With Grief and Joy — Crip Pandemic Life: A Tapestry, Part II

by Theodora Danylevich and Alyson Patsavas    |   Crip Pandemic Life: A Tapestry, Issue 12.1 (Spring 2023)

ABSTRACT     This second installment of “Crip Pandemic Life: A Tapestry” opens with a reflection on transformative access and its visioning work. We weave this discussion through not only the eight new pieces found within this issue, but also through a reflection on the practices of access and care that enabled the writing, editing, and publication process itself. We conclude with two artifacts: The first is the “Accessible Knowledge Production Manifesto” that emerged as a collectively authored set of demands generated at a workshop we held in connection to the launch of our first installment of “Crip Pandemic Life.” The second is a link to a resource list, “Continuing Threads and Proliferations; Crip Pandemic Life Archive,” compiled by Corbin Outlaw, which links out to other pandemic projects documenting crip, disabled, chronically-ill, mad, and neurodivergent experiences, particularly highlighting experiences not captured within our tapestry of crip pandemic life.

From Gathering Evidence to Transformative Access

“Crip Pandemic Life: A Tapestry” started from a call for papers that yielded two special sections across both this and the preceding issue (11.2 and 12.1). The project contains twenty-three pieces (eight of which are found here), two introductions (including this one), and an introductory roundtable. It reflects three years of work, fittingly marking the years of the ongoing pandemic. Through the process of this project—collecting, collaborating, curating, editing, and reading—we have learned a lot. We have learned a lot about access and accessibility across a number of registers, and this has underscored the vital intersections of evidence, access, archive, and culture. As such, we elaborate the evolution of our thinking about the project below, from archiving evidence, to understanding it more deeply through the lens of access work that builds transformative cultural space. 

With our call and our first editorial introduction, we began this project with the commitment to gather evidence, taking up Mia Mingus’s injunction that 

We must leave evidence. Evidence that we were here, that we existed, that we survived and loved and ached. Evidence of the wholeness we never felt and the immense sense of fullness we gave to each other. Evidence of who we were, who we thought we were, who we never should have been. Evidence for each other that there are other ways to live—past survival; past isolation.1 

In reflecting on this collection and project as a whole, the closing line of this oft-cited passage, “Evidence for each other that there are other ways to live—past survival; past isolation” is particularly resonant. In the process of collecting and engaging with the work of “Crip Pandemic Life,” we came to understand the project as a form of cultural access and visioning work. We read Mingus’s words as a call for sites of disability culture-making.. 

In the evolving stages of the pandemic, the chances of moving past survival and isolation for disabled and chronically-ill folks has been variously and acutely imperiled. This reality continues to serve as an impetus for the work of archiving and evidencing crip life, joy, and grief during the pandemic. As our contributors note, even moments where isolation and barriers to survival were temporarily relieved (through things like virtual participation options and state and federal funding increases), these changes were framed as provisional. Indeed, many have been reverted, driving home a retrenched ableism, making isolation more apparent and painful. 

In our introductory roundtable “Crip Pandemic Conservation: Textures, Tools, and Recipes,” Sandie Yi’s comment of “wow, this is an amazing collection of recipes,” set off sparks of recognition among participants (and made its way into our title for the roundtable), as we thought about the implications of this collection as recipes composing and weaving, melding “flavors o[f] disability culture.”2 Reflecting more deeply on this metaphor led us to understand the collection of evidence and creation of an archive as intrinsically also about access—access to culture, identity, validation, and community. For readers and community members, the contributions to “Crip Pandemic Life” compose a tapestry of heterogeneously woven threads of life and of culture that serve as recipes for how to cope, relate, navigate, and exist. In other words, each piece instantiates a synthesis of access and archive. Each piece demonstrates ways to hold space for oneself and one’s community members at the same time as it bears witness to a moment in time, to loss, grief, and to individual and community actions taken in response to these. 

