking through.

But I think our ways of understanding our success and our value and our impact were around some of the crip experiments that we were doing with having events. You know, as Aimi mentioned, some of these practices were very much standard—or more usual, or more typical—in the disability spaces that some of us were just really lucky to have already experienced and bring to UIC and the university space here. We’re super interested in and invigorated by talking about how our workplace was unfolding and how our relationships were working and how they weren’t necessarily the standard, but they aligned with our values. 

It was interesting to notice that a lot of people responded, a lot, to just having some kind of space that felt different from every other space that they were moving through at the university—the fact that we have lamp lighting in our lounge, the fact that we do an access invitation at the beginning of our events. We tell people, “please feel free to get up and move around.” All of these things felt like they shaped a different kind of space in a way that was impactful. To tie back to the question from the section, these were all instances where crip community was a space for survival in a larger environment that maybe didn’t feel quite so nurturing. I’ve been thinking about that a lot in terms of vulnerability and even—it’s a loaded term—exposure, to the experience of misfitting in the university.⁹ So I would say when the pandemic hit, I agree with what has already been said, that there was a sense of phases. There was kind of an initial phase of, you know, we have resources. Like we shared out Aimi’s guide for sure. We had already been Skyping people in, in the pre-pandemic times, to our discussion groups. This was something that we had tried before. There was less of that panic that Mimi brought up, that other people seemed to be experiencing. And we did just kind of let ourselves experiment, and play, and “let’s just try these different things.” But as I’m reflecting now, we are in the late-stage pandemic, if we want to talk about it that way, where there is this pressure, this “return to normal” (big air quotes) happening. 

It feels more like we are back in that position of needing to lean on one another, find these crip enclaves or coves that support our survival of exposure to these, you know, massive trends that I think Theodora was mentioning earlier: much more apparent eugenics (it’s been there the whole time—it’s not something that is in the past, absolutely not), and just disregard for disabled lives, all of those kinds of things.

To wrap up, basically, I’ve been noticing that when we’re trying to assess the value of different kinds of work for the Disability Cultural Center, the pandemic has been a major push in the direction of knowing that it is very, very valuable to sit in what sustains you and your community. And we will hopefully find a really nice interface with some of the more legible forms of value on the level of the university, for our own continued existence as a center. 

Tapestries, Recipes, and Archives 

Alyson Patsavas: “Crip Pandemic Life” takes up a key thread from disability justice writer, educator, and organizer Mia Mingus to assemble an archive of evidence and experience emergent from crip lives from the pandemic. As Mingus writes, “we must leave evidence, evidence that we were here, that we existed, that we survived and loved and ached.”¹⁰

And I think this need to gather, hold space for, and preserve evidence of all of the things that you have all talked about—our angers, our fears, our grief—for many of us have felt increasingly urgent during the pandemic. 

In this spirit, “Crip Pandemic Life” offers a unique digital archive that brings together creative and scholarly reflections to document the experiences of folks during the pandemic. And as such, it includes multimedia projects, personal narratives, digital renditions of sculptures, masks, zines, and critical interrogations of the pandemic policies and politics.

You have all had a chance to look at some of the evidence that the collection in our special section offers and contribute to it as well, in some cases.  What are some of the things that struck you? Were challenging? Apt? Lovely? Interesting? What do you want readers who are engaging with this collection to notice?

Mimi Khúc: This is Mimi. I’ll make an overall comment first. First of all, the collection is fucking amazing. The kind of breadth of what you’ve been able to capture is stunning.

And some of the through lines that I saw through it that I really enjoyed was first, seeing striving to survive what the pandemic has wrought. So, new forms of danger and new forms of abandonment, of structural abandonment. But then, in response to that—this is for me what was really breathtaking about the section—is seeing the different strivings to create care and connection through all of that. And how joyous it could be.

And I’m thinking here of Remote Access, the crip nightlife party that Aimi was a part of, with Kevin Gotkin and a bunch of other folks.¹¹ The creativity behind all of the different ways to explore and create access and care, in all of these different forms—all of these different virtual forms, and then also hybrid forms—and care for our bodies and our minds through all of that. Like, access doesn’t have to be the awful accommodations process, right, that we encounter in institutions. That is, the kind of bureaucratic drudgery that—everyone experiences it that way, even the people trying to get the accommodations, or maybe especially the people trying to get the accommodations.

What I saw here was the joy that’s possible in creating access together. By being creative, by leaning on each other, by being vulnerable together and trying new and weird shit. That was amazing. That was so inspiring.

