Introduction: Crip Pandemic Life: A Tapestry

This project began with indignation and is entering the world with tenderness—at least, with a tenderness that twines with indignation.¹ In the first few months of 2021, we were wrapping up the final edits of our introduction to the “Cripistemologies of Crisis: Emergent Knowledges for the Present” special section of Lateral’s Spring 2021 issue. That collection of essays had been several years in the making and, thus, long predated the pandemic. Yet, we acutely felt the relevance of the “Cripistemologies of Crisis” contributors’ work to the pandemic moment.² Crisis rhetoric was all around us. Of course, it is hard to deny the collective sense of urgency of the last few years, shaped by the confluences of the global pandemic, growing climate catastrophe, emboldened white supremacy, on-going and newly launched wars and land occupations, and the rise of far-right populism across the globe. Despite its—at times—descriptive value, the exceptionalist undertones of crisis rhetoric can also enact particularly violent erasures of lived experience. In reflecting on the impetus for the collection, Theodora recalled thinking, “What about those of us whose lives and living conditions are constantly cycling through crises? Your crisis rhetoric is insulting to us.” It is insulting because the exceptionalism of such rhetoric invokes a fantasy of universalized normalcy and stability–suddenly interrupted. It is not only insulting, but dangerous in its erasure of and invalidation of the daily lived experiences of entire groups of people. Further, notions of the “unprecedented” nature of crisis produce and elevate many types of professional and institutionally-located experts while invisibilizing and/or making impossible experiential knowledge and expertise.³ Gathering evidence of the proliferation of ongoing, preexisting, and evolving cripistemologies of crisis felt all the more necessary to meet this moment of urgency. And so, we began talking about the need for a space to collect crip pandemic experiences.

As many disabled and chronically ill folks have noted, the earlier stages of the pandemic brought an eerie sense that the crip spacetime so many of us live in–with its isolations, negotiated vulnerabilities, unique temporalities, and ongoing adaptations–suddenly became commonplace.⁴ On the one hand, this created an opening for a recognition of crip crisis knowledge—or perhaps more accurately, a turn to crip crisis competencies, in a particular desire to operationalize crip knowledge.⁵ On the other hand, even as disabled and chronically-ill folks tried to leverage this opening, the emphasis on the moment’s exceptionality tempered many of our hopes that the mass entry into crip spacetime would produce any systemic adoption of anti-ableist policies or practices, much less a sudden recognition of the crip knowledge, wisdom, and value. As Mimi Khúc notes in “Crip Pandemic Conversation: Textures, Tools, and Recipes,” a roundtable that we convened to introduce the collection, “many of us have learned [lessons from the pandemic], but not all of us. And definitely not our institutions.” It felt strange, then, to be working towards the publication of “Cripistemologies of Crisis: Emergent Knowledges for the Present,” knowing the very institutions that needed—and in some cases said they wanted—our knowledge would not create space to cultivate it.⁶ 

The already inaccessible publication pressures and timelines, for instance, ramped up to an even greater degree of inhospitality with the collective sense of urgency, particularly for work on and about COVID-19, to come out in a “timely” fashion. Working from overwhelmed, traumatized, sick, and pained bodyminds, we felt and knew the gap between those who were able to use the pandemic times to produce more prolifically, and those whose reflections and experiences could not “keep pace” with such crisis temporalities. We felt and knew the additional space, time, and care required for our sense-making to unfold. And we knew, because we felt, the always already present risk that crucial disabled, chronically-ill, mad, and neuro-divergent knowledge would be lost due to both the literal loss of life that the pandemic caused and the loss of already precarious places, spaces, and conditions for sharing such knowledge.⁷ In short, the very conditions of felt, lived experience that have produced crip knowledge are the very conditions that the pandemic heightened. Paradoxically, these are the same conditions that threaten to obscure that same knowledge. 