Our work with “Crip Pandemic Life” has made apparent to us that there can be a transformative mutuality of evidence and access in the moment and process of archiving; particularly when creating an archive centered on the values of evidence and access. As Aimi Hamraie describes it, access work is “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.”3 These techniques and tools are, themselves, part of the archival work that we hope “Crip Pandemic Life” contributes to. As such, we include in this introduction not only a discussion of the pieces found within this section of “Crip Pandemic Life,” but also a reflection of the access work we undertook, starting with a recognition: Access work is hard work, and takes time, (physical and emotional) labor, and commitment. For both us as editor/curator/stewards and for the contributors, it requires attention to the material conditions under which intellectual and community-building labor happens as well as to the bodyminds undertaking that labor. Disability studies and composition scholars Brewer, Selfe, and Yergeau argue in their discussion of transformational access that “when access is only a question of texts—products divorced from labor/ers—those individuals seeking access are positioned as consumers, as bodies in need of help from those more abled and privileged.”4 To counter this approach to access, they suggest a clear differentiation between “consumptive access” and “transformational access.” The difference, they contend, lies in shifting from an approach that allows “people to enter a space” to one that questions and rethinks “the very construct of allowing.”5 Through this epistemological shift, transformational access participates in a reshaping and reinvention of culture. This rethinking of access that Brewer, Selfe, and Yergeau invoke, and that Mingus, Leah Lakshmi Piepzna-Samarasinha, and Sins Invalid call for in their writings, requires that we reckon with the relational positions involved in access work.6 It demands a commitment to laterality, mutuality, and an openness to transformation. As we discuss in greater detail below, we have witnessed the effects of such transformative access at work in the paratextual and marginal elements of the collection, and the pieces that run across both sections of “Crip Pandemic Life” bear witness to these transformative, joyful, creative, community-building, and access-archival traces. 

The contributions within the “Crip Pandemic Life” project also detail and honor the labor and experiential expertise often required of transformational access. To attend to this aspect of the work, one thread that we also want to tease out, explicitly, is the autoethnographic process of culture-in-the-making. Autoethnography refers to creative and written work that weaves self-reflection and an accounting of one’s experiences that specifically relate to documenting the way in which a particular culture operates.7 Understanding the contributions to “Crip Pandemic Life” as also necessarily autoethnographic works helps to illuminate the significance of access work and archive creation to disability culture. “Crip Pandemic Life” contributors explicitly and implicitly situate themselves and their experiences, creative work, essays, and/or scholarly activities within and in relation to crip culture and community. The works weave cultural analysis with experience in such a way that they are writing the cultural archive from within—themselves embedded in the cultural tapestry. In one sense, “Crip Pandemic Life” is a cultural time capsule of the early years of the COVID-19 pandemic (2020–21). The voices that responded to the call draw from their experiences and their cultural critique in such a way that the pieces also document crip life and culture that extend endlessly on either side of this period. A transformative access archive (and/as culture capsule) thus at once capacitates, evidences, and requires a centering of disability culture and knowledge production.   

The Pieces

In this issue/installment, readers will find eight contributions to the “Crip Pandemic Life: A Tapestry” collection. We have five essays, which grapple with issues of precarity, harm, loss, grief, and memory work. Alongside this, readers will find three praxis pieces which document issues of access, care work, mutuality, testimony, joy, play, and desire. Of the five essays, two are collectively authored essays. In “Only Together We Flourish: The Importance of Friendship and Care in Navigating Anti-Asian Hate and Shielding During COVID-19,” the alchemy of access intimacy is palpable as Sophie Savage and Denise Wong share how their relationship has sustained them in navigating the early pandemic period full of triggers and traumas for both, involving complex “otherings” and exacerbations of vulnerability.8 In their essay, “The Place and Pace to Remember: Keeping What the Pandemic Has Given Us,” Ria DasGupta, Liz Lopez, and Emily Nusbaum reflect on how their communal memory work during the early pandemic years served as a healing and justice-building process. The three authors reflect specifically on moments of transformative access dreaming with the late Stacey Park Milbern, and elaborate how, in an untenable and deeply ableist context, the methodologies of disability justice—and its ethos of community and culture—offer a space of interdependence and hope. In doing so, they map reimagined relations to academia through an “ethics of pace” and memory work as resistant utopic praxis. Both of these co-authored essays bend the genre with distinctly conversational elements, where each author contributes a distinct self-authored part, which gives an effect of weaving a tapestry of voices and experiences—micro-tapestries within “Crip Pandemic Life: A Tapestry.”

