The Place and Pace to Remember: Keeping What the Pandemic Has Given Us

[Content warning: This article mentions suicidal ideation.]

Context

We are three individuals/friends, each variously located in relation to academia. At one point in time (2016–2019), we were all at one institution together, and we collaborated/did organizing/programming around access and academic ableism. While we are no longer at that institution, this reflective and conversational piece is a site of memory work that vitally preserves and reanimates some of what we were working towards. 

We begin with the question “What do we want to keep that the pandemic has given us?” We answer with “the pace and place to remember,” because we came to understand that our collective memory work around our work with the late Stacey Park Milbern, over the course of the time that we were writing this, is in itself a site of disability culture and disability justice work. 

Largely cowritten in 2021, this reflective piece itself serves as a snapshot in time, at one stage of the pandemic, reflecting upon earlier experiences. All authors are lead/co-authors. We worked collaboratively, fluidly, collectively, and interdependently. Our names appear in alphabetical order. 

Introduction

What do we want to keep that the pandemic has given us?

The question itself seems ludicrous. Don’t we want to forget that any of this happened? Don’t we want to go back to “normal”? Don’t we all just want this to end? 

When the three of us looked back and tried to answer this question, we couldn’t do so without bringing the late Stacey Park Milbern, a visionary and leader for disability justice, into our collective memory. When we thought about the time we had with Park Milbern—reckoning with and organizing around ableism in academia—the year before the pandemic started, and the year before she passed, we realized that what the pandemic has given us, more than anything, is place and pace. Place to keep asking questions and a place for reflection that we have been strangely gifted during this time, and the pace with which to do it. 

In this collective essay, we take up Moya Bailey’s 2021 discussion of an ethics of pace to helpfully frame our thinking. We believe such a framework will benefit the continued mission to create greater access and inclusion of our multiply-marginalized, disabled community members. In her 2021 essay entitled “The Ethics of Pace,” Bailey writes, “The ethic of pace I want moving forward in my life and in my academic work is a slow and sustainable pace, one that moves at the speed of trust and is not driven by capitalistic imperatives.”¹ This desire to move through academia with a slow and sustainable pace resounded for us, given our own bodymind experiences and identities in academia. 

We first encountered and began to reckon with the notion of pace in relation to academia through a February 2019 capacity-building event with Park Milbern, titled “Leaving No Body Behind: Accessibility as a Practice of Revolutionary Imagination.” Collaborating to organize and welcome Park Milbern to the institution where we previously worked gave us the context to deepen our relationships with one another as colleagues, but more importantly as trusted friends. The motivation to continue our collaborative energies moved us then to discuss our disability justice advocacy in academia in October 2019 through a National Women’s Studies Association (NWSA) session titled “Disability justice in the Academy: Is Transformation Possible?” Now we are here, as we collectively write out what the pandemic has given us. The pandemic conversations through Zoom video calls and an ongoing group text thread granted us the opportunity to reflect on our past organizing efforts that included Park Milbern’s impactful presentation and our NWSA session. 

In this essay, we weave our experiences and memory work for authentic and honest conversation to answer the original question that prompted this collaborative piece, “What do we want to keep that the pandemic has given us?” This collective essay mirrors the nature of our colleague-friend relationship and interdependence across our positionalities, roles, and experiences. This essay is an opportunity for us to connect through a means that does not feel like work, but an opportunity to pause and reflect within the hegemonic capitalist structure we coexist within, and that continuously forces us to separate the body from the mind. 

Our conversations happened when they could: when we had time, when we wanted, and when we felt up to it. When we came together, it became a place of remembering. Our memory work, unfolding in the conversation below, remembers and questions. How do we build justice when we don’t have places to remember? We took note that in our places—all tied together by higher education—there seems to be a goal to not have institutional memory that remembers how, why, and by whom justice work is done. Without memory places, how do we build both a history of justice work and accountability in higher education that this justice work is seen through? How are we to build justice and healing in higher education when the place is designed so that we can’t remember things? How do we transform higher education when it’s clear that people are disposable in it, when we have no place to process what we have lost, and we have to start again, and again, and again from scratch? We know that our questions are not ones that can be answered, but rather we hope our desires for justice and healing in higher education, contrasted with the willful forgetting of higher education, will document the violence that is enacted on each of us through this process.

What do we want to keep, that the pandemic has given us? 

The place to and the pace with which to remember. 

