Toward Access Justice in the Academy: Centring Episodic Disability to Revision Research Methodologies

Abstract

This article explores questions of disability access justice within the academy through the lens of an online digital/multimedia storytelling (DS) research workshop conducted during the COVID-19 pandemic. Our investigation uncovers how the shift from in-person to online DS methodologies created newfound opportunities for participation, particularly for individuals with episodic disabilities (EDs). Through an analysis of three co-author participants’ multimedia/digital stories and their reflective insights, we investigate the interplay between research methodologies and the broader context of disability access within the academy. Participants’ stories of inventive adaptations unfold against a backdrop of experiences in traditional academic settings that privilege normative ways of working and seldom accommodate diverse rhythms and access needs, including of students, faculty and staff. In light of these narratives, we advocate for an ongoing commitment to access-centered practices in research and work beyond crisis situations. The article concludes that academic research enterprises can accommodate a wider spectrum of participants—particularly those with episodic disabilities—and enhance research outcomes by recognizing and anticipating diverse bodyminds within the design of research methodologies and techniques.

Introduction

The stories presented in our paper can be viewed online. ¹

When I moved to Oakland in 2007, I started writing from bed. I wrote in old sleep pants, lying on a heating pad, during the hours I spent in my big sick-and-disabled femme of color bed cave. I wasn’t alone in this. I did so alongside many other sick and disabled writers making culture. Writing from bed is a time-honored disabled way of being an activist and cultural worker. It’s one the mainstream doesn’t often acknowledge but whose lineage stretches from Frida Kahlo painting in bed to Grace Lee Boggs writing in her wheelchair at age ninety-eight (Piepzna-Samarasinha, 2018, p. 15).

In her book Care Work: Dreaming Disability Justice (2018), Leah Lakshmi Piepzna-Samarasinha describes how activists, thinkers, and culture makers in the disability justice movement, which centres intersectionality, anti-capitalism, collectivity, and interdependence, have always embraced working in ways that honour bodymind difference. She identifies one practice that we, the co-authors of this article, discovered many of us also embrace as an access practice as we began to write this piece together—that “time-honored disabled way” of creating and participating in disability culture by writing from our beds. We are six disabled academics living and working on the northern part of Turtle Island (North America), in Ontario and Manitoba, Canada. Some of us are securely employed within the academy, while most of us are in precarious positions. We all live with bodymind differences including episodic disabilities which, as we will discuss, can result in a fluctuating capacity to work.

Most traditionally structured workplaces across Turtle Island do not welcome work patterns like the ones that Piepzna-Samarasinha describes. For instance, disabled workers have long reported how the post-secondary sector marginalizes non-normativity by leaving little space to meet the ever-intensifying productivity demands of academia (Brown & Leigh, 2018). This is especially true for those of us whose embodied experiences of disability do not fit a neoliberal or normative rhythm. Despite this, disabled academic workers persist, seeking and finding ways to survive, push back against intensifying neoliberal demands, and pry open room for access.

As disabled academics, we have observed how our sector’s inaccessibility extends to research methodologies, which frequently fail to include non-normative experience. The research enterprise upholds ableism where its recruitment efforts, data collection and creation methods, and findings presume most people encounter the world in physically, mentally, cognitively, and/or neurologically similar ways—or fit a mythical “species-typical” standard (Rice et al., 2021). Indeed, academic ableism (Dolmage, 2017) remains in place in all contemporary research praxis that neglects to translate research tools and findings into accessible formats and clear language, and where essential elements of the research process (from ethics review to interpretation) do not consider difference and access at every step. Undeniably, the widespread embrace of normative research methods and infrastructures means that disabled people must navigate multiple barriers to access research as both researchers and participants. Further, established practices buttress an ableist knowledge-making system that continues to distort research agendas, processes, and outcomes at least since the scientific embrace of eugenics over the last century (Aidley & Fearon, 2021).

With the onset of the COVID-19 emergency, those of us working in the post-secondary sphere suddenly had to question long-established research and teaching practices and find safe pathways for the continuance of our work. Emergency responses that required many of us to stay home turned “pivot” into the buzzword of the early pandemic (McGinn, 2021) as we worked out how to move our collective social life into the digital realm. Many disability studies scholars and activists initially felt hopeful as we collectively celebrated how the new pathways and practices being opened also expanded access possibilities for bodymind difference. Suddenly, the ingenuity, grit, and brilliance of disability communities became perceptible as news sources began to publish stories on the access practices that our communities have long relied on to exercise our political will and contribute to public life (Chandler et al., 2024; Rice, Jones & Mündel, 2022; Rice, Jones, Mündel, Douglas, et al., 2022).