Aimi Hamraie: Aimi here. Yeah, I just want to echo Mimi in saying this is such an amazing collection of contributions, and essays, and creative work, and lots of experimental text formats. I really appreciated everything I read. And this makes sense because of the intention behind the call—like there’s quite a bit about remote access in this special section. So I just kind of made some notes about a few of those that I think also capture some of the complexities and frictions around remote access, as well.

We know that, of course, many of the types of accommodations that were once made available for both disabled and non-disabled people at the start of the pandemic are now being taken away. And I think in this section we get some of the textures of why those forms of access are really important. There’s quite a bit about the safety of home, for example, as an accessible space that’s self-created. There are references to Leah Lakshmi Piepzna-Samarasinha’s idea of writing from bed, and a few different people kind of made references to that, for example in Sav Schaudleraff’s creative piece or in Rebecca-Eli Long’s piece about like the safety of knitting as a close, embodied practice. Like these kinds of things that we get to do as part of our spheres of participation when we’re able to do that from home.

There’s also this thread about webs of connection through the internet and other channels that I think has been talked about a lot in disability media studies for the last like twenty years, but there’s a lot of really good primary source evidence of it here. Several different virtual worlds are mentioned: Animal Crossing, the Glitch Realm (which is part of the Remote Access parties), the virtual network Sick in Quarters which I hadn’t heard about before but I was excited to learn about. And then I was also really interested in all of the different digital zines there were in here—thinking about zine-making that really started out as a very physical, material process of cutting and pasting and then what becomes possible when we make a zine digital or call something a zine, and what sorts of DIY communities, histories, and genealogies that connects us to. I think in a few different places there are also really interesting methodological notes about the norms of access that are emergent in different digital formats and spaces. So for example, the Restorying Autism Collective talked about applying principles of relaxed performance, which is for in-person performances, to a digital zine-making workshop. I thought that was really interesting.

There are also—there’s a whole piece in there, a visual art piece, from Sam Fein about depicting people who are isolated and incarcerated and institutionalized, and that’s the sort of other side of remote participation. It’s that for people who have connections to histories of institutionalization, it can actually be really inaccessible or bring up a lot. And so I thought that was a really important reminder that we can’t just valorize remoteness.

And I kind of came away from a lot of these just, I think, having like a more—kind of like a deepened closeness to the way that embodiment typically gets discussed in disability studies. And just kind of thinking about all of the different ways of being embodied, and how proximity and distance and mediation relate to all of that.

So thanks so much for sharing these pieces with us. I really enjoyed getting to take a look at them.

Margaret Fink: This is Margaret. I will chime in. I agree. I really appreciate the analysis that you both already shared. And I was finding myself drawn to two patterns which are part of an overall pattern. I thought there was a lot of texture, for lack of a better word, to the collection of the whole special section.

Aimi was saying that, yes, there were a lot of new forms of accessibility that became possible in lockdown but then, for some people, actually, the experience was quite different. There were new forms of inaccessibility and maybe having to confront trauma related to carceral situations that they had been in.

I wanted to just point out that there are a few really cool examples of situations where smallness and being local is important and crucial to the project. So I’m thinking of Sandie, you and Alison Kopit talked about the “Masks for Crips” project, and how keeping it pretty confined to Chicago was an important piece of how that work unfolded for you. And I’m thinking about my experience as a driver, like, that being the one situation where I would traverse long distances of space in a situation where I was otherwise in lockdown. But I really loved the way that you two pointed to that piece, the being local, being small, like the people that you actually know being the people that were being connected to the project.

And then the other example that I’m putting in a similar analytical relationship is the “Corona Look of the Day” that Bethany Stevens and Sarah Palmer shared.¹² And I was just impressed that they did it every day. I am not a person that can stick to those kinds of daily rhythms. But I thought having so many small instances ended up painting a really complex picture of, you know, this life that they wanted to leave evidence of.

So I just appreciated that a lot. I wanted to ask about the tapestry word in the title. Does that have a story? Because I kept thinking about it when I was reading the section.

Theodora Danylevich: Yeah, well, I—well, it was in one of the threads from Open in Emergency, Mimi’s project, that I thought was so compelling. Because that was part of your project, too. Like having, trying to imagine how a digital archive can also be a tapestry. You know, obviously evocative of the AIDS quilt. You know, a concretization of how communities can hang together. 