 These reflections led us to propose “Crip Pandemic Life: A Tapestry” as a way to enact, as we understood it, a cripistemology of crisis practice: the creation of a space for disabled, crip, and chronically-ill folks to rest their knowledge and experience. We wrote the following call for papers with this purpose in mind: 

The COVID-19 pandemic has both underscored and amplified the forms of ableism, racism, sexism, classism, xenophobia, and transphobia that measure lives and deaths differentially. As a result, many disabled, chronically, and disabled-adjacent people have found ourselves negotiating intensified levels of grief, precarity, risk, fear, isolation, and anger. Long-tacit necropolitical practices (marking some lives for death) became explicit and institutionalized in medical rationing/refusals of care, reopening plans, vaccine distributions, declarations of the pandemic’s end, and rhetoric positioning deaths of entire generations of communities as acceptable “prices to pay.” The present, in other words, reminds us of how crip futures remain marked by supposedly past eugenic practices and abandonment.

In the face of this dizzying and disorientating reality, many of us (re)turn to community knowledge and shared survival skills to live through this and other ongoing and cyclical crises. Crip knowledge plays a crucial role in sustaining lives, care, and relationality amid state-sponsored neglect. Yet, the conditions of created and perpetuated crises often make such knowledge as precarious as it is precious. In an effort to capture and “archive” these insights, Crip Pandemic Life: A Tapestry takes up a thread from disability justice writer, educator, and organizer Mia Mingus to assemble a collection of evidence and experience emergent from crip lives and life in the pandemic. As Mingus writes: “We must leave evidence. Evidence that we were here, that we existed, that we survived and loved and ached.” A need to gather, hold space for, and preserve evidence—of our angers, our fears, our griefs, our joys, our pleasures, our communities, and our lives—has, for many of us, never felt more urgent. 

And people responded. 

A Tapestry, An Archive, A Collection 

“Crip Pandemic Life: A Tapestry” assembles the responses to our call for crip evidence into a digital collection that will be released across two issues (the second part to appear in Spring 2023). The collection draws on insights from critical disability studies and disability justice to crip both dominant pandemic discourses and scholarship more broadly, embracing knowledge-making across media.⁸ Its scope brings together established, junior, and independent scholars as well as students, artists, and culture workers, weaving together a textured tapestry of experiences that individually and collectively leaves evidence of the lives of disabled people.⁹ The pieces within the collection provide evidence of survival and crip modes of thriving during a pandemic with disproportionate and devastating impacts; evidencing a vibrancy and urgency of crip life and theorizing in the context of the pandemic. To round out these prefatory remarks, we offer below: a note on absences as a presence that shapes the collection, a description of our introductory roundtable, a clustered and annotated list of the individual contributions that appear in this installment, and a closing invocation. 

Even as we embrace the community of contributors who came forward, we acknowledge that evidencing crip pandemic lives through publication, archiving, and curation also requires degrees of access: networks through which to connect, share, and preserve. The tapestry that we lay out in the collection is, thus, marked by the privileges of an academic and cultural network through which our call for submissions was distributed. While it does feature many who occupy tenuous positions within these privileged spaces—students, contingent faculty, independent scholars, artists, and community workers—the absences in the tapestry are notable. The very precariousness of the lives and experiences that our call sought to address falls with particular acuteness on BIPOC disabled and chronically-ill folks. The present installment of our tapestry-archive lacks—and desires—more voices from Black disabled folks; scholars, artists, and thinkers from the global south; incarcerated and/or institutionalized people; refugees; indigenous voices; those disabled by war and climate crisis; and those newly disabled from long-COVID.¹⁰ The silences and gaps of those disabled and chronically ill lives lost and those too sick, too isolated, too pained, or too fatigued to actively offer their accounts, experiences, and wisdom to this collective project also demand acknowledgement. As you go through the collection, we invite you to hold space for these absences and gaps, as they irrevocably haunt and shape our collective experiences. 