The unprecedented shift to remote participation in work, culture, and social life had a particularly strong impact on people with episodic disabilities (EDs)—those living with physical, mental, and/or neurological conditions characterized by unpredictability and variability in timing, intensity, and duration of impairment. In Canada, governmental and non-governmental policy actors use the term ED to address employment access barriers confronted by those living with fluctuating conditions such as Crohn’s disease, anxiety, epilepsy, etc., and, more recently, long COVID; people with these embodied/enminded differences often require flexibility in the scheduling and location of work, including the option to work from home (Duval et al., 2020; Rice, Harrison, et al., 2023; Vick, 2014). Prior to the pandemic, employers across many sectors claimed that the flexible arrangements required by workers with EDs were impractical—or even impossible—to implement (Hickox & Liao, 2020; Schur et al., 2020). As previous research has shown (e.g. Durant & Kortes-Miller, 2023; McLean & Maalsen, 2020; Rice, Harrison, et al., 2023) these restrictions were also at play in the conduct of social research, especially amongst those using qualitative approaches with their embrace of face-to-face methods, necessitating significant shifts to research practices as the pandemic has unfolded.

The Re•Vision Centre for Art and Social Justice, an arts methodology research hub at the University of Guelph (Ontario), investigates the power of art to shift representational fields and advance inclusion, equity, and justice across sectors, including education. Prior to the pandemic, Re•Vision ran digital storytelling (DS) workshops in community settings with researchers (and sometimes participants) traveling regionally, nationally, and internationally to co-create art and story with marginalized groups on a diversity of activist research projects (Rice & Mündel, 2018, 2019). For example, From Invisibility to Inclusion (i2i), the research project on which we collectively work, seeks to advance socio-economic opportunities for people with EDs; and one element of our research design has entailed running DS workshops targeting different groups of people with EDs. This included three workshop series, one for people with EDs and allies working in areas relevant to ED (e.g. law, social policy, human resources, equity, diversity and inclusion consulting); a second for people receiving public income support in Ontario; and a third examining ED experiences within post-secondary education. We chose DS because it invites people to centre their first-person experiences in short videos using audio recordings, video, image, artwork, soundscapes and more. DS workshops bring diversely situated people together, creating opportunities to foster community and accountability in the creation of thick stories (Davey & Benjaminsen, 2021) of EDs and livelihoods, stories that unveil the challenges of sustaining a work life in the face of ever-increasing productivity demands; and stories that speak back to the ways that policy regimes constrain and foreclose possibilities for episodically disabled people to secure a living income.

When authorities instituted emergency measures to limit COVID’s spread across Canada in Spring 2020, we put our research on pause, realizing that we needed to collectively reimagine how we could work safely and affirmatively together. In this article, we describe the processes and impacts of adapting our in-person DS methodology to conduct our i2i workshop series with post-secondary worker participants—the first ever Re•Vision DS workshop to take place entirely online (Rice, Jones, Mündel, Douglas, et al., 2022). While pandemic emergency responses provided the initial impetus for this shift, we soon realized that the experience had important implications for building accessible research infrastructures and cultures (La Rose et al., 2022; Rice, Jones & Mündel, 2022), and advancing access within post-secondary institutions more broadly.

To delve into the affects and effects of these methodological shifts, we draw from three multimedia/digital stories made in the i2i online workshop, each accompanied by a reflection from its creator. We bring the stories and reflections into conversation with critical theories in disability studies related to the temporal and spatial aspects of access. These include “crip time” (Kafer, 2013), an experience of time inflected by disability; “micro-activist affordances of disability” (Dokumaci, 2013), whereby disabled people use embodied knowledge to create access through improvisation; and a “kaleidoscopic perspective” (Medina, 2013), which advocates for an expanding awareness of oppression. Taken together, these concepts reveal how incorporating critical access into research processes enriches outputs by creating a crip timespace for disability and difference (Samuels, 2017). By exploring the temporal and spatial dimensions of access relative to qualitative story-based research design, we reveal how centring embodied, enminded, and emplaced accounts of difference challenges neoliberal pressures in the academy by generating timespaces capable of registering and responding to the needs, interests, and desires of a wider range of participants and researchers, in this case, people with EDs.

Access in Post-Secondary Institutions

Across socially progressive systems throughout western democracies, such as the higher education and arts and culture sectors, the uptake of access practices has gained traction as institutions increasingly institute checklist approaches (Collins et al., 2022) in response to industry guidelines and legislative requirements. For example, in Ontario, where the Re•Vision Centre and the i2i project are located, the Access for Ontarians with Disabilities Act sets out specific standards for the accessibility of built environments, information and communications, and so forth. In addition, the Ontario Human Rights Code prohibits discrimination against disabled people, including in employment and education, meaning that post-secondary institutions must comply with these laws. The ongoing marginalization of disabled people as students and workers within Ontario colleges and universities (Ontario Human Rights Commission, 2018), and in other provincial sectors with similar access laws (Morrison, 2019), demonstrates how a solely compliance-driven approach to access fails to address the “real” (i.e. felt, embodied, lived) and materially produced (through the misfitting of bodies with built and social environments) access needs and desires of diversely-situated disabled people.

As Aimée Morrison (2019) notes, universities typically approach disability access through the lens of accommodation, framing disability as a deficit to be mitigated (or erased) through limited adjustments for workers (academics, staff) and students deemed “eligible.” To access accommodations, HR systems subject disabled faculty, staff, and students to bureaucratized and medicalized processes designed to demarcate the line between disability and ability. Margaret Price’s (2021) research on the “accommodations loop” that occurs in the meeting of non-normative bodies with academic HR management systems reveals the arduousness and ineffectiveness of processes that orient to surveillance instead of support: unsurprisingly, the former most often ends with the disabled person exiting the system. Such a narrow, controlling or regulating response to difference overlooks the potential for transformative change that comes from centring access justice (Rice, Harrison, et al., 2023), which orients not to mitigating what certain individuals are perceived to lack (e.g., evaluating whether an employee needs a screen reader), and instead to creating environments that prioritize access (e.g. giving workers access to accessible technology, breaks, the capacity to work from home where feasible, etc.), and drawing greater attention to what difference brings to the academic community and the larger world.