Alyson Patsavas:  Yeah, I will just add that I also like thinking about it materially. Tapestry is sort of working with the materials that you have to build something that isn’t encompassing, right?¹³ The archive has its own sort of problematics of presenting something that’s comprehensive, that is full, that is sort of speaking to like all of a set of experiences that, of course, that’s not what this collection is or even can be.

There’s lots of voices that by virtue of the sort of precarity of our lives are absent from the collection. And so I think this is more of a subsequent, post-decision reflection, but a kind of materiality there that the tapestry is what you built with what you have. And I think that’s what this collection is in some ways. There’s of course pieces missing and pieces that we can add on to to make other fabrics.

But of course I should give the space to Mimi to talk about the concept and the word, as well.

Mimi Khúc:  This is Mimi. Thank you. I loved hearing about both of your theorizations of tapestry as a physical and textural way—the word texture has been coming up and I really, really love the word texture for this collection. Literally, because there are textures being depicted. But I also find the textural language floating through it quite a bit, too. So yeah tapestry as metaphor just feels like it is both capturing the kind of almost somatic nature of some of the section, but also, I like—Aly, you’re saying—the kind of way that it is also, as an archive, temporal, and just you make it with what you have right then and there. But it can always grow. You can always keep adding to it.

So I like both of those elements of how you’re thinking about tapestry here. Some of the textural language that I’ve noticed that I really, really loved, in—this is in Pau Abustan’s piece on Animal Crossing. They use the language of gentleness and softness. And the comfy and cozy. I love the idea of comfy and cozy as an academic theoretical language, Right? “Gentle, soft, comfy, cozy.” Like I love that that is a way you’re talking about what access intimacy and care feels like on my body. And in my mind. And for my spirit.

Sandie Yi: This is Sandie speaking. I think speaking of being comfy and cozy, one thing that I thought about after skimming through the overall content for this collection, I was really thinking about, wow, this is an amazing collection of recipes. Because when I teach art therapy to my students, a lot of students are like, what materials do we use? How do we use them for, you know, treating specific communities or diagnoses? So it’s really hard to tell students, well, there’s no like one set of recipes. It’s really all—it really all depends.

And the flavors I’m tasting from this collection is that, wow, there’s something for the mind, something for the physical presence, something for the invisible connections that we get to have with our crip siblings. And the collection gave me a lot of ideas, like if—I mean, hopefully God forbid—another pandemic or some sort of crisis happens, like I could see that this is something that we can go back to and see like “look at that, there were projects that people did in a small community where they practiced every day.” So there are a lot of survival skills that we can learn from. And so I feel like this is quite a toolkit for us to imagine things that maybe we don’t know what the future will bring to us.

But think about the collective wisdom and collective connection as, maybe how small or, at the time, how insignificant you feel: they are actually creating more footprints for us to perhaps follow, or perhaps to adapt. And also to have—to fulfill the desire that we have for each other. And I’m thinking about the desire as the nutrients. So what I want to say is the tapestry—I love the visual metaphor of the tapestry—and I would also like to add when I look at the collection, I feel like there’s a visceral fulfillness like oh I’m getting some nutrients to—for me to be restored. And things will happen. Crisis will happen again. And perhaps that I will be able to utilize them or practice some of them, whenever crisis comes.

Theodora Danylevich: That is such an amazing way to put it, and I just so appreciate that, Sandie, thank you.

Alyson Patsavas: This is Aly, I’m struck by the emotionality of hearing you all talk about the section and what gratitude I have to the contributors for giving us such rich material: the generosity with which folks submitted really beautiful, really personal, really intensive, really grief-filled material. 

Margaret Fink: This is Margaret, I don’t want to speculate on behalf of the contributors, but I do think the leaving evidence piece animated a lot of the contributions. And I think I’m trying to approach a way to talk about how the work of documenting what happened is . . . important. I’ll just say that. I’m not sure how to talk about that yet. But I was reflecting a lot about how—I talked about just trying to lean into crip versions of value. Even though I’m very aware of the Disability Cultural Center’s context in the larger university that might measure success differently, and I was noticing that a lot of my sense of failure (but maybe that queer version of failure that I think the “Queer Aut of Failure” piece brought to the surface) had to do with the ephemerality. The fact that we tried this and it was really neat and then it kind of went away and it lived on my phone and your phone. Or it lives kind of in the ether. Nobody recorded it. So I just—I do appreciate that level of the special section. And that level of the contributions. I mean, this is the whole point: leaving evidence. I’m just trying to take some time to slow down and notice how generative that is—or some other language. Maybe somebody else is thinking of a way to talk about it.