Places to Reflect on “The Pace of Our Work” in Higher Education 

When we came together, the three of us found ourselves reflecting on pre-pandemic experiences with Park Milbern that had given us the language and tools to make sense of this peri-pandemic time. In particular, we remembered the above-mentioned 2019 workshop led by Park Milbern, “Leaving No Body Behind: Accessibility as a Practice of Revolutionary Imagination” and a panel that the three of us subsequently organized with Park Milbern for the National Women’s Studies Association conference in San Francisco that November entitled “Our Collective Ethnography: Disability Justice and the Academy. Is Transformation Possible?” These two places gave us a foundation to think and dream about pace in the context of higher education, and we do so by holding our “critical relationships” that challenge us to imagine new realities in higher education.² In her 2019 workshop, Park Milbern’s description and framing of ableism in the academy completely reoriented our individual perspectives and relationships to academia. Park Milbern gifted us with the idea of the pace of our work with the following discussion: 

So what a lot of disability justice activists have been doing [is] to challenge our culture and expectation around even the pace of our work. So for example, if we are working with direct action organizers, we have been asking people to have disabled people and elders in the front of the march, leading the march so that the whole march is going at the pace of the slowest walker. Because at Berkeley what has happened the march goes really fast and people get left behind and then the people who are left behind are kind of left alone to deal with the cops. So, we want to ensure safety for everyone by everyone moving at the same pace as a group. We can think about that on campuses too.³

Thinking with Bailey’s 2021 essay alongside Park Milbern’s 2019 comments reminds us that in our universities, the pace of production is set by the unreachable standards of capitalism, and that it is easy to fall behind in higher education when the goal is unrealistic and inhumane. Reflecting on this example from Park Milbern together with Bailey’s observation about capitalism’s “seemingly unquestioned ethos to make us produce more and faster,”⁴ we reflect on how in higher education, too, those of us who question or challenge this capitalist pace of production are punished, sidelined, made to feel lesser than—in many ways, “left alone to deal with the cops.”⁵

CitingWendell, Bailey reminds us that it is capitalism itself that constructs disability, making “disability where there was none because of our need for speed.”⁶ If disability is socially  constructed by the workings of capitalism, so too can we construct places to challenge its impact in higher education, and establish an ethics of pace, our pace, human pace. Together, it seems like we can sculpt the world that Park Milbern fought to bring into existence, if we are able to challenge our communities and our institutions to create places to reflect deeply on the “pace of our work.” 

Emily

I’ve tried many, many, many times to sit down and write this. I’ve wanted to write about this—our knowing one another and our collective attempt to create something vibrant, alive, and accountable as Liz, Ria, and I tried to intervene on our campus via the work of Park Milbern and other disability justice leaders. It seems like another world when we collaborated and grew to know and care about one another and our shared vision and hope for the institution where we worked. Each time I’ve tried to write about what we shared, thoughts of “What Was Happening” in February 2019, the time when our efforts were culminating, have filled me, refiring the neural pathways that trauma creates and that lead to panic and freezing.⁷ I remember texting Liz and Ria one of the times that I tried to sit down and write this piece—that I needed to reframe this writing together “as an act of love and resistance to all that is toxic and drains us,” versus being “work” (words and understanding that emerged in one of our text threads). And so it is with this love that I also remember, and by remembering, bring back into existence our relationship and previous, collective efforts to learn from and with disability justice scholars/creators like Park Milbern. I’ve tried to ground myself in some of the principles of disability justice while writing this piece together, as Liz, Ria, and I have practiced interdependence, of lifting and carrying one another, of centering the needs of whomever seemed to be struggling the most, and as each of us has had varying constraints on our lives (COVID, providing familial support, parental death, and work instability and unsustainability). In this way, my writing here becomes a healing story. I hope. And the story of our kinship that is both alive and that also exists in memory.

I remember the feeling of such relief—profound relief washing over me—when Park Milbern came to campus for this event in February 2019. Although I understood the term ableism—I have experienced ableism, and I teach about and name ableism—considering what this could look like across so many different campus spaces was something so many in the room with us that day never thought of before. Park Milbern’s voice and the profound, critical, and essential words about disability, access, collective support, and interdependence filled and blanketed me with relief and comfort. Even in the midst of What Was Happening, being in that room, listening to and learning from Park Milbern, and with those people on campus who provided safety and care, made me believe in possibility.