Access in Academic Research

In keeping with its inaccessibility to disabled workers and students, the academy also deprioritizes access in scientific and social scientific research, resulting in the absence of disabled people’s perspectives (Aidley & Fearon, 2021). When researchers do take access into account, they tend to follow institutional norms in adopting a checklist approach: e.g., Rainey (2015) notes that researchers planning in-person research activities may account for a space’s wheelchair accessibility, but may neglect to address environmental, sensory, and temporal access requirements (e.g. the presence of scented products, issues with lighting or noise, the pacing of activities and breaks) (pp. 105–106). While checklists play a critical role in advancing disabled people’s participation in research, we argue that the standardization of access will inevitably fail to address people’s diverse access requirements. If we understand difference in the affirmative as basic to life and as always emerging, then we recognize that difference “cannot be fully anticipated, planned for, known or mastered” (Rice et al., 2015, p. 523) and therefore what constitutes access justice in any particular context is always an open question.

As Hamraie (2017) points out, while in the 1990s disabled activist designers innovated the concepts of “universal design” and “design for everyone” to push for laws mandating accessible infrastructures in the USA, these radical approaches quickly became imbricated with discourses of normalization and productivity that privileged access interventions benefiting the majority (e.g., popularizing large bathrooms and curb cuts because they help caregivers as well as people using mobility devices), while access features serving only non-normative people had much more limited uptake (e.g., offering American Sign Language interpretation to allow Deaf people to participate in events). Hamraie notes that because critical access recognizes access as political, access interventions must account for the complex interactions between disability and other dimensions of social location—including “size, race, economics, gender, and age oppression” (2018a, p. 85). In contrast to standardizing universalist approaches that deprioritize access for disabled minorities, critical access approaches reveal that disabled people’s desires for access may better capture and account for the diversity and specificity of access requirements (Ellcessor, 2022; Rice, Chandler, et al., 2023), including within research settings. As articulated by Hamraie, critical access emerges through an “interpretive relation between bodies,” rather than through a comparative one that upholds a normative standard that devalues bodies coded-as-different. In this way, critical access disrupts the positioning of non-normativity as deficit and challenges design to move beyond predetermined solutions (2018b, p. 456).

Access in Multimedia Storytelling Methodologies

Re•Vision prioritizes intersectional and disability-inclusive research methodologies and spaces (Rice & Mündel, 2019), ensuring that diversely situated disabled people have equitable opportunities to engage in knowledge generation and artistic practice. Our participatory ethos draws inspiration from the methodological innovations developed by StoryCenter Berkeley in the 1990s, and from much longer lineages of social justice thinkers, artists, and activists who have mobilized art and story to open pathways for social transformation (Rice & Mündel, 2018). Unlike extractive forms of DS that disconnect creators’ narratives from their socio-political framings to dissect them into decontextualized data points, Re•Vision’s radical participatory approach prioritizes the voices and agency of creators throughout the making process. Embracing social constructionist, decolonial, intersectional and post humanist perspectives, our research methodology moves beyond a post-positivist framework, recognizing subjectivity and multiplicity in experiences among differently affected people, and enabling their stories to serve as transformative vehicles for knowledge generation and just social change. Re•Vision DS workshops also offer an example of how a flexible arts-based research praxis can commit to the processual redesign of research infrastructures, processes, and outputs to maximize access and justice for those whose experiences and perspectives we centre.

As part of every design process, we engage facilitators, artistic supports, and participant storymakers from focus communities to create inclusive spaces and ensure that community members drive the research process and outputs. For i2i, as in our other projects, we utilized a recruitment matrix (Collins et al., 2023) to maximize the inclusion of different experiences and positionalities across disability, race, class, gender, geography, and for this project, employment characteristics. For the i2i workshop, the participants, facilitators, and artists all shared the experience of working in an academic environment while living with an ED. Difference-driven workshop design, we have found, facilitates community-building within the research apparatus itself while prioritizing perspectives marginalized within knowledge generation. This opens space for the emergence of transformative narratives, from individual digital stories to collective conversations, each challenging entrenched barriers in academic work and research.

Relationships are central to access in the Re•Vision multimedia/DS methodology. Participants, facilitators, and artists co-create narratives that disrupt and remake normative spaces, empower subordinated perspectives therein and challenge conventional knowledge generation praxis. Storymakers freely create their preferred stories, exercising agency over content and form. Facilitators build opportunities for collaboration in story design, such as through group writing exercises and story circles. For these exercises, facilitators invite storymakers to document their story ideas, including considerations of imagery, sounds, and words. Storymakers can choose whether or not to share their ideas with others, and whether to receive conceptual, writing, and technical support. This process grants storymakers maximal control over self-disclosure. Prioritizing creator agency within a social justice-oriented workshop fosters mutual autonomy, expressivity and accountability, all essential components for building trust in research, especially considering the historic and ongoing harms produced through conventional research praxis. By nurturing a collaborative space that respects the unique perspectives of each participant, our DS methodology has sought to dismantle barriers to academic access and foster an environment where diverse voices can freely contribute, creating a rich tapestry of narratives representing the complexities of lived experiences within the communities of focus.