Caroline He, Kim Fernandes, and Hailee Yoshizaki-Gibbons’s individual essay contributions document graduate student experiences, from the coursework stages of graduate study (He), to field work (Fernandes), to the completion of a dissertation and its dedication (Yoshizaki-Gibbons). These essays both document and offer “crip wisdom recipes” of how to live and work as graduate students while grappling with grief, madness, and disability in the context of the pandemic and the restriction of movement and interaction. He’s essay, entitled “600 mg of Lithium, Quarantine, and ‘Third-Spaces,’” theorizes the experience of bipolar II disorder during lockdown in relation to scholarly theories of space, shedding light on the vernacular of “headspace” while also engaging in a radical mad imagining beyond binaries, and beyond the division of private and collective experience. Fernandes’s “For Graduate Students, When the Sadness is Unbelievable: How to Research and Write If We Must Write When the World is on Fire,” engages in a “patchwork” of autoethnography with her fieldwork and “think[s] from grief, engaging with disabled graduate students’ experiences of the pandemic to discuss what it might mean to hold work alongside grief alongside work.” Yoshizaki-Gibbons’s essay, “The Dedication: Life, Death, Grief, and Remembrance During COVID-19,” echoes threads from both of these essays, working through mad discourse and autoethnography while also writing from grief, memorializing an institutionalized elder with whom she engaged during her fieldwork, who died during the pandemic. 

Beyond the essays are three pieces that we have categorized as praxis projects: Bethany Stevens and Sara Palmer’s “Corona Look of the Day,” Aimi Hamraie and moira williams’s “Remote Access: A Crip Night Life Party,” and the crowd-sourced Instagram zine “DISTORIES” are all works that serve as micro-archives in and of themselves, documenting access and care work taken up in the context of the pandemic and crip life and experience. Stevens and Palmer’s contribution documents daily Instagram posts that involve Stevens “serving looks” as a defiant and sexy project of crip pleasure in the face of eugenic discourse and practices around disabled folks. Hamraie and williams’s contribution documents inventive and joyful access-oriented all-virtual and hybrid gatherings and parties initiated and organized by disability culture researchers, designers, and artists, including Kevin Gotkin, charles eppley, Teresa Suh, Finnegan Shannon, Ezra Benus, Margaret Louise Fink, Sasha Kurlenkova, Yo-Yo Lin, Joushua Halstead, and Louise Hickman, in addition to Hamraie and williams. “Remote Access: A Crip Night Life Party” not only documents the parties themselves, but archives many of the access practices that organizers engaged in. Finally, DISTORIES models a different sort of visibility and access. Each chapter of the DISTORIES zine is introduced by a question, gathering a range of testimonies, from painful interpersonal losses and ruptures in trust and community to stories of interdependence and care; from cries of rage to scathing cultural criticism in the shape of specific demands; from expressions of affirmation and solidarity to calls and visions for radical new worlds.

We want to honor the particularly hard work of returning to spaces of trauma for the sake of leaving evidence. For the sake of community, care, and visibility, many contributors to “Crip Pandemic Life” revisited incredibly dark, challenging, triggering times, and some authors share explicitly that they are writing from and through grief. Grief is indeed a building-block of crip world-making, in a generative way. As J. Logan Smilges puts it in a forthcoming book, Crip Negativity, “We can’t change the world for the better until we allow ourselves to feel the depth of our grief.”9 This still does not make it easy, pleasant, or any less triggering to revisit and write, document, preserve, and share this. And yet, it does afford us the opportunity to be together—as Sophie Savage and Denise Wong cite from Mingus’s blog post-essay on access intimacy—“knowing that someone else is with me in this mess.” 

Accessible Publishing 

In the same spirit of collaboration and collectivity that runs throughout “Crip Pandemic Life,” we turn now to a discussion of a workshop that we held in February 2023. With our ongoing collaborator, Margaret Fink, we held a hybrid Accessible Publishing Workshop where we invited folks to a discussion about access and institutional barriers within knowledge production. Hosted by the Institute for the Humanities at the University of Illinois Chicago and supported by Corbin Outlaw, we used the first special section of “Crip Pandemic Life” as a launching point to lay out and grapple with some of the challenges of integrating access and care practices into academic publishing and editing. We invited participants to consider questions of power, privilege, accountability, conflicting access needs, and survival within academia across varying institutional roles. We approached the questions that these challenges raise from a presumption of desire: desire for care and access, and desire to create practices that open more space for disabled and chronically ill writers, artists, and activists who want and/or need their work to circulate within academic journals. 

