Crip Time and Radical Care in/as Artful Politics

Abstract

This article brings together critical disability scholarship and personal narrative, sharing the author’s pandemic story of disruption, caregiving, grief, burnout, cancer, and post-operative fatigue. It offers critical reflection on the limits of the neoliberal academy and possibilities for practicing liberatory politics within it, posing two central questions: What does it mean to crip time and centre care as an arts-based researcher? What might a commitment to honouring crip time based on radical care do for the author and their scholarship, and for others aspiring to conduct reworlding research? This analysis suggests that while committing to “slow scholarship” is a form of resistance to ableist capitalist and colonial pressures within the academy, slowness alone does not sufficiently crip research processes. Crip time, by contrast, involves multiply enfolded temporalities imposed upon (and reclaimed by) many researchers, particularly those living with disabilities and/or chronic illness. The article concludes that researchers can commit to recognizing crip time, valuing it, and caring for those living through it, including themselves, not only/necessarily by slowing down. Indeed, they can also carry out this work by actively imagining the crip futures they are striving to make along any/all trajectories and temporalities. This means simultaneously transforming academic institutions, refusing internalized pressures, reclaiming interdependence, and valuing all care work in whatever time it takes.

1. Introduction

This article is full of disclosures, all of them vulnerable. As María Elena Cepeda suggests, being a tenured academic comes with a responsibility, “a moral obligation,” to disclose the ways in which, as disabled academics, we experience academic institutions as further disabling (Cepeda 2021, p. 312). She advocates for us to disclose “because [we] hold the potential to propel us past the current framework of invisible disability … as individual aberration and ‘problem’ to a more collective approach” (Cepeda 2021, p. 316). I hope my own disclosures might help, somehow, in ditching damaging frameworks and working toward collectivity and compassion.

I share my own pandemic story of disruption, caregiving, grief, burnout, cancer, and post-operative fatigue, as a kind of artful praxis—wherein critical disability theory meets personal narrative—with the hope of thinking through both the limits of the neoliberal academy and some possibilities for holding onto the liberatory politics within it. In reflecting on my own changing bodymind1 and, by extension, my changing understanding of crip time and radical care, I draw together my lived experience with brilliant scholarship (e.g., Kafer 2021; Meyerhoff and Noterman 2019) to offer insights for navigating community-based, arts-based, and/or storytelling research in these complicated times.

By crip time, I mean the non-linear, unpredictable, ever-changing, or multiply enfolded temporalities of being disabled (Kafer 2021). I understand these shifts in tempo as necessary in order to survive, resist, and transform abled modes (Samuels 2017; Krebs 2022). By radical care, I mean the practice of taking care of ourselves as interwoven with taking care of each other (Piepzna-Samarasinha 2018a); this valuing of interdependence confronts the individualism at the core of capitalism and its self-care industry.2 Crip time and radical care are co-creations of crip existence, necessary for both survival and transformative reworlding toward just, livable, crip, decolonial, anti-capitalist futures (Hobart and Kneese 2020; Piepzna-Samarasinha 2022). I understand reworlding as generating alternative ways of being, knowing, and relating, outside of existing colonial structures, and making future worlds in the present moment through the ways we relate, imagine, and act (Carter et al. 2018). Reworlding research reaches toward making the next world through practices of sharing stories, listening, and visiting, in old and new ways.

A queer settler of Jewish ancestry in my late 40s, I have been a Canada Research Chair (CRC) in gender studies at Trent University, located in Michi Saagig Anishinaabe territory (currently known as Peterborough, Canada), for almost a decade.3 The focus of my CRC is leading Aging Activisms, an intergenerational activist research collective seeking to challenge capitalist, colonial, ableist understandings of aging, futures, and social change (Chazan 2020; www.agingactivisms.org, accessed on 12 December 2022). With a team of dedicated academics, students, and community researchers, we facilitate arts-based and storytelling workshops, centring the experiences of local changemakers who are most often omitted from academic study due to being racialized, Indigenous, gender-diverse, LGBTQ2IA+, and/or disabled.

As a methodological inquiry, Aging Activisms strives to resist extractive practices, cultivate care, and circulate critical counter-normative stories. It is built on “slow scholarship”—a revolutionary tempo change that encourages building relationships of care against neoliberal academic currents and capitalist, colonial, ableist temporalities of productivity (Meyerhoff and Noterman 2019; see also Cole 2019)—as well as on notions of crip time, valuing multiple temporalities as resistance to ableist norms (Kafer 2021). In building Aging Activisms as a (then/temporarily) able-bodied person, I often equated slow scholarship with crip time, understanding both as necessary ethical–political commitments in anti-oppressive research. While these concepts have been part of my work since long before COVID-19, my understanding and practice of them have changed.

Specifically, I circle two scholarly questions in this article. First: what does it mean to meaningfully crip time and centre care as an arts-based researcher in uncertain and tumultuous times? In the past, we slowed the pace of Aging Activisms to care for participants, but not necessarily in ways that allowed us to care for ourselves (i.e., myself or my research team); there are indeed institutional barriers to practicing such radical care. Through isolation and illness, I have come to believe that while slowness is necessary, it alone cannot sufficiently crip our processes. Like Alison Kafer, I am learning “how easily crip time has been reduced to, narrowed to, more time—more time as a way of mobilizing disabled people into productivity rather than transforming systems” (Kafer 2021, p. 419). Kafer challenges us to examine the insufficiencies and complexities of slowing down, the possibilities for harm and exploitation, and the question of “what crip time does.”

Kafer’s reflection frames my second question: What might a commitment to honouring crip time based on radical care do for me, for Aging Activisms, and for others aspiring to reworlding research? In telling my story, I explore what I have been learning: that crip time is not something we commit to; it is something imposed upon (and perhaps reclaimed by) us. However, we can commit to recognizing it, valuing it, and caring for those living through it, including ourselves. In doing so, I believe we are called on not only/necessarily to slow down, but, collectively, to actively imagine the crip futures we are striving to make along any/all trajectories and temporalities available to us. We are challenged to simultaneously transform academic institutions, refuse our own internalized capitalist–ableist pressures, reclaim interdependence, and value all care work in whatever time it takes (Cepeda 2021; Medak-Saltzman et al. 2022; Krebs 2022).