Remaking Access in Multimedia Methodologies

Despite Re•Vision’s prioritization of accessibility, our default praxis of hosting workshops in-person posed inherent limitations. Prior to the online pivot, workshops spanned two to three consecutive and intensive days. This format consistently materialized as less accessible to people with pain, sleep difficulties, or energy limitations; and for people with unpredictable, episodic disabilities, we noticed how a sudden flare could prevent their completion of the workshop. The in-person format also confined access to equipment and facilitator-led training and assistance to workshop hours. Geographical distance added logistical and cost challenges, even with accessible, transit-friendly locations (Mackett, 2019).

Emergency responses to the pandemic showed us the possibility of engaging differently with the research apparatus, and after making the shift we came to recognize the unintended inertia of our established practices. That is to say, our entrenched ways of undertaking research had acted as a “brick wall” (Ahmed, 2017) obstructing consideration of modes of workshop delivery that could bend to the differences that our existing methodology had excluded. Rice, Jones, Mündel, Douglas, et al., 2022 have described how Re•Vision team members participated in an experimental workshop in the spring of 2020 to adapt storymaking protocols to an online format, with the hope of continuing the urgent work of lifting marginalized experiences through pandemic circumstances. They reconfigured the three-day workshop as a three-week process to make room for unsettled bodyminds, disrupted working conditions, and caregiving responsibilities (Rice, Jones & Mundel, 2022). In what follows, we analyze and extend their access interventions by showing how online participation in storymaking research applies to people with EDs specifically, to better understand points of connection between accessibility of the research apparatus and accessibility of the academic world more broadly.

Remaking Access in the Online Space

From an ED perspective, we observed how the online pivot produced options for accessibility matching the ones that workers with EDs most often require, such as flexibility in work location and scheduling (Duval et al., 2020; Vick, 2014). While creating pathways for people to contribute to our collective social life from their homes cannot resolve access barriers for all disabled people, for some, the shift has created a more accessible world. Following Rice and Mündel (2019), we conceptualize the move to working online as an “iterative movement” in the methodology; our intention is not to privilege one format but to understand how the change in practice generated differences in access.

In adapting to the virtual format, Re•Vision researchers and facilitators extended workshop timeframes to span several weeks and incorporated asynchronous elements such as the option to meet with facilitators outside of the weekly group meeting. This allowed storymakers to adapt their participation to their schedules and energies. To facilitate access within the group workshop meetings, we encouraged participants and researchers alike to adopt “relaxed” practices such as taking breaks, moving, making noise, and so forth (Collins et al., 2022). Members of the workshop honoured the rhythms of their bodyminds by lying down, eating and drinking, or changing the lighting, often choosing to describe their access practices to the group. Accessible technological affordances of the online space included automatic Zoom meeting captioning, individual control of the camera, microphone and volume, and options for visual (reaction emojis, silent applause), written (chat and direct messages), and verbal interaction. Breakout rooms created space for facilitators and participants to work in small groups, and participants used these to collaborate, including by recording voice overs for each other’s videos. Where the Re•Vision’s in-person DS workshops had used Macbooks preloaded with Final Cut Pro for video editing, we switched to the web browser-based video editing platform WeVideo for the online workshops. Participants could access the platform at any time from their own devices, so they could work on their videos outside of workshop meetings. Through WeVideo, participants can grant facilitators direct editing access to their project, enriching possibilities for collaboration and mutual support. Each of these elements contributed to creating an inclusive, flexible, and accessible research environment.

Stories of Critical Access

Through the month of March 2021, the i2i post-secondary DS workshop took place online with 12 storymakers, three Re•Vision storytelling facilitators, and two i2i researcher-facilitators. While differently positioned in terms of disability type, race, class, gender, job type, and geography, storymakers (and researchers) shared common experiences of navigating access and encountering barriers in the academy as people with EDs.

At the beginning of the first group meeting, our lead facilitator, Tracy Tidgwell, led the group in grounding exercises. Next, she invited facilitators and participants to introduce themselves, with the option to describe their relationship to ED and share any access needs. To strengthen rapport, challenge the researcher/participant dichotomy, and redress the potential imbalance of power generated by disclosure, facilitator-researchers Lacey Croft and Elisabeth Harrison both chose to disclose their experiences as “in-group” members with EDs and share their access needs (Brown & Boardman, 2011). In doing so, they intended to signal to participants a shared commitment to accessibility. Following this they gave an introductory presentation to frame the experience of working with an ED in the academy. They described the tensions experienced by people with intermittent work capacity while working in an environment characterized by neoliberal technologies like “new managerialism,” that seek to intensify workloads and quantify knowledge production (Rice, Harrison, et al., 2023). The presentation opened a space for participants and researchers to collectively discuss and examine the impact of institutional structures on their lives and work as people with EDs.