Theodora Danylevich: This is Theodora. As Sandie was talking, I don’t know if this is like a bad translation, but when you were saying recipes, I was thinking of like, okay, a care recipe, is that like, you know, a prescription or medicine in a non-negative connotation type of way?

Sandie Yi: This is Sandie speaking. I was really thinking about how—yeah, I mean, one interpretation could be that, like, oh, yeah, we want to kind of go from the opposite of like purely medical model to “Hey, how about we twist the meanings of a recipe, a prescription, and add our flavors on disability culture?” But for me, when I referred to recipe, I was really thinking about how, you know, “this is my grandma’s recipe.” And I don’t have the same ingredients from her generation, or the technique. But I’m going to adapt something that I have. And I feel like because of disability—it doesn’t really only happen within the family. Our disability culture, as a family, it’s so big. And most of us weren’t taught that “this is your crip family.” And so I like to think that we are creating a family together. And there could be our family recipes. And this recipe will be—will have all sorts of flavors and practices.

You know, we can have our cousin’s recipe focusing on autistic experience, or another tribe’s disability recipe for us to really piece out the flavors, based on how you see yourself: the space in which how you see yourself—in your crip bodymind—fit. And also we can model after each other. It’s like, oh, yeah, when I think about how I am going to dress, I may get some ideas from an article. That’s just one other example.

Mimi Khúc: This is Mimi. I want to actually run with both of your metaphors of recipe a little bit—just something sparked for me. Thinking about, okay, if this is a recipe or a prescription or some kind of resource for thinking about how to move in the world, how to survive, how to create care, I love that there is deep grief in the section. Because for me, it makes so much sense that care and survival involve feeling and expressing that grief as fully as possible. I’m thinking of the poem “August 2020” by Jennifer Scuro. I was really struck by that poem, in its smallness. Like it’s describing a very small moment, quiet moment, that is devastating, right? And that for me, that affective place or register makes a lot of sense for what unwellness and pain has looked like. And the necessity of sitting with that and witnessing that. And feeling that. And not pretending that it’s not there or that everything is going to be okay. So I love that that can be—we can think of that, too, as a process of care, as well. Or as a model for care.

Aimi Hamraie: This is Aimi. As I’ve been listening to you all talk about recipes, I’ve just been thinking so much about the form of this. I don’t know if you’re calling it an section or an archive or maybe tapestry is the right word. And the now kind of evolving practice of creating these not typical academic texts and things related. And also thinking about Mimi’s Open in Emergency and the practice of giving someone a box that is full of care and knowledge and history and all of these things. And so I wonder if maybe we could talk about form and design a little bit, too. One of the things I’m wondering—because I’m always talking about disability studies to people who are in fields where the form of knowledge production is usually purely textual—we are maybe a little bit diagrammatic or visual. And, in some way, is there a disability studies norm that is emerging in which our academic contributions also necessarily take on these many different forms and embody practices of care? Is that something that we could pinpoint and say “it’s part of what it means to do disability studies”? So if someone is evaluating the work, let’s say for a tenure file or something like that, that could be a metric for saying yes, this belongs there with all of this other stuff. Or maybe even not that form of evaluation.

Mimi Khúc: This is Mimi. Aimi, I love that so much, thinking about form. And I love your framing of like “Is this a disability studies, disability community necessity?” To have a more capacious understanding of “What does it mean to do those kinds of works on the ground in the community?” And like I think about—you brought up tenure—boo, tenure—you brought up tenure and evaluation. It makes me think there are disability studies books and articles that are super smart and investigate all kinds of things in disability theory, history, and community, but they don’t enact care themselves.

And that’s a question I’ve been thinking a lot about. How are the things we create, even at the level of the academy, not just studied care as object, right, but think about the form so that we’re actually practicing the things that we’re trying to study, as well. That the form can reflect or can enact those commitments, as well.

Alyson Patsavas: This is Aly. I just want to say that I hope this is the world we’re entering. And I feel like so much of disability studies work is about this dreaming and imagining and sort of declaring a future that we want, as we’re building it and as we’re demanding it. And so I love this—and thank you so much for bringing that into the space as we think about how to intentionally name this as part of the project of disability studies work, and certainly this collection has been modeled from folks who have done this very similar work, putting poetry and art practice together.¹⁴ Those of you on this call are here precisely for leading the way to this kind of—for this kind of work. 

Yes and thank you.

And more, please.