I am a changed person from the one who embarked on an academic career a decade ago, and even from the one who proposed to be part of this Special Issue last year. So many of us are struggling from the fallout of this mass-disabling and alienating pandemic (Barbarin 2021). I find myself unable to “return to normal” following clinical burnout, breast cancer, and multiple pandemic upheavals (Krebs 2022). I struggled to even write this article as I am often horizontal or experiencing brain fog. Writing this was only possible with the support and care of my long-time research assistants (RAs), Melissa Baldwin and Ziysah von Bieberstein, who offered discussions, literature review, editing, and transcription of my voice memos. Like others, I am re-committing to crip, queer, decolonize, and unsettle my own research practices, creative pursuits, and artful politics (Changfoot et al. 2022; FitzGibbon 2021). I am doing my best to refuse the capitalist aspiration of “return”, often “breaking time” by collapsing into a nap, allowing my students to rest, leaning on trusted relationships, keeping my mask on in public, or avoiding large events (Cepeda 2021). I commit and refuse in these ways because “I want freedom and survival for all of us” (Cepeda 2021, p. 307).

2. Aging Activisms in the Before-Times

By just visiting—mawadisidiwag // they visit each other—we are already doing and making in important ways.

(Miner 2019, p. 133)

In the years leading up to the pandemic, I was learning about the complexities of slowing down, about crip time and radical care. Between 2015 and 2019, my research team led seven research arts-based and storytelling gatherings, bringing together multi-age groups of artists and activists to share, listen, eat, and create together. We facilitated embodied theatre workshops, music-making, poetry-writing, zine-making, collage, and art installation co-creation. This led to hundreds of creative pieces and dozens of “media capsules,” short videos that captured intimate group storytelling processes, collectively offering an oral history of social change in our community.4

These events focused on relationship-building that reverberated into the world in many generative ways (Chazan 2020). We spent time caring for participants before, during, and after each workshop with a ratio of one facilitator to every two or three participants. In addition to carrying the heart-work of the project, research tasks included facilitating, documenting, making tea, listening attentively, ensuring access to food, supporting accessibility needs, arranging participants’ transport, strengthening relationships with and among participants, and attending to complex group dynamics, emotions, and energies. We also collaborated on participants’ endeavours in the broader community, including symposia, seminars, rallies, teach-ins, film screenings, and poetry readings.

Slowing down to centre community care was meaningful, rewarding, even transformative. Participants reported a sense of connection and validation. Many contrasted the care and slow listening in our project with the extractive, contractual, and/or time-pressured encounters they experience in other community spaces (such as meetings, events, workshops, etc.). Participants’ reflections suggested that this slowing-together became a collective practice of sowing-together, making livable futures in real time at the micro-scale of our gatherings (Carter et al. 2018; Miner 2019).

The project had challenges, of course; most significantly, its uneasy fit within an academic institution. I preface this critique by crediting the CRC position at Trent University. When I began in this role, I was parenting a still-nursing one-year-old and an autistic five-year-old. By funding my research and research time (affording me a reduced teaching load) for ten years, the CRC allowed me to undertake slow, care-centred research and to simultaneously prioritize care in my family/community, even if neither were always easy to justify. Still, working and parenting together is a more-than-full-time job. And, working explicitly in feminist scholarship, it was never lost on me that I was managing the ever-expanding, often-gendered, dual-load of caretaking both within academia and working-motherhood (Medak-Saltzman et al. 2022; Mitchell-Eaton 2020).

There were institutional challenges that I faced even before COVID-19. In short, academic structures and funding policies are not designed to support care-centred scholarship; choosing this path comes with costs—mostly for me, but also for my research team (FitzGibbon 2021). For example, as part of an activist research practice, I directed much of my research funding to the community via honoraria, food, paid positions, gifts from local vendors, sponsorships, etc. This meant justifying “non-traditional” research expenses that were not listed on institutional forms. Submitting and defending expense claims added significantly to the already time-intensive work; I regularly gave up on accessing research funds for even basic expenses, instead paying out of pocket. This felt worthwhile and fair in the context of income disparity between me and many participants, even as it illustrated the extent to which academic funding structures are not designed for community research.

Then, there was the ongoing pressure to enumerate outputs through annual reports, tenure portfolios, etc., which prioritized particular products (publications and conferences), and did not offer space to describe or value care-centred research processes. There were less overt costs, too. For instance, focusing on accessible video creation instead of peer-reviewed publication could decrease my chances of being promoted or receiving future research grants. And, in a small department in a small Canadian university, I was navigating the bureaucratic dimensions of my research with no administrative support. In my research log in 2019, I wrote: “working against the grain, even when it is so care-filled, is exhausting.” I was sick with my fourth round of strep throat that year.

What I am describing is a paradox. In the university environment, caring so intensively for others was at odds with caring for myself, largely because the care that is central to my research was deemed an add-on to my job expectations (Bailey 2021). When I shared this reflection with my team, I realized they faced a similar paradox, too; RAs were intensively caretaking for participants while unable to properly care for themselves during or after workshops due to lack of adequate support, compensation, and job security. My team included many diverse bodyminds—introverted, neurodivergent, and chronically ill. Recovery time required after an intensive workshop was elusive and unpaid. Without structural change, my efforts to increase hours and pay rates were never adequate; to academic funding bodies, RA rest and recovery time is not a justifiable expense.

Before COVID-19, I often felt filled up—in a good way—by the reciprocal care of Aging Activisms, and my RAs echoed these sentiments. But the bureaucratic pieces were depleting, as was the assumption that community care and relationship-building are extraneous to metrics of productivity. These complexities and tensions exploded for me, as they did for many others, in COVID-19’s first wave.

3. Forced Stop

What are the temporalities that unfold beyond, away from, askance of productivity, capacity, self-sufficiency, independence, achievement?