Below, we explore participant stories that illuminate varied elements of access in the academy. To accompany the stories, each storymaker has written a reflection on the content of their story, their experiences of the making process from a critical access perspective, as well as their sense of how critical access approaches that keep questions of access open might compare to conventional compliance-based approaches to access in the academy. In line with the research methodology approved by the university research ethics board, DS workshop participants could create an anonymous video or make an informed decision to include identifiable or potentially identifiable personal information. The research participant co-authors of this article have chosen to disclose their identities in their videos and personal reflections.

In the first story, A Pedagogy of Pausing, Kelly McGillivray invites audiences to consider pauses as necessary and generative interruptions in an increasingly busy world. People with EDs often live their lives on the periphery of normative, neoliberal time, and McGillivray recounts how she has needed to take breaks in her academic career due to experiences of grief and loss, caregiving responsibilities, and health difficulties. In How I Show Up, Jen Sebring invites the audience to understand their experience of “seizures, stutters, a faltering gait, trembling limbs, and the world spinning around me” as safety, not symptomatology. They share how they use creative strategies to open new possibilities for disability and work, encouraging a shift away from medicalized and normative perspectives. In the final story, Josh Grant-Young introduces us to Medina’s (2013) concept of a “kaleidoscopic perspective,” as an invitation to perceive the world through multiple vantage points to better understand the access needs of differently situated others.

“Need to Pause”: Crip Time and Non-Linearity

In A Pedagogy of Pausing, Kelly McGillivray recounts how “lean [ing] into the slow” and moving through the world in non-linear ways in response to unpredictability has shown her the value of being, doing, and knowing differently (https://revisioncentre.ca/toward-access-justice-in-the-academy; password: access). She argues that although pauses are often regarded as non-productive, they can open space for questioning established ways of doing and for learning about new approaches. She asks the audience to question the push to return to a “normal” that excludes so many, and instead to make space for multilayered ways of being in the world.

Creator’s reflection: My story is an invitation to engage in conversations about inclusion and diversity across time(s)pace in academia during a pandemic. It is a meditation on pausing, asking us to slow down amidst the pandemic’s urgency and reflect on our relationship with hyper-productive, fast-paced academia. In pandemic time, lives as we had known them changed pace and were put on pause. In that pause, my story made space for difference and for re-imagining multi-layered and different ways of being and doing in academia, in online spaces. This move to “pandemic pedagogy” actualized long fought for, and long denied, accommodations that disabled students and faculty have worked for and/or have stealthily practiced ( Samuels & Freeman, 2021 , p. 246). I have always, in Rosemarie Garland-Thomson’s (2011) terms, “mis-fit” in academia and had to expend time, resources, and physical and emotional labour to advocate for access to working remotely, taking breaks, and having a flexible schedule. I have to pause, to rest, fill the well, recover.

In Decolonizing Educational Research, Leigh Patel (2016) argues for the necessity of slowing down and pausing as we undertake our research, to allow space and time to understand, question, and analyze the forces—such as colonialism, racism and white supremacy—that impact us and our work within our fields and institutions. In the foreword to the book, Eve Tuck describes this approach as a “pedagogy of pausing” (Tuck, 2016, xii). Using Patel’s pedagogy, I wanted my film to explore experiences of pauses as necessary and generative interruptions in capitalist, neocolonial times and ways of being, doing, and knowing. This is because pauses hold potential for learning if we dwell in them. For instance, pauses shaped the processes of creating my video: as I would stop, reflect, rest, digest theory, lie down, take breaks, I began to experience the moments where time slowed down or stopped entirely as generative of the kind of slow scholarship that can unfold gradually across weekly workshop sessions rather than in-person in compressed time frames.

In contrast to an academic system that pushes disabled people out, I experienced the workshop as a cripped space that invited people in. We welcomed, anticipated, and adjusted our collective access practices through regular check-ins to ensure everyone’s access needs were being met—co-generating an evolving, flexible process that moved with the non-linear rhythms that characterize our embodiments. We supported each other in lying down and/or turning off Zoom video, and the facilitators allowed for flexibility by working with us one-on-one in our own times and (s)paces in-between sessions. Centering access also created an opportunity to connect more intimately with facilitators and participants, as no one had to use additional resources—bodily and materially—to be included and supported.

A Pedagogy of Pausing refuses a fixed, closed (linear) ending and instead leaves us with a plea: please resist the return to “normal.” While I wish the normative world considered disability all along, my story imagines the possibilities of retaining the accessible practices created in the midst of COVID-19. Rather than “returning to normal,” it builds on what I have learned and moves toward a collective understanding of access as necessary, flexible, evolving, and deeply connected with decolonizing academic spaces through disrupting hegemonic knowledge and meaning-making processes.