Margaret Fink: This is Margaret. I’m thinking about this question of form, and the idea that I think is kind of coming to me out of the submissions to the special section is that there are forms of knowledge that aren’t really commensurate with a sentence that says words. I think a lot of what I have thought about, in the now distant past when I was thinking about image and text, is really interested in that question of “what can different media say that other media cannot really express?”

So I think what we’re talking about is actually that we would as a discipline need to accept other forms of knowledge-making in order to support that insight, which I think is present in some of the work that’s been coming out of the field—and definitely out of this collection. We do need to proliferate the ways that we share understanding. There’s even, I think, people who talk about different forms of thought, like constative thought, where it’s like, you make a statement. It is true. And then there’s other versions of even knowing. 

So I’m excited about some of those questions, and what kinds of form would support even sharing thought that isn’t sayable.¹⁵

Mimi Khúc: This is Mimi, I just want to offer a phrase that I have found really meaningful for— as a possible way of approaching some of the things we’re talking about. This is from a dear friend and colleague, Jim Lee. And he writes in his new book Pedagogies of Woundedness that rigor must be tender. Right? We idealize and value rigor so much in academia. What does it mean to inject tenderness in there? Or use tenderness as a frame for it? Or have tenderness as the goal of that rigorous work? And for me that leads us to possibilities of care in, through our work. Rigor is tender.

Alyson Patsavas: I can think of no better way to end this conversation than that. But thank you, everyone, for your thoughtful and really generous insights on the section’s themes and content of the collection. As a way of wrapping up I was hoping we could collectively invite folks to linger on, meander through, grieve alongside and find solace within the words, images, and theorizing within the “Crip Pandemic Life” collection. Thank you to the access workers who made today possible. 

Glossary 

By Corbin Outlaw, with Theodora Danylevich, Margaret Fink, and Alyson Patsavas. Contributions authored by participants Aimi Hamraie and Mimi Khúc where indicated.

The format of the introductory roundtable lends itself to gestures and references that some readers might want more context for (or definitions of). In order to retain the conversational nature of the discussion, provide a quick reference guide, and make apparent the layers of editing that happen across the time and space of writing, we’ve decided to include these additions in a glossary format here. Time stamps appear in parentheses directly following keywords. These indicate where to find the word in the video conversation. In some cases, contributor names appear in parentheses after a glossary entry; this indicates that they wrote that entry. 

Access intimacy

See 35:48 and 59:00. Access intimacy is a form of intimacy that centers and valorizes access needs. Mia Mingus, in coining the concept, describes it as the “elusive, hard to describe feeling when someone else ‘gets’ your access needs.”¹⁶ This intimacy is not always intentional, nor does it have to involve explicit and active engagement with access work. It is not dependent on disability identity, but is built on an understanding of and commitment to access needs. Access intimacy deepens our connections with others, cultivated through anticipating one’s access needs or navigating through the processes to obtain access; it is “a tool for liberation.”¹⁷

Access labor

See 35:53. Access labor is the work performed in addressing sensory, physical, mental, or cognitive barriers to participation or engagement. This work has always been a part of disability kinship and organizing. Naming this work “access labor” acknowledges the time, energy, and skill sets that such tasks require. 

Before-times

See 15:16 and 31:29. Before-times is a colloquial word describing the pre-pandemic period. The term calls attention to how dominant mindsets, actions, institutions, and institutional practices have radically changed following the pandemic. This term also reflects the ongoing nature of these changes and the pandemic itself. 

Bodymind

See 1:08:36. Bodymind is a word used to describe the mind and body as intertwined. The term “bodymind” rejects a view of mental and physical processes as separate and, rather, draws attention to how they affect and even give rise to one another.¹⁸ Disability studies theorizing of the bodymind views physical, mental, and sensory experiences as synergistic and inextricable. The term has also permeated into activist, communal, and individual spaces and contexts. 

Collective care

See 1:22 and 42:35. Collective care is care that is practiced horizontally, among community members, encompassing practices of interdependence, mutual aid, crip inventiveness, and resource sharing. It can exist on small or larger scales, takes work, and can both deepen relationships and cement community.¹⁹ It is a practice not unique to disability communities, but one that is often central to them. 

Constative thought

See 1:17:04. Constative thought is a thought made up of a straightforward descriptive statement about the world. In context here, it’s opposed to wilder, less summarizable forms of sense-making associated with leaving evidence and disability dreaming.