(Kafer 2021, p. 420)

This story is about being propelled to crip time, accept loss, and care radically in a society desperate to maintain the capitalist status quo. While my experiences of the past few years have been exceptional in the context of my own life, I was certainly not the only one to suffer. Most were propelled to crip time with far less structural privilege and support; where I have had ongoing job, housing, and food security and a supportive partner and family, many lost access to their livelihoods, struggled for basic needs, and were far more isolated. Those already disabled faced ever-narrowing chances of survival (Barbarin 2021; Medak-Saltzman et al. 2022). In my case, experiences of trauma, illness, and disability burst the bubble of many comforts in my life, revealing the fragility and facade of institutional support; I was exposed to harsher tempos of loss, grief, and disability already commonplace to many; I experienced the disposability of care. My story is about these converging crises and what they revealed, from the context of my significant financial and societal privilege as a tenured academic. I will highlight both the crises and the privilege, illustrating the urgency to attend to the story’s unexceptionality, particularly for those of us aspiring toward reworlding from academic positions.

When COVID-19 hit our community in March 2020, I promptly cancelled all Aging Activisms events without knowing if/how Trent and the CRC would accommodate. In a global emergency, my primary concern was to protect the most vulnerable, many of whom were central to our research. The first wave and lockdown came very abruptly. By public health orders, universities were to stop all in-person teaching and research; students were asked to vacate residences; we scrambled to move our teaching online. Mostly, I stopped teaching and just met virtually with students, who were scared and isolated, exempting them from their final assignments. I also delivered food packages to ill students.

Working in this period was extremely disorienting. The forced research hiatus was not accompanied by any communication from the CRC, nor with any immediate reassurance from Trent that the academic clock would be paused. I was grateful for my secure income and my ability to stay home. Still, the necessity to stop, the uncertainty around institutional accommodation, the fear of contagion, and the inaccessibility of so many spaces were destabilizing experiences. This type of disorientation has long been part of regular life for many in the crip community. It resonated when Emily Krebs, like others, explained that COVID-19 was imposing aspects of crip time onto non-disabled bodyminds: “What many non-disabled people experienced as a ‘collective disorientation’ was, in many ways, a reorientation toward crip/sick ways of life” (Krebs 2022, p. 19). The immediate shift in tempo alongside the stark inequities of the pandemic threw into sharp relief the tensions between slow care and urgent liberation (Kim and Schalk 2021; Piepzna-Samarasinha 2018b).

Initially, I sought to keep as many of my RAs employed as possible and to offer support and care to the Aging Activisms community. In April and May, I had my team phone, email, and drop off essentials to the most vulnerable in our networks, justifying this pandemic care as research—that is, maintaining relationships we would come back to. My team created a virtual Aging Activisms space for sharing creative pursuits and student work while in isolation.5

As public health measures were extended, I further cancelled two immersive workshops for the late summer and fall. We explored, briefly, moving to a virtual format, but participants were focused on their basic physical and emotional needs and did not have the capacity for virtual gatherings or creative endeavours. At this point, most SSHRC grants were automatically extended, but my research office at Trent informed me that the CRC did not intend to extend or pause my grant in any way (I assumed this to be the case for all CRC grants). In this moment, I recognized how little some academic structures would accommodate the collective crip experience (Krebs 2022). It was unsafe, even illegal, for me to continue the research that I was funded to conduct, but my funder would not accommodate a pause in the work. This was a clear example of institutional inflexibility reinforcing productivist/abled temporalities.

Through that first pandemic spring, I leaned into radical slowness in a different part of my life—parenting—learning lessons about care and crip time that I would only come to recognize later. The abrupt cancellation of school, supports, and therapies, alongside expectations to pivot to online learning, was challenging for my children, who have learning, sensory-processing, and communication disabilities. I took on the role of teacher, counsellor, speech therapist, recreational coordinator, tech support, and parent. Even with the privilege of a partner to lean on, we could not keep up with all the responsibilities.

In mid-April, we decided to scale back—not just a slowdown, but a shift in expectations. We made schoolwork optional, offering instead rest time, creative projects, gardening, and being on the land. Although de-schooling required justification to the school and alternative activities, it significantly cut back the teacher and tech support roles. The turn toward meaningful care was healing for all of us. I was present, rested, and attentive, in ways I could not be while also working outside of the home. For my children, it was an unprecedented break from capitalist/ableist pressures to keep up and perform. Anxiety decreased, sleep improved; they were content and calm despite the global upheaval.

What I was learning in my previous research was reinforced at home. I understood anew how capitalist pressures are disabling; in letting go of those pressures, we no longer needed most of the therapies and supports we previously relied on. This shift depended on dedicated caregiver time, energy, and presence, none of which are typically valued or compensated in our society.

4. Care Time

We reassemble ourselves through the ordinary, everyday, and often painstaking work of looking after ourselves, looking after each other.

(Ahmed 2017, p. 240)

Radical care and uneven economies of care are not new to me, but during the pandemic, I lived them ever more acutely. In July 2020, both my parents experienced acute medical crises, the details of which are beyond the scope of this article. In one particularly traumatic instance, I received a call in the middle of the night that my mother had been rushed to hospital with heart failure and it was uncertain whether she would survive. COVID-19 protocols and best practices had prevented us from visiting her for months, and now we were not permitted at her bedside. It was a terrible moment of panic, grief, and helplessness. Miraculously, she pulled through, but she could no longer climb the stairs in her house, and there were several further 9-1-1 calls due to congestive heart failure.

We were experiencing the pandemic reality of crip time for elders with underlying conditions; precarious and vulnerable, their required care remained critically unsupported and inflexible (Tsai 2022). The lockdowns exacerbated ongoing challenges of care availability, access, and safety. Driving to Toronto to care for my parents multiple times per week (a minimum 3-hour return trip) jostled me abruptly out of my quiet child-filled routines. And I worried that my in-person care might put my parents at risk of COVID-19.

My parents and I decided to sell their house and find them an accessible, single-level residence close to us. The asset of a long-ago purchased house in an urban centre was another tremendous privilege that allowed my parents to relocate. The move was a mammoth undertaking amidst repeated hospitalizations. Formal supports were scarce; we organized close friends and family to provide access to medical care, house cleaning, and grocery delivery.