As the neoliberal ideological, policy, and organizational shift that began in the 1980s has become entrenched across in the post-secondary sector in Canada and elsewhere, academic institutions have held faculty and staff to ever-increasing expectations for productivity (Attinello, 2009). This has meant requiring post-secondary workers to do more with less as public funding has been reduced by austerity budgets, reallocated away from (ostensible) priority areas of teaching and research and toward the expansion of administration, and/or redirected to facilitate private profit-taking (Fallon & Poole, 2016; Fanelli & Meades, 2011; Peetz et al., 2022). For faculty, precarious contract work is now the norm, even as universities and colleges demand larger teaching and supervision loads, impose increased pressure to win grant funding, and set higher standards for research and publication records (Rosa, 2022). Together, these factors result in time pressures that make the academy a hostile environment for people whose circumstances and/or bodyminds do not allow them to meet these unrealistic demands, including many people with EDs (Rice, Harrison, et al., 2023). Despite the existence of laws mandating accommodations and non-discrimination, those who cannot push through are all too often pushed out of the institution (Rice, Harrison, et al., 2023).

McGillivray’s reading of the pedagogy of pausing through the lens of ED underscores the significance of temporal considerations as a critical facet of inclusion and thus resonates with the notion of “crip time” (Kafer, 2013; Samuels, 2017), the embodied/enminded time experienced by disabled people:

Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time (Samuels, 2017, para. 5).

Initial responses to the pandemic helped to dismantle barriers created by neoliberal time and open new dimensions of access through a pedagogy of pausing—an approach rooted in the understanding that we can learn valuable lessons from the affordances of people with disabilities. Despite significant advancements in accommodating accessibility needs during the pandemic, the prevailing narrative of “exceptional circumstances” implies that these improvements are ephemeral, poised for reversal upon the return to a perceived state of “normalcy.” As Ellcessor (2022) notes

The core ideological work of emergency, reinforced through its constant [technological] mediation, is to uphold the existence of a “normal” state of affairs and to offer a path to restore such normalcy. Of course, such normalcy is not universally available; insofar as emergency is defined in terms of normalcy, it entrenches and extends inequalities that marginalize the many who are the most vulnerable (p. 5).

To this point, the buzzword of the pandemic, “pivot,” itself connotes a transient departure from established norms while retaining a core continuity, subtly revealing a persistent inclination to revert to the pre-pandemic status quo. Many institutions that initially embraced change are now reverting to established operational paradigms that reinforce ableist structures and dismiss the enduring need for flexible and accessible work and research environments. This regression is not rooted in logistical impracticality but rather driven by a financial imperative to preserve the traditional “campus experience” model. This model heavily relies on revenue streams encompassing deregulated international student tuition fees, on-campus accommodations, food services, events, and even parking facilities (Peetz et al., 2022).

For those with episodic disabilities and their advocates, a temporary “pivot” is thus profoundly insufficient. McGillivray’s story emerges from this transformative period to remind us of the importance of sustaining access practices, even beyond times of crisis, rather than pivoting back to less-inclusive ways of working. The Re•Vision Centre firmly commits to preserving the gains in accessibility achieved during this period, rather than “snapping back” to pre-pandemic practices. This commitment extends beyond a momentary shift and aligns with a broader ethos of equity and inclusivity, where disability affordances become an integral part of our institutional fabric, and the centrality of including disabled people’s perspectives is not just a reaction to emergencies but a steadfast principle of our operations.

“Showing Up” Differently Through Activist Affordances in Work and Research Spaces

In their video, How I Show Up, Jen Sebring describes how they “show up” for their colleagues—and themselves—when they cannot be physically present in the workplace due to flares in their EDs (https://revisioncentre.ca/toward-access-justice-in-the-academy; password: access). They illustrate the ways that they contribute by affirming, holding space, thinking, reading, and writing with colleagues, all while working from bed or taking needed rest breaks. Applying Erin Manning and Brian Massumi’s concept of the “enabling constraint” (an action-limiting rule put in place to facilitate a creative process [2014, pp. 92–97]), they use the mismatch between their bodymind and external expectations to create access for themselves. In doing so, they push back against an uncaring neoliberal institution, protecting their capacities by working within them despite the relentless pressure to be—and be perceived as—productive.

Creator’s Reflection: My story takes up an interpersonal interaction of being (gently) reprimanded for not “showing up” to in-person meetings as an opening for re-imagining access and its relatives: illness, diagnosis, presence, and participation. I wanted to illustrate the multi-faceted nature of living with ED and how it shapes and is shaped by everyday, taken-for-granted assumptions and expectations. With these assumptions, significant labour required to just exist through a flare of symptoms along with my attempts to contribute to and collaborate through them gets erased. I wrote most of my script shortly after the interaction mentioned above—out of absolute frustration that my efforts to keep up, to contribute, to read and write, and be in community might never be recognized because it doesn’t take the shape of my physical presence in a classroom at all times. If I can’t get out of bed in the morning, if I can’t navigate the space of my own home due to disorientation, how can I be expected to make it to campus? Looking back on the experience that serves as inspiration for my story, I recognize my struggle as the result of living with embodied and embrained difference, exacerbated by narrow conceptions of “accessibility” and “accommodations” that do little for illnesses that are unpredictable and not easily recognized or legitimized by biomedicine.

Amid the turbulence of a flare, I experience the push and pull of shame and guilt for not showing up in the ways the neoliberal academy expects me to, while also trying to create and affirm new ways of understanding, relating to, and making space for the particular rhythms of my bodymind. This video is a way of recognizing the labour and care I afford myself when no one else does, the ways I show up that no one else may ever see, and affirming the wisdom of my bodymind for asking me to slow down and tend to the parts of being human (e.g., the embodiment of grief) that we are expected to shove down and move through in favour of “productivity.”