We open the issue with an introductory roundtable conversation where we gathered experts whose scholarship, curation, organizing, and artistic work center crip insights and creativity. Participants in the discussion—Margaret Fink, Aimi Hamraie, Mimi Khúc, and Sandie Yi—reviewed the Crip Pandemic Life section in advance. We held the roundtable as a Zoom conversation, during which we invited Fink, Hamraie, Khúc, and Yi to reflect on their work and the pandemic’s impact on it. We then asked everyone to comment on the section as a whole and reflect on what struck or moved them most. “Crip Pandemic Conversation: Textures, Tools, and Recipes,” serves as an affective portal into the collection, our process, and our community. It is also a multimodal archive of the roundtable, including a full videorecording with captions and a transcript,¹¹ and a lightly-edited text-only version of this roundtable conversation. At the end of “Crip Pandemic Conversation,” readers will also find a glossary, a contribution led by Corbin Outlaw, which includes short, contextualizing definitions of words or concepts that appear in the roundtable conversation. Offering video, audio, and textual ways into this introduction sets the tone for the importance of the multiplicities of form found within the section itself. Providing its own type of pandemic evidence, we have left in the awkward zoom moments of unmuted microphones, re-takes, dropped calls, and awkward silences in the audiovisual file and associated transcript. These brief moments aside, the relatively smoothness of the conversation also bears witness to and archives the knowledge of virtual access leveraged and sharpened through the pandemic: the practice of participants announcing themselves when speaking, the care of sharing the space, and the best setup for ASL interpreters. In the introductory roundtable, Aimi Hamraie asks, “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?” As readers choose their preferred way of engaging with “Crip Pandemic Conversation: Textures, Tools, and Recipes,” we invite you to consider how access practices such as transcripts, Zoom recordings, and captions might produce and embody a caring archive. 

The introductory roundtable discusses material that appears in both Issues 11.2 (Fall 2022) and 12.1 (Spring 2023) of Lateral. The first installment consists of fifteen contributions. We have grouped contributions into three rough categories: praxis projects, essays, and creative works. These categories are not mutually exclusive; some praxis projects include poetry and some essays describe praxis work. A number of themes and threads proliferate and interconnect the pieces across these forms, joining into a heterogeneous tapestry, archive, collection of varying textures and affects.¹² Contributions are collectively-authored and single-authored; visual and textual; narrative and fragmentary: linear, recombinant, and accretive. Across categories, contributions include and interleave a number of poems, photographic collage, painting, knitting, sculpture, different types of mask-making projects, as well as reflective essays and transcribed conversations. Readers looking for a more thematic discussion of the collection will find this in the introductory roundtable, as participants draw out the threads of smallness, grief, community-building, tenderness, and pandemic coping tools or, as Sandie Yi describes, “[crip] family recipes.” 

The praxis projects include contributions that offer up evidence of community care practices. For instance, Pau Abustan’s “Surviving and Thriving: Queer Crip Pilipinx Kapwa Dream Worlds in Animal Crossings New Horizons (ACNH)” documents and reflects on a utopic convening and caretaking that took place among crip friends and colleagues in the digital game-world, creating moments of “comfy cozy” solace and joy amid pandemic stress and isolation. Sherri Liska, Katrissa Singer, Emily Gillespie, Sheryl Peters and Patty Douglas contribute “Autistic, Surviving and Thriving Under COVID-19: Imagining Inclusive Autistic Futures—A Zine Making Project by the Re•Storying Autism Collective,” which documents and reflects upon a collective, remote zine-making project that brings together an international community of autistic folks and allies, artists, and kin working toward disability justice. “Coalition-In-Progress: Found Poetry Through Phone Calls with People Labeled/With Intellectual Disability During the COVID-19 Pandemic” describes and evidences the connectivity enacted through phone calls between folks labeled/with intellectual disabilities and research/allies. In doing so, Erin Kuri, Antoinette, A. K., Bill Chase, Cindy Scott, Doreen Kalifer, Harold George Dougall, Kevin John Head, Marie, Nicholas Herd, P. A. I., P. S., R., S. S., Chelsea Jones, and Ann Fudge Schormans provide an invaluable snapshot into community building through digital divides deepened by the pandemic. Each of these projects communicate a defiant sociality in light of pandemic isolation, undoing erasures of social formations emergent from autistic folks and people labeled/with intellectual disabilities. Alison Kopit and Sandie Yi’s “A Dialogue and Reflection about the Masks for Crips Project” stages a reflective conversation between the two authors, interwoven with photographic images, to document their local, disability justice-driven mask-making and distribution project. Julie Dind’s “Personal Protective Purple Daikon Equipment: A Handbook (and an Autistic Manifesto)” exemplifies a tactile and texture-driven engagement with crisis isolation, presenting work that brings together zine, manifesto, and memorial of origami swans with a “how to” guide to making masks stitched from dried daikon peel. There is a time-capsule-like urgency of and for the making of DIY personal protective equipment and masks as artifacts of a fraught moment in the early pandemic, which Kopit and Yi’s together with Dind’s contributions encapsulate in different ways: a disability justice community creation and distribution project on the one hand, and an autistic meltdown cum creative protest art, on the other. 