Danika Medak-Saltzman et al. (2022, p. 9) describe the compounding, though unexceptional, pressures of caregiving during the pandemic, and the ways in which academic institutions failed to adapt:

Colleges and universities [did not] adapt to the tremendous increase in labor for workers with caregiving responsibilities, who suddenly faced homeschooling and childcare, elder care or care for the disabled when their carefully crafted care networks broke apart as schools closed, living facilities for the elderly became particularly dangerous, and poorly paid in-home care workers now suddenly were both particularly vulnerable to infection and seen as a potential source of transmission.

I expected that my parents would gradually need more intensive, perhaps palliative, care. Being their primary caregiver would be challenging, but I believed it was the best option for their dignity and survival.

Though physical schools re-opened in September, we decided to homeschool in order to (more) safely “bubble” with my parents. This was not a decision made lightly; we knew there were social, emotional, academic, and therapeutic experiences we could not provide nor access from home. We hired some part-time childcare and tutoring support for my children to allow me to continue working without overburdening my partner. The media was reporting on the pandemic toll of caregiving, especially on working mothers. Medak-Saltzman et al. noted how academics acting as caregivers through this time risked impacting their capacities to keep up with the academic clock of tenure and promotion (Medak-Saltzman et al. 2022, p. 3).

My own fall teaching term was taught entirely online. Trent faculty were now expected to also find ways to continue research amidst public health restrictions. Colleagues were turning to writing and virtual presentations. I felt these productivity pressures. However, it did not make sense to start writing or presenting about the community-intensive research I was still so much in the middle of. Plus, I was exhausted.

Then, my mother fell in the night and broke her hip. For two months, in addition to teaching, supporting students, and homeschooling, I spent a minimum of eight hours per day physically caring for her as she convalesced at home. I learned a lot about crip time at my mother’s bedside. While days were repetitive and one blurred into the next, I was keenly aware of her care and survival as a tremendous collective effort. Life went something like this: I spent early mornings with my children, leaving them with a basic plan for their day. My partner did most of the daily household care: childcare, shopping, cooking, and laundry. Meanwhile, I tended to my mother’s basic needs: I helped with dressing, bathing, and moving; I made food, managed medical appointments, and assisted with physiotherapy. I taught my courses and attended departmental meetings from my parents’ home, sometimes from their bedside. In the evenings, my brother attended to my mother while I caught up on work emails, read books with my children, and made sure to get to bed early.

We lived in this care-time rhythm for six weeks without one single day off. I was deeply ensconced in what Sarah E. Stevens calls “care time” or the “liminal space between crip time and abled time” (Stevens 2018). It would have been impossible for me to run workshops in that time, even if we were not restricted by the pandemic. My paid work was pared down to absolute essentials. As Mei-Yu Tsai describes, “care work is slow work, and care time requires slow and consistent effort to resist ableist emphases on independence, productivity, efficiency, and speed” (2022 p. 12). I tried to accept my crip temporalities, but the institutional pressures weighed on me. I once again explored the possibility of a pause on my research funding, but the CRC was unreachable, and Trent’s research office was very sympathetic to my situation but had no way to assist. The irony of not being able to adapt the very position that awarded my care-centred, slow scholarship was ever-present:

5. Grief Time

To whose normal are we returning? Who is going back? And who will be left behind?

(Krebs 2022, p. 121)

The academic funding institution would not bend; there would be no accommodation for the crip time imposed on me and my research. I felt demoralized and depleted by what this would cost in terms of Aging Activisms; I was quite devastated at the continued devaluation of care.

On the advice of a dear friend, I sought counselling. Maybe I could figure out how to cope better, how to manage my time, how to fold myself back into productivity while caring full-time. But my counsellor said there was simply no magic way through the unmovable stresses I faced. Since abandoning my children or my parents at the height of a pandemic was not an option, I would have to take something else—i.e., work—off my plate to make space for caring for myself. “If you want everyone to survive this,” she said, “you have to put your own oxygen mask on first.”

I had trouble accepting this. I may have fully embraced the sentiment, but I did not believe I could add additional tasks of self-care to my already-packed days. Tasks such as exercise and rest would take time; they seemed impossible and tiring. In retrospect, I could have turned to more radical notions of interdependence and community care rather than turning the burden of self-care back on myself. But self-care did not (yet) feel necessary to my survival; I was coping. I was too tired to imagine how to take a break, so I just continued along.

Then, almost overnight, my mother started to walk again. Her pain subsided as her body healed. She still needed me, but not nearly as consistently or urgently. Suddenly, I felt I had copious amounts of time, which is interesting given that I was still teaching and homeschooling. I was coming to understand that crip temporalities operate in unpredictable ways. I did not collapse into a heap and rest, although I probably should have. Rather, a week opened for me in which I could think; I accelerated into a burst of worktime.

I quickly reached out to my former team, relieved and even excited to be in this rapid thinking/planning space. I have since come to understand this kind of energetic burst as another dimension of crip time, an unexpected acceleration (Kafer 2021). I felt excited to devise a new, community-informed plan for the final years of Aging Activisms. This was partly underpinned by those tentacles of productivity; I thought if I worked quickly enough, I could have a plan in place by March to align with my annual reporting requirements and funding cycles.

I spoke to my counsellor again, excited to tell her about the shift. Thoughtfully, she asked whether I might turn my momentary energy toward my own care, given my state and all who were depending on me. She also encouraged me to allow myself some space in the planning to grieve; to begin letting go of Aging Activisms as it was in the before-times. While I did not yet understand the scope of what she was suggesting, I did take her advice to shelve the planning temporarily and take a two-week winter break “off” to rest and reconnect with my partner and children. In retrospect, I have come to understand that both the burst to accelerated time and the deliberate pacing (with a self-imposed break) were elements of crip time, both complicated. Neither was imposed on me to the extent that the previous “care time” had been; yet both were, in part, responses to feeling pressure to produce amid ongoing constraints (resulting from pandemic-related restrictions and caregiving). The acceleration was driven by my genuine desire and excitement to imagine my research into a future on the one hand, and, on the other, by a looming pressure to comply with institutional reporting requirements. The decision to pause—to “rest” (or at least turn to more focused care for my children while navigating our first pandemic holiday season)—was similarly conflicted. This was, in part, me reclaiming crip time, resisting productivist work pressures, and recognizing my own and my family’s needs; it was also me pacing myself, knowing that I would need to come back from this “break” with even more energy and readiness to reinvent my research.