The irony of looking back on this time in my life, in returning to my musings on “how I show up,” while living through COVID-19 where remote and hybrid gatherings were expected—an option that would have ameliorated much of my struggle before—is not lost on me. Although I am wary, like many other disabled and chronically ill folks, that the return to “normal” means the end of remote access, I want to see this as an opportunity too, to imagine different ways of being together. To expand our conceptualizations of what access means and looks like, and the ways we might collectively enact it in ways we might not have dreamt up before.

Sebring pushes back against the idea that only typical, expected ways of working count, showing that disabled people’s innovations can lead the normative world through the discovery and enactment of what Arseli Dokumaci has described as “micro-activist affordances of disability” (2013), whereby disabled people use embodied knowledge to create access for themselves through improvisation within their environments. As Dokumaci explains, these micro-activist affordances have transformative potential in that they reveal unexplored possibilities for action and “subver [t] the collective way that we, as a society, have decided to share this world and make use of its material offerings” (p. 80). Sebring explores the work-related disability affordances opened up by the pandemic-induced shift, showing how remote access and asynchronous scheduling have facilitated collaboration, community-building, and participation for people with EDs. These adaptations allow space for workstyles that accommodate energy limitations and chronic pain even if they do not match normative expectations for work. Their experience also reveals the persistence of attitudinal barriers within academic and broader contexts that reinforce ableism and prioritize normative practices. As the forces of neoliberal capital have enforced an end to states of emergency and required a “pivot back” to “normal” (Ellcessor, 2022), it becomes more crucial to recognize the unique contributions of disabled workers.

Adopting a Kaleidoscopic Perspective on Difference and Access

In his story, A Kaleidoscopic Perspective, Josh Grant-Young explains that it can be difficult for people who do not live with an ED to understand its everyday impacts (https://revisioncentre.ca/toward-access-justice-in-the-academy; password: access). Moreover, as he points out, even people with EDs do not all share a common experience. Grant-Young argues that considering the diverse stories of people with EDs alongside experiences of racial, gender, or sexual alterity can expand and thicken our understanding of systemic injustices and oppressions.

Creator’s Reflection: When a sighted person looks inside a kaleidoscope they see “many colours, many vantage points, a multiplicity of perspectives.” But what does this have to do with episodic disability? My story begins with a quote by social epistemologist José Medina, who articulates that in addressing injustices we need “a kaleidoscopic consciousness that remains forever open to being expanded … a subjectivity that is always open to acknowledge and engage new perspectives” ( 2013 , p. 200). The kaleidoscope shifts and transforms in the background of the video, acting as a metaphor for ways of seeing difference and disability through different lenses, ever-changing as we allow perception and imagination to expand.

I also included a personal reflection on the kaleidoscopic nature of my own episodic disabilities: living with PTSD, psychosis, and depression. Much like the kaleidoscope’s colours, my own perceptions of the world are mutable, resulting in my workdays sometimes becoming unworkable or even intolerable. But my own experiences with episodic disability are often invisible, so how can others begin to understand them?

While I embrace Medina’s kaleidoscope for the way it enables me to understand self-other relations as in dynamic and evolving relation ( 2013 , p. 201), his use of “meta-blindness” as a metaphor for ignorance or a refusal to know jars me. Like other disabled scholars and activists ( Schalk, 2013 ), I have come to understand this as an (ironic) instance of epistemic injustice toward people who are blind or have low vision—a reminder that we all move through the world with some degree of opacity to others and ourselves.

The kaleidoscopic vision to which Medina refers initially humbled me by demonstrating the limits of my perspectival world, but it also encouraged me (despite these constraints) to take on new perspectives and cultivate a heightened sensitivity to injustices and insensitivities. After all, different experiences of disability and oppression beget different vantages. While we cannot—and likely should not—claim full lucidity (complete understanding of all forms of oppression), engaging with how we understand the world is crucial to cultivating not only new ways of perceiving, but solidarity too.

Grant-Young’s engagement with Medina’s work reveals how when people with EDs are pushed out of a space by inaccessibility, the broader community also loses out, missing the opportunity to learn from disability experiences. Because his reflection also foregrounds differences in the social locations and experiences of people with ED, it encourages us to understand access as always relative to people’s particular embodied and enminded needs as they change across time and context. This speaks to Mia Mingus’ concept of “access intimacy” (2011, 2017) which asks us to consider who is present, who is missing, what each person can contribute, and what is needed to create space for everyone. In the context of DS, shifting to an online and extended time format with numerous additional access practices (as described above) allowed for the meaningful inclusion of episodically disabled participants who might otherwise have been excluded from contributing their perspectives.

Aspiring to Access Justice

While online options have sometimes been considered as a means of making do during a crisis, we argue that our revised research and work approach fostered a transformative “crip timescape,” contributing to the enactment of critical access and its articulation in creator’s stories. Participant testimonials and stories, including those in this article, underscore accessibility improvements from our transition to an online format and experimentation with different scheduling strategies. Re•Vision’s revised process offered a means for participants to engage even if their episodic conditions flared or if they faced other obstacles to attending. The use of pre-recorded materials and option to reschedule one-on-one sessions with facilitators, provided participants with asynchronous options. McGillivray describes how the access praxis interwoven through the workshop showed up in her film. Here, the storymaking process and her story’s content “worked together in a symbiotic relationship to articulate the generative ‘pause’ that informs my experience of the workshop’s methodology, of the pandemic, and of disability.”