Essay contributions theorize and reflect on experiences and range from intimate memoir-style accounts to interpretive-analytical pieces, to collective dreaming and critiquing in transcribed conversations: Jessie Male’s “How do you Grieve During an Apocalypse?” shares a devastating and tender tribute that offers an experiential theorization of grief, memoir, and lived moments of disabled kinship. In doing so, Male’s piece demands and refashions the space and time of a memorial refused by pandemic isolations and COVID protocols. On the other hand, Jiya Pandya’s “On Navigating Paranoia, Repair, and Ambivalence as Crip Pandemic Affects, Or, I’m So Paranoid, I Think Your Covid Test Is About Me” poses the question, “what is pandemic theorizing?” Pandya turns to the individual, sensory, physical and psychic modalities of paranoia to chew on “its temporalities, impacts, limits, and alternatives” in ways that draw from and extend scholarship on affect, “ugly feelings,” and reparative work.¹³ S. Cavar’s “The Queer Aut of Failure: Cripistemic Openings for Postgraduate Life” remarks upon and documents an autistic first-year graduate student experience of “Zoom University.”¹⁴ In contrast to and in wry conversation with presumed orientations of failure in relation to remote learning, Cavar insists that pandemic education has “ushered in new queercrip, transMad, ways of knowing and teaching” that offer generative possibilities in need of cultivating. Sohini Chatterjee, Keely Grossman, Rachel Jobson, Kristen Kowlessar, and River Rossi’s “Roundtable: Crip Student Solidarity in the COVID-19 Pandemic” documents crip grad students’ collective grievances and coalitional dreaming of an accessible university, enacting these visions through their accounts of connection, care, and critique. The roundtable participants also play with form to offer multiple entry points into their text by tagging thematic points that run across their conversation, which resists reifying linear reading practices. The multiplicity of graduate student voices that unfolds—both in this roundtable and in conversation with Cavar’s text—also complicates any singular, flattened, or universalized view of “grad student pandemic experiences.” Collectively, these essays model how to write, think, and feel with grief, grievance, paranoia, contestation, and failure for their generativity without revaluing, eliding, or obscuring the complex realities of these experiences. 

Creative works include poetry and visual, sculpted, and crafted contributions. Mick Jones and Dana Fennell contribute a collaborative poetry-and-sculpture dyad, “OCD and Our Thoughts,” shedding light on how COVID prevention protocols brushed up against OCD experiences. Jones’s poem opens with “I’ve been down this road before,” and sits in conversation with the sculpture and with Fennell and Jones’s contextualizing reflection to capture the cyclical features of fear, doubts, and hopes that the pandemic tapped into. Additional poetry contributions include Carmen Cutler’s “Chronic Illness Wisdom is Both/And,” which addresses the knowledge that the chronically ill community has to offer in the context of a mass-disabling pandemic. Cutler’s piece reminds us of the centrality of multiplicity and ambiguity within crip and chronic illness life. Jennifer Scuro’s “August 2020” expresses a small but haunting moment between mother and sleeping child at the height of the pandemic—devastating, as Mimi Khúc puts it in the introductory roundtable. In “Security Blanket: Neuroqueer Knitting in Pandemic Times,” Rebecca-Eli Long documents the process of making a massive knitted blanket, framing it as an expression and validation of autistic joy and defiant autistic meaning-making. Drawing on a queer-feminist understanding of fiber arts as a mode of community- and meaning-making, Long conceptualizes a politicized “neuroqueer knitting” as a rhetorical praxis. Sam Fein contributes a painting, “Overwhelmed,” expressing ways in which isolation served as a particularly triggering spacetime for those with histories of forced confinement and institutionalization. A complement to pieces like Abustan’s and Cavar’s, which detail relief and joy that come from virtual, mediated realms and spaces, Fein’s piece serves as “a really important reminder that we can’t just valorize remoteness,” and that for folks “who have connections to histories of institutionalization, it can actually be really inaccessible or bring up a lot,” as Aimi Hamraie observes in the introductory roundtable. “assembly required: textures of madness, joy, memory,” by Sav Schlauderaff, documents and reflects upon creative work that includes crafting, poetry, photography, and painting, processing C-PTSD and Childhood Sexual Assault (CSA) memories, meditating on mending methodologies. In doing so, Schlauderaff tracks the ongoing, difficult work of (re)assembly required when negotiating trauma—work that for many simultaneously predates, was made possible by, and will outlast the pandemic. For others, the pandemic brought new forms of ambiguity, grief, and/or trauma. Much like the praxis projects, the creative works gathered here offer salves, resonances, and connectivities for making crip sense—and an archive—of these experiences.