What happened next, however, was not rest or recovery. On the night of 25 December, the strictest lockdown thus far in Ontario was announced. That same night, my family faced another middle-of-the-night crisis: my partner’s father fell backward down the stairs, leading to a coma and, two weeks later, death. This would have been devastating in any context; during COVID-19, the tragedy was deepened by not being able to say goodbye or gather with family.

In our home, time swelled and stilled. Ellen Samuels’ statement, “crip time is grief time” resonates. Like for Samuels, time stopped; we were unprepared for “the way the days slowed and swelled unbearably” around death (Samuels 2017). My partner was spiralling through shock, anger, pain, and loss, all while tending to logistics. My care for him felt inadequate, so I focused on the children and cooking. We were all in a fog of shock and sadness.

Heading into the new year, we remained in an intensified lockdown. My partner would be away intermittently for months, closing his father’s apartment. The cumulative strains were now causing me insomnia, body aches, and anxiety. Reaching out again for some relief from my work responsibilities, my Department Chair generously went to the Dean on my behalf. It is worth noting the additional privilege I had here; my Chair and the Dean were both extremely supportive of me throughout this time. However, my Chair was told there was “no precedent” for paid caregiving support or to postpone my teaching to the spring term. With sympathy, my Dean offered two options: to apply for a reduction to part-time or to take full unpaid leave. As my family’s primary income-earner, neither seemed viable. I would push through.

I had just moved foggily into the winter teaching term when we were faced with yet another family medical emergency: my sister was admitted to hospital in Chicago. Like my mother, her congenital heart condition had intensified; she needed a heart transplant. I knew that few in this condition survive beyond months. I wanted desperately to visit her, but travel was not possible. As she worked through trauma, I spent many late nights supporting her remotely. Then, in February, by which time I understood she likely had only days to live, she received the transplant. In the lead up to the operation, I was fully on “grief time”; the days and nights went on forever and without break.

The time spent caring for my mother with her broken hip was repetitive but passed quickly. Now, I was mired in emotional paralysis. The compounding grief and anxiety at a time of so much isolation became debilitating and disabling. I was cycling through so many crip temporalities, all without the supports I needed to care for myself.

6. Broken Time

Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.

(Lorde [1988] 2017, p. 130)

The breakdown in my own mental and physical health was a rupture of sorts. My counsellor called it “clinical burnout brought on by compounding, exceptional stresses, resulting in cognitive impairment, insomnia, fatigue, emotional numbing, and body pain.” In practical terms, I could not focus on anything; I felt as if I was watching someone else through a movie camera. I was unable to keep track of my own schedule and regularly missed meetings. I could not make sense of my own teaching notes nor make it through the readings I had assigned my students. I was still feeling tension regarding Aging Activisms—I had no creative plan to offer on my annual report—but I stopped caring. I did not have the focus for any form of self-care; even trying to drink water felt like a challenge. By early March, I reached out to my doctor in desperation; I asked her to prescribe sleeping pills, which turned out to be of little use. My counsellor urged me to apply for medical leave.

My counsellor and department Chair graciously took me through the initial application process for the maximum of 6 months paid sick/stress leave provided for in my collective agreement. My Dean fully supported this and offered additional accommodations (support with marking) to help tide me over until the leave would begin. With this, the CRC was required to pause my grant for six months. However, my research was already one year behind; even with support from my research office (and the advocacy of the VP of Research at my university), the CRC refused any further extension. Meanwhile, the internalized pressures of productivity and student care continued. How could I hand over a course I barely had a grip on? What about my students set to defend dissertations? My research team? As Samuels explains, neoliberalism demands we navigate inaccessible bureaucratic steps before we might be afforded time for recovery; I would have to “work hard to earn the time to be sick” (Samuels 2017). This was “broken time.” While I had collapsed, I still had to rally any remaining productivity to achieve medical leave.

I moved toward further crip temporalities and self-care. I needed to do less and be responsible for less. The ableist assumption embedded in my leave was that “reduced capacities are one-time temporary conditions” (Medak-Saltzman et al. 2022, p. 6), and that I would return “back to normal.” While six months is more paid leave than most are entitled to, it is nonetheless a rigid deadline for recovery; it did not hold enough space for the brokenness I was experiencing, the compounding illness I was about to experience, or the ongoing pandemic disruptions. As Samuels writes:

[Crip time] requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don’t want to, even when we want to keep going, to move ahead. It insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us while also pushing it beyond its limits. Crip time means listening to the broken languages of our bodies, translating them, honoring their words. (Samuels 2017)

I was about to learn this even more deeply.

7. Cancer Time

Survival can thus be what we do for others, with others. We need each other to survive; we need to be a part of each other’s survival.

(Ahmed 2017, p. 235)

In March 2021, a mammogram as part of a high-risk screening revealed a small abnormality—in the month that followed, I learned I had breast cancer. Many have written powerfully about their journeys with breast cancer (Lorde 1980; Lin 2016). While I will not go into depth here, I do want to highlight how the stress of the cancer diagnosis, compounded by the pandemic, exacerbated my burnout. The cancer added significantly to my recovery time, but it also went essentially unnoticed by the institutions at play in my work life. In other words, the arbitrary six months allotted for my full and complete recovery from my existing clinical burnout remained static. This offered another clear insight into structural inflexibility and the need for systemic transformation. I also started to understand in a more embodied way that crip time entails multiple, unpredictable temporalities, and that surviving these temporalities within capitalist systems depends on care as a reciprocal practice.