Crip

Crip is a term that emerges from disability activists, cultural, and community spaces to denote a particular approach to and/or understanding of disability, chronic illness, and non-normative bodymind experiences.²⁰ Crip is sometimes referred to as the radical edge or contestatory contingent of disability community and cultural spaces. Crip is not a static term, but rather “an invitation to community, one that’s built around questioning ableist norms, sharing our lived experiences, and solidarity.”²¹ A reclamation of the derogatory “cripple,” crip also sits in a lineage with feminist and queer theory and intersectional analytics, denoting a particular positionality in relation to power.

Crip knowledge

See 6:43. Crip knowledge refers to the insights, ingenuity, and wisdom cultivated from lived experiences of disability and chronic illness. These insights emerge from and leverage a recognition of the historical and structural barriers that shape disability and illness experiences and are often cultivated in the service of surviving (and thriving through) these barriers.

Crip spacetime

See 7:26. Crip spacetime reflects the ways time and space are influenced by the lived experiences of disability and chronic illness, which can frequently be at odds with normative expectations of one’s relationship to space and time. Margaret Price notes: “I define ‘crip spacetime’ as a material-discursive reality experienced by disabled people, one which is difficult or even impossible to perceive by those not experiencing it.”²² In relation to the pandemic, the disjuncture that many immunocompromised and/or high risk people felt when witnessing celebrations of a “return to normal” while still living in pandemic-heightened precarious conditions can and has been understood as living in/with crip spacetime.

Cripistemologies of crisis

See 6:57. Cripistemologies of crisis are forms of knowledge production that turn to critical disability and chronic illness wisdom as tools to address the conditions enacted by crisis temporalities. Both troubling the notion of “crisis” and acutely aware of its enabling force, cripistemologies of crisis mine the lived experiences for the tools of comfort, survival, and critique used to navigate crisis as a way of life. In doing so, they add a layer to the existing notion of (and ongoing project of) cripistemologies.²³

Dreaming/imagining disability futures

See 2:48; 5:57. Dreaming/imagining disability futures describes the practice and call to action for liberatory change, hope from a crip perspective. Against a cultural and historical backdrop that often denies (both in imagination and in material ways) disabled and chronically-ill people’s futures, disabled activists, theorists, artists, and culture workers have taken up the project of imagining the future in new ways, ways that center disability and chronic illness experiences.²⁴ 

Interdependent cripistemologies

See 34:09. Interdependent cripistemologies is a description of crip knowledges that explicitly names the collective nature of knowledge production. Interdependent cripistemologies also draw out crip forms of knowledge that surround and enable care and mutual need.

Material culture

See 26:26. Material culture is a term from the field of history that describes the tools, crafts, physical objects, buildings, textiles, and other elements at the center of human interaction. (Aimi Hamraie) 

Necropolitics

See 5:25. Necropolitics refers to the formations that target, prioritize, and manage the death of devalued lives. Scholars who have since engaged with necropolitical theorizing focus on the racial, colonial, and ableist motives of these political formations.²⁵ During the ongoing pandemic, the de-prioritizing of intellectually disabled COVID patients for the limited resources of ventilators was a targeted form of necropolitics. Even after the outcry and pushback from disability activists and allies, systems quietly continued to obtain coerced or even forged “Do Not Intubate” medical orders from intellectually disabled people—even when the hospitals were not facing shortages, reflecting both explicit and implicit forms of necropolitics.²⁶

Pedagogy of unwellness

See 12:24. A pedagogy of unwellness is the recognition that we are all differentially unwell, meaning we are all unwell in different ways at different times in relation to differentially disabling and enabling structures. This means we need and deserve differential care at all times. (Mimi Khúc)

Precarity

See 8:06 and 56:37. Precarity is a state of existence marked by uncertainty and insecurity, often the result of structural divestment or abandonment. For example, unstable access to housing, care, community, (capital) employment, medical intervention can result in precarity or preciousness. 

Relaxed performance

See 50:31. Relaxed performance describes a dedicated performance that creates a more flexible, comfortable, or relaxed environment for audience members. Some aspects of a relaxed performance might include (but not limited to) house lights remaining partially lit, lowered volume of any sound, and invitations for the audience to move about the space freely.

Technologies of access

See 28:49. Technologies of access is inclusive of but expansive beyond the concept of “assistive technology,” the term “technologies of access” describes the tools, negotiations, and relations that facilitate accessibility, whether on an individual or collective basis. Examples of the technologies of access include access riders, access information for events, access worker coordination, mutual aid networks, image descriptions, breaks, and plain language. (Aimi Hamraie) 

Acknowledgements

We are particularly grateful to the University of Illinois Chicago’s Institute for the Humanities, whose Humanities Innovation Grants made this conversation possible.