The infrastructure of academic publishing is just one of the many mechanisms that shape and limit who enters, survives, and thrives within higher educational spaces. As such, it is a key space where ableism (along with overlapping and intersecting forms of oppression) operates. Disabled and chronically-ill people and our allies working across disciplinary and institutional spaces continue to bring access practices into greater visibility to address these barriers in the service of creating and holding more space for disabled, sick, and mad thinkers and knowers.10 Yet, as disability studies scholar and rhetorician Jay T. Dolmage notes, “The steep steps of higher education will not easily be torn down or ramped over.”11 Academic ableism has deep roots, and working against it is an ongoing, collective process.The goal of our workshop, then, was to dream, collectively, about the practices that have and will enable more folks to submit their work and see that work through a peer-review and publication process. In short, we sought to hold space for resource-sharing, collective demand-making, and plan-making for how to enact those demands. 

We began the workshop by sharing some of the steps we took to center access in our editorial work and the lessons we learned in the process of publishing “Crip Pandemic Life.” That discussion led to a conversation about the experiences that workshop participants have had with academic publishing and/or receiving feedback about their work. We asked folks to reflect on the work that they wanted scholarly publishing to accomplish and what access in knowledge production looks and feels like. We split up into smaller groups (several zoom rooms, and those in the physical space worked as a group). We invited everyone to take notes on a shared google doc and came together to report back on some of the brainstorming that took place in our breakout rooms/spaces. We then crowdsourced a working document that captured these reflections and shared strategies for addressing access barriers within publishing, writing, curating, and producing knowledge. The workshop culminated in a list of questions and demands for scholars, editors, publishers, and institutions (or, more specifically, those responsible for setting academic institutional policies) to consider in their work. Below, we reproduce (and add to) our opening comments, workshop questions, and these collective demands as a means of archiving that discussion and amplifying the access visioning work that happened within the workshop space. 

On Editing “Crip Pandemic Life”

At the end of the day, a collection edited by two disabled and chronically-ill people required a much more interdependent process, as we navigated various bodymind crises and flares, respectively. This meant that at different times and for different components of the project, we stepped in for each other. Add to this, a set of explicitly solicited and variously disabled contributors, and we found ourselves working with multiple and expansive deadlines for both ourselves and our contributors. Further, the ongoing pandemic context has made (and continues to make) the unremunerated exercise of peer review even more fraught: there were less people with the capacity to do peer review, and many folks with the expertise to review our collection were feeling the strains of crip pandemic life themselves.12 We took, and offered, more time, many times. 

Thanks to the flexibility of the team at Lateral, we negotiated some of the more immutable timelines that the journal is obliged to keep to and we ultimately split our collection across two issues. This enabled some of our contributors—and peer reviewers—who needed more time to have it. In reflecting on the process of negotiating these deadlines and extensions, we are reminded of the observation, made by James Kyung-Jin Lee and shared with us by Mimi Khúc in “Crip Pandemic Conversations” that rigor must be tender.13 Flexibility and generous review and editing deadlines are one way we hope that this tenderness found its way into the process of supporting the rigor of the work. 

Yet, we feel it important to also name some of the ways where our aspirations to implement this flexibility ran into challenges. At the risk of stating the obvious, the process of moving pieces through the submission, editing, reviewing, and publication stages involves a lot of people. Managing or moving deadlines in one place within this chain of operations impacts others. We eventually ran out of time, and we struggled, at times, to reserve some of this tenderness for ourselves. We set a three-day window to read finalized pieces for the first issue, a window that coincided with conference travel commitments and put us both in the position of “super-cripping” the final stages of our work in ways that felt counter to the ethos of the project.14 While the Lateral team met our final push to get the first special section to print with nothing but generosity and willing flexibility, we also know that the labor on their end was equally compressed. We inadvertently borrowed time from one end of the publishing timeline to support another, and we stretched ourselves and others as a result. When disabled and chronically-ill folks are working at multiple points within the publication chain—something we undoubtedly want to see more of—the balancing of needs and capacities gets more complicated and requires more resource sharing, strategizing, and open conversations about the labor of and within publishing. This resource sharing is all the more crucial within the labor conditions of academia and (most) academic publishing, where any “extra” time required to carve out spaces for flexibility and access is tacitly understood as labor done out of “love,” “commitment,” and “passion” rather than anything that would require structural support.15 At the same time, we affirm that this has been a labor of love—solidarity and access as love (Mingus); and care work (Piepzna-Samarasinha), where the very rhetorical linking of care and work by Leah Lakshmi Piepzna Samarasinha demand a different cultural orientation towards this type of work.16 