The experience of cancer is not only physical; it is also the worry, fear, and worst-case-scenarios, and the work of protecting those around you (i.e., my children). The cancer jogged me out of my numbness; I cried a lot at night when everyone else was sleeping. The most stressful part was the waiting. Time suddenly went very slowly again. It was nine very long weeks from my first abnormal mammogram to the pathology report; thankfully, the cancer was caught early and had not spread. These two months were spent anxiously as I scheduled, re-scheduled, modified, and attended various procedures, tests, surgeries, pandemic-related delays, and consultations. In the limited options of pandemic healthcare, I underwent an outpatient double mastectomy with sparse aftercare, and waited three more weeks for a pathology report.

As Kafer (2021) writes, the slowness and endless waiting of crip time can be punishing, unrelenting. In the isolation of a third wave of lockdowns, a few close friends held me virtually through the waiting, reminding me that I needed community. In the week or so before surgery, I gathered the courage to send a group email to select friends and colleagues. It felt odd to reach out with this narrative of personal trauma, but I was immediately showered with gifts of community care. The afternoon before my surgery, three friends showed up on my street, despite the stay-at-home orders. They brought drums, a hand-made basket full of medicines from the land, and their children. They drummed and sang songs of strength as I sat on my front step crying. My children held me, and then ran around with the other children, a rare opportunity in lockdown. I felt vulnerable yet also strengthened enough to reach out even more. One friend, Ziysah in fact, told me that my reaching out provided them with the opportunity to care; it was reciprocal. This realization of our interdependence was another turning point for me.

The physical toll of the cancer was significant. The weeks following my surgery were painful and incapacitating as I had tubes draining from my chest. It took months of hard work to (mostly) regain the strength and mobility of my upper body. I was told I made an excellent recovery, though I continue to have a limited range of motion and pain in one shoulder. During my initial recovery, my family and community showered me with every kind of care. And—uncharacteristically—I accepted it. Porch visits, home-made meals, chocolate, books, and gifts for the children. My partner’s mother and Melissa provided childcare while I rested in a way that I had not previously nor have since. It took this extreme scenario for me to finally prioritize self-care. I was able to do so because of the care from our community and the institutional support of paid leave.

Healing, like crip time, is never linear. As I came out of recovery that summer with four months left of leave, my body was still straining and my mind remained foggy. Wearily, I continued the work of self and family care, while many community supports faded.

I contacted my family doctor mid-summer. When was I going to feel better? She noticed then that, in the COVID-19 chaos, I never had routine pre-surgical bloodwork to check for underlying conditions; I also had not had post-operative care, nor been informed that there was significant blood loss in my surgery, making me prone to anemia. Bloodwork revealed very low iron levels and I was prescribed iron supplements. But the fatigue continued. Was it lingering burnout, iron deficiency, or something else?

The next medical surprise was another cancer scare as an “irregular mass” was found in a pelvic scan. With six weeks left of paid leave, I was thrown deeper into that elongated experience of cancer time. There was more waiting and out-of-town testing. Fortunately, the mass was benign, but other, non-life-threatening issues were detected that were likely compounding my fatigue. Suffice it to say, these last months of my leave were not restful.

I turned to the possibility of long-term disability via my health benefits. There were many barriers: the system was based on the idea of a worsening condition, but I had a new condition; it required a medical professional to have approved my first leave, and my counsellor did not qualify; the six-month maximum applied regardless of any new condition. My colleagues advised that I would likely be declined; one called it “denial by design.” Apparently, it was just bad luck that the cancer did not wait 18 months to appear, when I would have been afforded more time for recovery.

In these moments, I experienced the drag of crip time. Like Samuels:

I moved backward instead of forward; not into a state of health, but further into the world of disability, a world I was increasingly coming to understand as my own. I moved from being someone who kept getting sick to someone who was sick all the time, whose inner clock was attuned to my own physical state rather than the external routines of a society ordered around bodies that were not like mine (Samuels 2017).

Mired in fatigue, I did not have the emotional wherewithal for bureaucracy. It felt easier to return to work than to wade through institutional barriers.

8. Gentle Methodologies

The times are urgent, so let us slow down.

(Akomolafe 2020, p. 49)

Despite everything, I felt a bit hopeful about returning to work in fall of 2021, at least pandemic-wise. Vaccine uptake was high in my community, and they were about to begin rolling out vaccines for children. It was still “Delta times.” There was hope that vaccines would curb transmission; mask mandates and limitations on indoor gatherings remained. Our children went back to school after being home for a year and a half. As a family with vulnerable members, we were especially cautious, even as we welcomed the opportunity to be somewhat less isolated.

As I returned to work in November, my primary task was to get Aging Activisms running again. I knew I was not well enough to start organizing workshops and caring for others, nor was it safe or legal to gather in the ways we had been used to. The wisdom I gained over the previous year led me to look more seriously at the internalized pressures of academia/capitalism. What might crip time mean for me now and what might it do for my return, my research? I knew the underpinning capitalist ableism I was up against (Krebs 2022). But what to do? Leaning into my privilege as a tenured professor, I knew I did not need to be productive by someone else’s definition or metric, or at least that the stakes were not dire. But, in the productivity-obsessed culture of academia, I also felt lost and anxious.

A feminist academic writing coach with a deep understanding of academic structures and remarkable criticality in her approach to work asked me: “What is the worst that could happen if you do nothing more with the CRC grant, but let it run out with the research not completed?” I considered this carefully. I did not like the idea, on principle. But the only tangible repercussions I could identify were financial: impacts on my future promotion to full professor and a decreased likelihood of success in future funding competitions. Although these scenarios were significant losses, they gave me huge assurance. I did not need a promotion, raise, or more research funding. What I needed was continued healing. I wanted to be able to complete the work I had proposed years ago, but the proposal had come from a different time and a different bodymind. I had to release the shame of letting this research go in order to ensure the wellbeing (and maybe survival) of myself, my family, and my team.

It was a reckoning to realize that Aging Activisms’ commitment to radical care rather than community care would have to start with honouring my own crip temporalities and disabled bodymind. I needed to approach the question of ‘what next?’ with genuine curiosity, not panic or pressure to produce a new plan. What could we do, gently, with the remaining time and funding left on my grant, in the pandemic context? There would be losses, but maybe also unexpected possibilities.