The workshop’s generative capacity and participant’s comfort in the virtual space were not surprising. Disability communities often report experiencing online spaces as more accessible as they offer alternative ways to interact without material accessibility issues (Rainey, 2015, pp. 105–106). Watching McGillivray’s video together as part of our collaborative analysis, we reflected on the pedagogical and research expectation that we synchronize to a strict schedule, without creating room for alternative rhythms. In such settings, “being together” often translates into subjecting ourselves to rigid dynamics and into disciplinary relationships with our bodies, minds, and each other (e.g. everyone going for a break at the same time). In contrast, coming together in the online space provided the opportunity to experiment with being together differently, embracing our rhythms in affirming and vitalizing ways. As Grant-Young noted, “compared to other workshops, in this space, we were generating different—not necessarily antagonistic but complementary—rhythms, allowing for new ways of sensing and of a multiplicity of different perspectives. In the process of interacting with other rhythms and being with other people, we were able to expand our interpretive lenses and prospectival position.”

Grant-Young’s analysis suggests that individualizing experiences do not negate the potential for collectivity. Embracing diverse rhythms and alternative ways of being together challenge academic rigidity. Using new interpretive lenses to envision possibilities for collaboration, participants co-create access through collective witnessing, support, and appreciation of unique disability affordances.

Conclusion

Against a backdrop of, and in contrast to, a continued push to “return to normal” in academic and research spaces denying access to remote work, our experiences of remaking the DS workshop illustrate the access possibilities of disability-led praxis. Participants with diverse backgrounds, perspectives, and abilities enrich the storytelling process and reveal intersections of disability and methodology. Through an examination of participants’ videos and storied experiences in the post-secondary DS workshop, we uncovered an interplay between research and storymaking processes and the narrative content of stories: the generativity of the “pause” built into our storymaking practice revealed itself through participants’ stories and reflections on the pandemic, work, and disability. While centring access in research practices cannot fix all the problems of post-secondary institutions, it can exemplify possibilities for broader change.

Moving the DS workshop online became an opportunity to interrogate our established practices in service of enacting critical access. The online format enabled people with EDs to participate in the i2i project from home, allowing us to learn from their experiences. The online format granted greater autonomy and control over participation, resolving many of the accessibility issues that arise within in-person workshops, and allowing participants and facilitators to take part in ways that responded to embodied/enminded needs. Because EDs are common and increasing in prevalence (Harrison et al., 2022), similar approaches to research design will interest a growing population of researchers and research participants with EDs.

Retaining online access remains crucial for many people with EDs and others, but we must acknowledge that the online model is not without its limitations. Moving work and research online requires access to technology and a safe, stable, and comfortable space for remote work. To facilitate technological access in the i2i project, we established an “access fund” to provide participants with equipment such as webcams, laptops, tablets, and to cover data fees. Despite efforts to reduce technological barriers, remote workshops remain less accessible to those who are not familiar with technology and/or who do not have the necessary equipment, including broadband internet access, which remains unavailable in some areas of Ontario (Basen, 2021). Further, an online approach may be inaccessible to people without a private space to work, particularly if the activity involves sensitive information. Additionally, it might not address access requirements for people with cognitive conditions, energy-limiting conditions, or chronic pain, where navigating digital platforms and prolonged screen time can present barriers. Therefore, offering hybrid and/or in-person options alongside online workshops could accommodate different circumstances. In the context of the ongoing pandemic that poses continued risks, particularly to disabled people (Adler-Bolton, 2023), as well as a reality in which wildfire smoke events have become increasingly commonplace, practices that make in-person work safer and more accessible include wearing respirator masks and improving air quality (Hamilton, 2022; Tanne, 2023).

Participating in the i2i workshop influenced how we understand access as a dimension of research methodologies. Rather than representing a temporary pivot in an emergency situation, it highlighted the need to prioritize access in research design, responding to the diverse needs of both participants and researchers, as when research and work practices do not account for the needs of people with episodic disabilities, they risk excluding valuable perspectives. We can create spaces that maximize inclusivity and innovation by budgeting and planning for accessibility from the beginning. The Re•Vision Centre will advocate for the maintenance of these changes to research and workplace practices beyond the immediate context of the pandemic. Specifically, Re•Vision commits to offering remote and in-person options of varying lengths of time, coupled with making widely available our online digital resources and video training modules through the Re•Vision Storymaking Web site (available at https://revisionstorymaking.ca/).

Our experience of revisioning the DS methodology and embracing access justice in research practices has demonstrated the potential for creating more inclusive spaces within academia. By valuing diverse perspectives, acknowledging the limitations of different formats, and actively designing for accessibility, we can create research spaces and practices that center access and challenge notions of returning to a “normal” that perpetuates exclusionary practices. This approach is necessary for the well-being and inclusion of individuals with episodic disabilities and contributes to a more equitable research landscape.