The collection of essays, creative works, and projects within “Crip Pandemic Life” also required a more flexible approach to editing and peer-review processes. Thinking about the placement of creative work next to theoretical texts and descriptions of pandemic projects felt like curation as much as editorial work. We learned from and relied on the expertise of Sandy Guttman, a Chicago-based curator and cultural worker, to help bridge over our lack of experience in this type of work.17 Some of the contributions also blended styles or genres of writing, not falling into squarely scholarly or personal-essay conventions. This required identifying modes of narrative and citational politics that were ethical, caring, and accountable. We were mindful, for instance, that some pieces required more citational depth than others and sought to balance a commitment to honoring genealogies of ideas without enforcing scholarly demands for citationality on pieces that fell more into creative practices or blended genres.18 

We understood and approached this editorial work as components of access work. Disabled and chronically-ill thinkers and cultural workers often have to or prefer to experiment with and work across genres, methods, or techniques in our work because of the unique needs of our bodyminds.19 Therefore, knowing how to support the evaluation of this work through the peer-review process is a necessary part of holding space for crip knowledge production. It is also a part of the process that, we admit, was one of the most challenging to navigate.20

Finally, creating space for artists, activists, and interdisciplinary scholars to share their work requires anticipating and welcoming readership from similar positionalities and experiences. Intentionally thinking about a broader readership for work that showcases artists, activists, and community work ensures we are not inviting folks into inhospitable and/or inaccessible academic spaces in extractive ways. To this end, we integrated feedback on accessible language and text-navigation into our editorial suggestions by encouraging explicit roadmapping, concept definitions, and the use of subheadings. All contributors provided alt-text descriptions of any visual material, and we encouraged content flags for potentially triggering aspects of the contributor’s work. We also secured funding for and time in the lead-up to the publication for a screen reader user to test the navigability of the collection. An institutionally-supported digital accessibility expert also provided invaluable consultation support in our publication of the issue. 

The inclusion of “Crip Pandemic Conversations: Textures, Tools, and Recipes” as a conversation was another example of thinking broadly about readership and building flexibility into the form of the issue. Scholars and creative knowledge-producers participated in a recorded roundtable conversation. By posting the entire recording, along with captions and an unedited transcript, we offered several possible entry points into the collection for our readers/viewers/listeners. For those who might prefer a smoother text-based or text-only experience, we also rendered a lightly edited version of the transcript. 

In reviewing the conversation, we also realized that the embeddedness of each of the participants within disability studies, disability culture, and/or disability justice work meant that the discussion reflected a shared vocabulary that some of our readers/listeners/viewers may not be familiar with. Shorthand and expert language can simultaneously present barriers and reflect a precious expertise worth retaining, particularly within fields that centralize minoritized subjects. Calls to centralize access in knowledge production do not preclude the use of expertise, insider language, or concepts that have rich, complicated, and/or contested histories. Thus, we created a glossary of key terms for audiences who may not have experiences with or access to the bodies of work that the conversation (or the collection as a whole) gestures towards. 

We asked Corbin Outlaw, who led this effort, to reflect on their work during the workshop. They shared the following: 

Ultimately, we wanted to complement, consider, and care for the many ways of knowing (or not-knowing), crip and otherwise. We set out to use the glossary to create or shape a space for a freedom or flux of knowledge based in or inspired by discussions of what care means (or can mean) in spaces of knowledge production. 

I like to talk about how things “feel” and for me, this glossary is like a waterbed, or a big bean bag chair to sit in while you read or listen. There was a lot of intentionality with drawing from practices like plain-language, and an active practice of a crip citational politic. 

The creation of the glossary was also an extremely collaborative process of knowledge production, drafting and finalizing and citing the glossary, as we all located these terms in conversation as well as in current and past discourses, and through our own scholarly work and experiences. A lot of it felt like almost a scavenger hunt through overlapping epistemologies and was honestly pretty fun.

We wanted to be clear and intentional in tracing the genealogies of knowledge and honoring work that has been done, while at the same time developing the glossary as a clear entry point for readers, which means that it operates as an incomplete thing. By nature, the glossary is tied temporally (figuratively and literally to the issue and discussions happening several months ago), but imagined as an endlessly experiential unraveling of an archive (we hope).