In my first term back at work, my departmental colleagues asked almost no service of me, and my Chair (with the support of my Dean) managed to shield me from teaching for that full academic year, on the basis that I needed to get Aging Activisms re-started. They were caring for me so I could care for myself.

I stepped slowly back into the work. I hosted a campfire on campus, inviting former research team members to visit and re-connect. I walked with grad students, exchanging ideas. From my bed, I watched some of our earlier media capsules, and called some participants to ask how they were doing. I started an email conversation with my research team—Ziysah, Melissa, and dear friend and colleague Jenn Cole—about “gentle methodologies.” We came up with ideas such as river walks and campfire conversations as research methods. We discussed what we obtain—what care is turned back onto us as researchers—in our research relationships, and how we might further honour this interdependence and reciprocity in/as intrinsic to our collective reworlding practices. Ziysah raised the joy they derived from visiting with a participant at her home, a remarkable woman of then 99 years old, to allow her to accessibly sign a consent form. On this visit, they took the time to fix a vacuum and have tea—such activities were not unusual in our research encounters. They reflected that, even if they had not billed out these hours (which they did, upon our mutual agreement), this visit would have been deeply nurturing and worthwhile for them both. How often do we have opportunities to visit with likeminded folks six decades older/younger than ourselves? This was such an important reminder; clearly, I could not have expressed this within institutional reporting requirements or on a CV, but the mismatch between these structures and the essence of the work did not diminish such moments of mutual care.

I leaned on the team to help me think through the question I was pondering: what do radical care and crip time mean for Aging Activisms? I was reminded that Aging Activisms had long been grappling with these very questions. RAs asked how we might, even amidst institutionalized capitalism, practice decolonial, crip, caring futures in real time, in practical, grounded ways; make the lines of care and sharing within the work more reciprocal in all directions; and maybe even push the university to count things such as healing, sharing, recovering, growing, and grieving in their metrics of productivity. Their questions helped seed this article.

We began to plan in a non-labour-intensive way, with minimal energy required from me, and the bulk of the organizing taken on by my RAs. We planned a series of “mini-workshops” for early winter: campfire conversations and virtual “crafternoons.” In these “easeful” gatherings, as Ziysah called them, we would revisit our questions from our final workshop in 2019: How do we imagine livable/just futures in this community? We would also ask if and how thinking about futures had changed over the pandemic, and consider what, in COVID-times, gentle, care-oriented research might involve. I felt lifted to be returning to this work in a more relaxed way.

9. Creative Time

Radical care can present an otherwise.

(Hobart and Kneese 2020, p. 13)

Omicron arrived just over a month after my return to work, evading vaccines and shattering hopes. By mid-December, we were heading into renewed lockdowns. Another holiday season in isolation. The one-year anniversary of my father-in-law’s tragic death. I was not the only one struggling; the anti-lockdown occupations that followed in Canada (and elsewhere) were evidence of widespread unhinging. While I appreciated that public health leaders and politicians were continuing to take measures to protect the most vulnerable, looping back into imposed hiatus just as I was finding my way to a gentle return came as a blow. I crashed: intensified fatigue, insomnia, body pain. It reminded me again that crip time—whether a result of bodily healing or collective disorientation—is never linear or predictable (Kafer 2021).

Schools did not re-open for several weeks after winter break. We were privileged to be able to keep our children home until we could all be fully vaccinated and boosted, and we were acutely aware that other families did not have such options. As the spring approached, I felt helpless that provincial policies were set to abandon the most vulnerable. This round of homeschooling was also exponentially more difficult. Where the first stint at home was a much-needed break for my children, this time, it was a palpable loss of community. We leaned on friends who had made the same choice.

At work, our plans for fireside workshops were shelved. We paused and entered another cycle of slow, grief-filled time, yearning for connection but afraid to gather. I was not well enough to dig into scholarly activities such as reading or writing at that point, but something low-pressure and creative might help me stay connected. On a whim, I registered for an eight-week online digital storytelling course to learn a technique and methodology that had long intrigued me.6 Making space for my own creative practice was an unexpected bit of self-care, and I recognized the privilege of having a family and job that supported this practice.

Each student was required to make a film. I decided to turn the question of how we imagine futures in these times back on myself, as a kind of reflexive practice. In one rapid burst of energy, I answered my research question in the form of a letter to my younger child about her climate grief. Less explicitly, I was also writing a letter to Aging Activisms and to Michi Saagiig land and territory, sharing what I was learning in our work together. With the help of photos stored on my phone, this letter became a 5-minute digital story, called Dream Beautiful Futures.7 The story moves from the helplessness of the apocalypse toward the possibility of alternative world-making through daily acts of connecting, caring, and creating. The piece felt vulnerable; I started by sharing it with a few people close to me, who received it with love. Jenn even said she received it as “heart-medicine.” In the writing exercises and creation process involved in that course, I realized anew that the work of making liveable futures is deeply connected to the work of caregiving and intergenerational continuance. All the caring for myself and my loved ones was radical reworlding (Hobart and Kneese 2020; Tsai 2022).

In the spirit of the unpredictability and never-finishing nature of crip time, I will end the story here, with the completion of the only thing I have “produced” in this pandemic (other than this article!). This creative practice pulled me back to the broader project of Aging Activisms: to actively imagine crip, decolonial, just, liveable futures; to enact collective survival; and to make these futures in the present through creative, care-filled, loving practices.

If I had more space (both within the word limits of this publication and within my own capacity), I would continue the story with how I bumbled along through the term; eventually held two virtual gatherings with Aging Activisms participants, which included screening my digital story; and continued to creatively, if not unproblematically, navigate care, chronic symptoms, and work expectations. I would write, too, about the ironies of trying to write this article along the multiple temporalities of crip time. I would send a shout-out to the editors of this Special Issue for their flexibility, enabling my process in the time it took, and caring for me along the way. I would tell you that I am at a critical juncture: with no more leave available to me and one year of CRC funding left, I have yet to substantively resume my research. I miss Aging Activisms, my community, and the creative intellectual work, but my bodymind continues to struggle. I want to resume research in even more caring ways. I want to de-program from the looming sense of “time running out.” I know that neither the world nor my work nor my bodymind can go back. I am working to accept and imagine otherwise. As I write this article, I am coming to understand a radically different world.