Throughout “Crip Pandemic Life: A Tapestry,” objects, poems, images, vivid anecdotal accounts, and conversations make available for us experiences of the textural sensations of making things, the tenderness of grief, the indignation and rage at the devaluation of crip life, and the expansiveness of joy in shared moments of access. They invite community, share wisdom, concretize and archive ephemeral conversations from a very specific moment—when the whole world was fixed into a crip spacetime and yet left it behind as soon as it became possible for some to do so. These contributions, as a tapestry and as an archive, bridge spacetimes and enact coalitional care and evidence. They bring together, in the same frame, institutional and community spaces, scholarly spaces, bedspaces and virtual worlds, memory and dream spaces. This work evidences not only moments in time, but offers a portal for “time-travel,” providing readers and community members with asynchronous access to crip culture and community building.¹⁵ Many of the practices and reflections documented here were crucial to contributors’ survival in the first years of the pandemic. Creating a space for this work to live and connect with new people both honors it and extends that survival work, opening up the potential for community building across time and space. As an animate and affective cripistemological tapestry, the pieces relate to one another and to those who encounter and engage, read, or otherwise come in contact with this collection. 

In closing, “Crip Pandemic Life: A Tapestry” is just a small part of a much larger, collective project of honoring and capturing crip knowledge. It joins a much wider and growing body of work that accounts for (and demands accountability to) disabled and chronically ill pandemic experiences.¹⁶ In joining this effort, we take up the threads woven both by our roundtable participants and by folks like Leah Lakshmi Piepzna-Samarasinha, who describes the urgency of documenting crip survival genius that the pandemic activated and made visible to the world in new (and complicated) ways. We also invite readers to learn as much as we have from the contributors’ pieces by paying particular attention to the multiplicity of genealogies of this collective knowledge that they trace in their work. Our dreams for “Crip Pandemic Life,” are that it offers a space where contributors, roundtable participants, editors, readers collectively witness, grieve, and rage together—a launching point for visioning and creating together in ways that not only allow but welcome “forms of knowledge incommensurate with a sentence that says words,” as Margaret Fink put it in the introductory roundtable. Put another way, we have what Sandie Yi describes as flavors, family recipes, and crisis-coping models.¹⁷ As Aly Patsavas put it, the pieces in this collection dwell together in “dreaming and imagining and sort of declaring” caring archives: We invite you in—to interact, to find solace, to find your family recipes, to reimagine our world.

Acknowledgements 

Noting, collecting, and sharing evidence of disabled and chronically ill lives is, itself, work. It requires time, energy, and security—all things that are privileged resources in the best of times. Working with and from disabled and chronically-ill bodyminds often means working in starts and fits, working with multiple deadline horizons, and recognizing how to communicate these from places of care, vulnerability, and support. We often failed. When we did, we benefited from the crip politics shared by each other, our contributors, and the Lateral team, all of whom met overdue updates, miscommunications, and changed plans with understanding and generosity. 

This project has been generously supported by the University of Illinois Chicago. The Institute for the Humanities “Humanities Innovation Grant” made the introductory roundtable conversation possible, and the “Creative Activity Award” has supported the finalization of the project and efforts to amplify its reach through social media.