Part of the collaborative process that Outlaw describes involved asking contributors who used terms in the conversation to weigh in on the glossary definitions. We also included time stamps to link to in the glossary terms so readers can return to the video to hear terms discussed in context. 

The efforts that we trace here are just some of the ways readers will find evidence of access and care within “Crip Pandemic Life.” Our contributors present a range of collaborative projects that model innovative forms of producing, capturing, and sharing crip knowledge. From roundtables to memory-work, zine-making, found poetry, social-media archives, and descriptions of night-life parties, we want to underscore the ways that crip pandemic life has both relied on and occasioned crip innovation which, among other things, has contributed invaluable access knowledge, practices, and visioning. It is through our aim to further explore and experiment with the culture-shifting capacity that conceiving of access work as also knowledge production (and vice versa) that we also asked our workshop participants to share some of their experiences, concerns, and dreams for the future of access in academic publishing. We pulled these thoughts together, added a few of our own, and present them here in manifesto form. We hope readers will find this list of demands and visioning as generative and energizing as we do. 

Accessible Knowledge Production Manifesto 

By Margaret Fink, Theodora Danylevich, Alyson Patsavas, Corbin Outlaw, Beth Bendtsen, Jennie Brier, Sydney Erlikh, Erin Gizewski, Lieke van Heumen, Kate Jirik, Clare Mullaney, Tirza Ochrach-Konrad, Lisseet Perez, Sheryl Peters, Bailey Szustak, Claire Van Den Helder, and all of those who took part in the conversation anonymously. 

Accessible knowledge production is flexible timetables. 

Accessible knowledge production is the availability of support in the planning for and managing of deadlines. 

Accessible knowledge production is creating, holding, and protecting space for slow scholarship. 

Accessible knowledge production is valuing process over product. 

Accessible knowledge production is valuing experiential knowledge. 

Accessible knowledge production is integrating practices of care throughout the writing and publishing process, including structural support, mentorship, and concrete commitments to accessibility. 

Accessible knowledge production is substituting plain language summaries for abstracts.  

Accessible knowledge production is valuing work and expertise both financially and through anticapitalist practices (community-building, care labor, and other non financial supports). 

Accessible knowledge production is creativity and flexibility of form. 

Accessible knowledge production is understanding conversations, art, artist talks, digital storytelling, poetry, zine-making, and performances of everyday life as knowledge production. 

Accessible knowledge production inclusive research teams with co-researchers who identify as having intellectual and developmental disabilities. 

Accessible knowledge production is the security and privileges of tenure-track lines extended to non-tenure track positions. 

Accessible knowledge production is shared tenure-track lines. 

Accessible knowledge production is disabled and chronically-ill people on editorial boards, implementing practices that support other disabled and chronically-ill people. 

Accessible knowledge production is dismantling structural oppression within the creation, publication, and distribution of knowledge. 

Accessible knowledge production is knowledge produced by, for, and with communities impacted by that knowledge. 

Accessible knowledge production is valuing the work of knowledge translation and amplification.

Accessible knowledge production is building infrastructures that support interdependent scholarship.  

Accessible knowledge production is attention to and support for the labor that enables access. 

Continuing Threads and Proliferations: Crip Pandemic Life Archive

Finally, in the editorial introduction to our first installment, we noted some palpable absences in the collection. We wanted to address this with more than just words. The following link takes readers to a list of resources that seek to amplify, honor, acknowledge, and make visible projects and works by groups that weren’t well-represented in the submissions we did receive and curate within the “Crip Pandemic Life” project. This list is by no means exhaustive. We chose to house it in a Google Doc to allow for additions and welcome anyone to make “suggestions” within the document to add their resources. The pandemic goes on. The need to archive the experiences and knowledges of disabled, mad, chronically-ill, neurodivergent and crip lives goes on. 