10. Crip Time, Radical Care, and Beautiful Futures: Conclusions

We will leave no one behind as we roll, limp, stim, sign and create the decolonial living future. […] I am dreaming like my life depends on it. Because it does. And so does yours.

(Piepzna-Samarasinha 2018b)

To conclude, I return to the questions I set out in the introduction and suggest what my narrative might contribute to ongoing scholarship. What does it mean to meaningfully crip time and centre care in artful research in these tumultuous times? What might a commitment to crip time based on radical care do for me, for Aging Activisms, and for others aspiring to reworlding research?

Like Kafer (2021), I have learned that slowing down is, at times, necessary, revolutionary, ethical, and care-filled. But I have also learned that a political and ethical commitment to slow scholarship does not always or necessarily equate with crip time. I learned this the hard way, through my own changing bodymind in a rapidly shifting global emergency. The slow scholarship at the core of Aging Activisms originally allowed my research team to care for community members. Incredible activists, artists, and organizers, many of whom are marginalized within society, felt validated and held in ways they rarely experienced within the academy; researchers, too, were nurtured by the care shown to them by participants. The relationships that formed still reverberate in beautiful ways through the community and the reciprocity of care in this research holds intrinsic value. Still, there were significant institutional hurdles involved; slowing down to centre community care often meant more work and less care for me and my team. A commitment to crip research, to resisting timelines based on pressures for productivity and efficiency, requires more than community care; if structural issues remain intact, it can only mean greater strain on researchers (Bailey 2021).

The pandemic experience, for me and many others, was deeply disorienting, out of our control, and exposing of capitalist–colonial fissures everywhere in society, including in academia (Krebs 2022). Crip time is not the same as political–ethical imperatives to slow down, care, and resist ableism, though these are important anti-oppressive commitments. I came to this revelation not by choice, but by having crip time imposed on me. The hiatus in my work, which began in the first wave of the pandemic and, in many ways, continues, was imposed, much as changes in temporality and possibility were experienced widely, and wildly unevenly, around the world (Barbarin 2021).

I have come to appreciate in new and ever-evolving ways how crip time always entails multiple temporalities and trajectories, always imposed (and sometimes reclaimed) differently upon (or by) different people. The story I tell is full of shifting tempos, from the slow, elongated temporalities of cancer time to the drawn-out, swollen periods of grief. They include the moments of full hiatus when it was safer not to gather and when my bodymind felt too broken to push through (Samuels 2017). Sometimes, this was care time, all-encompassing and repetitive (Tsai 2022); sometimes, it was accelerated bursts of energy and work time (Kafer 2021). Our ethical–political commitment must be to resist ableism by honouring and valuing all versions of crip time, by supporting our own and others’ multiple and ever-changing circumstances, bodyminds, and care needs.

My story illustrates the ways institutions, including academic institutions, are inflexible and pose barriers to care-centred practices. Even when the individuals involved are generous and supportive, the setup of the institution denies the possibility of care in structural ways. From the “denial by design” of medical leave that could not be extended even for a breast cancer diagnosis, to the research grant that cannot be paused, even when the proposed work becomes unsafe and illegal, there is a disjuncture between crip realities and institutional pressures for “productivity at all costs” (Cepeda 2021).

My immediate family survived against this cracked backdrop, through continuous, interconnected, active care, and thanks to immense systemic privilege.8 Upon reflection, this radical care that sustained me and my family may also be the stuff of reworlding. Cripping time in a capitalist–colonial world means understanding, reclaiming, and practicing radical care as part of our work of always actively imagining and making the futures we are striving for. Many, such as Leah Lakshmi Piepzna-Samarasinha (Piepzna-Samarasinha 2022) and Hi‘ilei Julia Kawehipuaakahaopulani Hobart and Tamara Kneese (Hobart and Kneese 2020), have offered brilliant visions around care and survival, and even around the liberatory potential of radical care. But what I had not connected before my pandemic experience, or at least not in an embodied way, was how radical care is both necessary to survival and the key to how we might make the next world, the one I want to be part of.

I am learning (like Kim and Schalk 2021; Piepzna-Samarasinha 2018a) to lean into interdependence, to value the work of caregiving in the time it takes, and (like Cepeda (2021) and Krebs (2022)) that part of my own self-care is refusing the internalized pressures of capitalism and the tentacles of the “return to.” This refusal is not without costs and it is not about my own individual resilience; refusal, and even loss, can be generative too, opening new possibilities, new collective possibilities outside of ongoing oppressions. Grieving the loss of what Aging Activisms once was opened a space for me to turn inward in creative practice. This emergent, unplanned detour led to a small offering of heart-medicine and future-making for my family, my research community, and myself.

In my experience of the pandemic, crip time imposed different temporalities, realities, and trajectories, even while strengthening colonial, capitalist, ableist systems. But crip time also pushes us to reclaim radical care. This hard work is imbued with the generativity of our refusals, our grief, our creativity, our imaginations, and the wisdom we are gaining. This radical care is a reworlding practice; it orients us to the future, propelling us to imagine and make beautiful worlds.

In closing, a final thought about the beauty and urgency of slowness. My commitment to slower ways never came from thinking that the work I do is leisurely or untimely. My work is about intergenerational continuance at a time of growing inequalities, violence, and ecological collapse; it is anything but leisurely or low-priority. There is a “complexity of claiming time for ourselves to slow down, to take care, while also understanding the real urgency of our contemporary moment” (Kim and Schalk 2021, p. 327). In times of desperation and doom, Aging Activisms has been dreaming otherworlds and shifting cultural imaginaries (Chazan and Whetung 2022). Research for the next world must find other ways beyond fast-paced, high-production extraction. As Bayo Akomolafe offers, “times are urgent, so let us slow down” (Akomolafe 2020, p. 49). But I understand now that slowing down, on its own, is not enough; we must also shift to radical self- and community care. In our care-filled, artful practices, we slowly make our next world.