Crip Pandemic Life Continuing Threads and Proliferations

Acknowledgements

Like all scholarship, this tapestry-archive-project was supported by a team of collaborators. “Crip Pandemic Life” would not have been possible without Sandy Guttman’s expertise in accessible curation and her participation in the earlier stages of conceptualization and planning (not to mention indispensable work in processing submissions as they first came in); “Crip Pandemic Life” owes its existence also to Margaret Fink. In addition to her role as the Director of the Disability Cultural Center and co-PI on the grants that funded this project, Margaret lent her expertise throughout the writing, editing, and publishing process. Corbin Outlaw’s work as the graduate assistant on the project was invaluable and included everything from citation checks to the substantive contributions of both the glossary and the Google Doc resource guide. Margaret and Corbin both acted as access doulas throughout the project (including their work on both the workshop and the “Crip Pandemic Conversations” discussion.21 We also want to acknowledge and thank the Lateral team for their willingness to dream and enact “Crip Pandemic Life,” and for their patience with our process. To our contributors—all of them across both issues—we would like to express our deep reverence for your care, and honor the varieties of pain involved in (first, living, then) generating and conveying this content into our stewardship.

Notes

  1. Mia Mingus, Leaving Evidence (blog), https://leavingevidence.wordpress.com.
  2. Alyson Patsavas, Theodora Danylevich, Margaret Fink, Aimi Hamraie, Mimi Khúc, Sandie Yi, and Corbin Outlaw, “Crip Pandemic Conversation: Textures, Tools, and Recipes,” Lateral 11, no. 2 (2022): https://doi.org/10.25158/L11.2.6.
  3. Patsavas, et al., “Crip Pandemic Conversation.”
  4.   Elizabeth Brewer, Cynthia L. Selfe, and Melanie Yergeau, “Creating a Culture of Access in Composition Studies,” Composition Studies 42, no. 2 (2014): 151–54; http://www.jstor.org/stable/43501861. Similarly, Mia Mingus offers the conceptualization of liberatory access as something that is radically transformative, and specifically, culturally and socially transformative where and when “access can be a tool to challenge ableism, ablebodied supremacy, independence and exclusion.” Mia Mingus, “Access Intimacy, Interdependence, and Disability Justice,” Leaving Evidence (blog), April 11, 2017, https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/.
  5. Brewer, Selfe and Yergeau, “Creating a Culture of Access,” 153–4.
  6. Mia Mingus, “Access Intimacy, Interdependence, and Disability Justice,” Leaving Evidence (blog), April 11, 2017, https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/, Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018), Sins Invalid, Skin Tooth and Bone: The Basis of Movement is Our People, 2nd ed. (Berkeley: Sins Invalid, 2019).
  7. See, for example, Carolyn Ellis, Tony E. Adams, and Arther P.  Bochner,  “Autoethnography: An Overview,” Forum Qualitative Sozialforschung / Forum: Qualitative Social Research 12, no. 1 (2010): https://doi.org/10.17169/fqs-12.1.1589. These scholars offer a helpful overview, drawing on Clifford Geertz’s The Interpretation of Cultures, Bud H. L. Goodall’s Writing the New Ethnography, and bell hooks’s Teaching to Transgress: Education as the Practice of Freedom, among others.
  8. Mia Mingus, Access Intimacy: the Missing Link,” Leaving Evidence (blog), May 5, 2011, https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/.
  9. This is an excerpt from Smilges’s forthcoming book. J. Logan Smilges, Crip Negativity (Minneapolis, MN: University of Minnesota Press, 2023).
  10. Toolkits and resource guides for integrating accessibility into event planning, curricular practices, and evaluation tools continue to evolve and circulate. In hosting this workshop (and describing it here), we wanted to bring these conversations into the realm of academic publishing. See, for instance, Aimi Hamraie and Kelly Fritsch, “Crip Technoscience Manifesto,” Catalyst: Feminism, Theory, Technoscience 5, no. 1 (April 1, 2019): 1–33, https://doi.org/10.28968/cftt.v5i1.29607; Ann Fox, “How to Crip the Undergraduate Classroom: Lessons from Performance, Pedagogy, and Possibility,” Journal of Postsecondary Education and Disability 21, no. 1 (2010): https://files.eric.ed.gov/fulltext/EJ888643.pdf.
  11. Jay T. Dolmage, Academic Ableism: Disability and Higher Education (University of Michigan Press, 2017), 190.
  12. At the same time that we critique the problematic cultural/structural undertones that inform these categories of “labor of love,” we are grateful to the community of reviewers who supported this collection and know that labor was one of solidarity and offered with care.
  13.   “But rigor can be—and, indeed, must be—tender.” James Kyung-Jin Lee, Pedagogies of Woundedness: Illness, Memoir, and the Ends of the Model Minority (Philadelphia: Temple University Press, 2022), 24.
  14. The supercrip is a cultural figure that represents and reproduces the disability stereotypes of inspiration, where the disabled person (or character) overcomes the limitations that their disability or impairment presents; see Jay Timothy Dolmage, Disability Rhetoric (Syracuse, NY: Syracuse University Press, 2014), 35.
  15. Again, we want to be super clear here that the editorial collective of Lateral has modeled an approach to academic publishing that counters this rigid view of access and flexibility. The compressed timeline led to less space for our own access needs, instantiating the structural and institutional culture of rigidity and non-tender rigor. This is a scenario in access work that plays out frequently within disability community spaces. We hope that naming and talking about it opens space for collective conversations about balancing complex access needs and learning how to not internalize these failures as problems of self-management but structural issues.
  16. Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018); See also Akemi Nishida’s discussion of care practices and her theorization of “just care”; Akemi Nishida, Just Care: Messy Entanglements of Disability, Dependency, and Desire (Philadelphia: Temple University Press, 2022), 7.
  17. Sandy worked with us in the early stages of the project and we regretfully did not note her contributions in our introduction to the first special section. We want to take the opportunity to amplify Sandy’s work here by noting that she and Todd Garon recently opened a gallery space in Chicago called Curb Appeal. If you find yourself in Chicago, please visit their gallery space;  “Home,” Curb Appeal Gallery, accessed April 4, 2023, https://www.curbappeal.gallery/home. The following article also describes the deliberate work that Guttman and Garon have done to build access into their gallery and highlight the work of disabled artists as well as to build disability culture; see Hannah Edgar, “Curb Appeal, a New Apartment Gallery, Brings Access to the Fore,” Chicago Reader, March 17, 2023, https://chicagoreader.com/arts-culture/curb-appeal-a-new-apartment-gallery-brings-access-to-the-fore/.
  18. We are extremely grateful to our reviewers for their expertise during the evaluation process to help us and our contributors navigate this aspect of the review process.
  19. We are particularly grateful to have learned from Carrie Sandahl’s work and leadership in disability arts and cultural spaces, including her work with Carol Gill on the barriers disabled artists face when their work crosses mediums and genres due to things like disability progression. This can create specific barriers to funding, professional development, and skill-building. See Carol Gill and Carrie Sandhal, “Arts Careers Outcomes and Opportunities for Americans with Disabilities: A Qualitative Study” (Conference Report, National Endowment for the Arts National Summit on Careers in the Arts for People with Disabilities, July 8th, 2009), https://artsedge.kennedy-center.org/2009neasummit/papers.html.
  20. This process often felt like it relied on knowledge gained through informal networks and mentoring relationships, further underscoring the importance of openly discussing how to build networks of crip and critical disability mentorship. Here, we want to draw attention to the recently launched project, Society of Disabled Oracles, a project by Alice Wong, Aimi Hamraie, and Jen White-Johnson. Though academic publishing is not the target intervention of this group, the project names the importance of crip wisdom and disabled mentorship and provides a platform to share that knowledge. See, Society of Disabled Oracles, 2022, https://societyofdisabledoracles.com.
  21. An access doula is a role that has emerged in disability culture, where a community member takes on a supportive role to facilitate access—this can take quite a range of forms.

Author Information

Theodora Danylevich

Theodora Danylevich is a scholar of American Literature and Disability Studies and also teaches first year writing. Her book project conceptualizes "[Sic]k Archives" and explores crip worldmaking and/as reproductive justice through a literary-historical lens. Their scholarly writing has appeared in Lateral, Rhizomes, Journal of Bioethical Inquiry, and Journal of Literary and Cultural Disability Studies.

Alyson Patsavas

Alyson Patsavas is Assistant Professor in the Department of Disability and Human Development at the University of Illinois Chicago (UIC). Her scholarship is situated at the intersections of disability studies, queer theory, and feminist theory and focuses on cultural discourses of pain, disability, and crip epistemologies, as well as representations of disability and chronic illness in popular culture. Patsavas is a writer and producer on the documentary film Code of the Freaks (2020). Her work has appeared in the Journal of Literary and Cultural Disability Studies, Somatechnics, Disability Studies Quarterly, Crip Magazine, Feminist Wire, the Czech Sociological Review, and Lateral.