It was later in the spring of 2019 that we proposed a panel with Park Milbern to the National Women’s Studies Association (NWSA) annual conference, which was being held in San Francisco the following fall. We wanted to explore, from each of our positions, the question “is disability justice in the academy really possible?” Park Milbern’s writing framed our reflection around that question, which we collectively wrote (and dared to dream) in our panel abstract:

The heart of any critically-oriented effort is the interrogation of who society values (or doesn’t) and why, and which bodyminds experience autonomy, mobility, resource, and safety, and which do not. An analysis of ableism, racism, and classism is necessary for this, and yet many diversity efforts at post-secondary institutions dismiss these systemic understandings, missing that much of the violence communities of color face is not only racist, but ableist at its core. We are experimenting with “cripping the campus,” primarily by centering disabled people of color and doing the fundamental internal change work needed to transform an academy hostile to us.⁸

In the fall of 2019 (a few months prior to the pandemic lockdowns across the world), our NWSA panel also articulated concepts such as “diversity as a strategy,” versus an endpoint. Liz’s words from our panel stayed with me throughout much of the early pandemic, as What Was Happening was still unfolding.⁹ She had said, “Perhaps liberation starts with each member of society committing themselves to the liberation of all people—to provide tangible resources and acknowledge the beauty and resiliency within the communities we are a part of and are advocating for.”  

Even with the tremendous loss of life around the globe, which highlighted the structural inequities experienced by multiply-marginalized, disabled people, the lockdown orders began a period of healing for me, as everyone, except essential workers, needed to stay home. In March of 2020, I began volunteering for the Disability Justice Culture Club (DJCC)—a local mutual-aid group founded by Park Milbern—with the “power to live” campaign during gas/electricity shut-offs and wildfires in the fall of 2019.¹⁰ Throughout the pandemic the DJCC paired volunteers with multiply-marginalized, disabled elders. Throughout the eighteen months I volunteered for the DJCC, while I provided food shopping, prescription pick-up, and delivery for households that included disabled, BIPOC, and elders, I was struck by the privilege of what I was experiencing with What Was Happening in the broader context of trauma and loss everywhere.  

It is difficult for me to use words to describe the memory work taking place between Liz, Ria, and me as we come together on Zoom, in text, and on these pages. I know that what I experience, remembering here—as I type, delete, insert comments, or send a text asking for gentle feedback—is a form of justice. It allows me to come back to the question posed earlier—“is disability justice in the academy really possible?”—and consider that perhaps the answer could be yes, if only our institutions allowed for the place and pace to remember. 

As I come back to our memory work here—revising and editing even months after we began—I’m struck by the ways in which our institutions specifically work in ways that force us to forget. I have joined the ranks of contingent faculty over the last three years, a position that viscerally reflects our disposability within the work of the institution. I have tried to make financial ends meet by teaching thirteen courses for five different institutions during the 2021–2022 calendar year (in addition to creating/building a consulting business and other professional activities). I tell myself that I had some power because I was choosing what I would and would not teach (and am only teaching courses that allow me to center disability and its intersections across a range of contexts). But what I really am is exhausted in a way that I cannot describe. I loathe opening up my laptop each day (because I do need to work seven days a week if I am going to only survive), and I have not valued myself in the way that I want to. So how am I to have the place and pace to remember? Perhaps it is only by choosing to leave academic institutions of higher education entirely that I can find these places. Right now, I am not sure. 

I used to believe that by placing disability within justice frameworks—or perhaps by framing justice within intersectional frameworks that center disability—we could work towards liberation in university places. Now, when I think about justice and the possibility of transformation, I know that having the place and pace to remember individually and collectively is necessary—and is almost an impossibility when enacting this work in university places. Instead, I/we must return to relationships—both individual and collective—that have sustained, nourished, and healed me/us. And this requires place and pace, is only created through place and pace. I am grateful that this collective essay is a place for relationship and interdependence; and has been shaped by a pace that is fluid and supportive, and that cares about each of us, from our various positions and experiences.

Liz

Park Milbern believed in direct action and subverting systems of oppression by all means necessary. She confronted police in marches and demonstrations and took to the streets using her bodymind to fight for disabled people, through the interconnected fight for housing rights, immigrant rights, and queer and trans liberation that is BIPOC led and centered. 

While Park Milbern advocated for mutual aid organizing, she also was very critical of the fact that the mutual aid organization should not have to exist in the first place. It exists because there is not adequate support for disabled, elderly low-income BIPOC communities by the government entities. She states, “Disabled queer and trans people band-aiding infrastructure for community is NOT romantic. It is not #activistgoals. It means the system is failing. It means inaction and disregard are leaving people in harm’s way. It means only those connected to our networks or finding resources themselves are getting what they need.”¹¹  We rely on each other for mutual support, love, and care to mitigate for the government entities’ shortcomings. Park Milbern made me feel like there is always a way to make change. She was unapologetic about what she needed and how she sought to be loved. I will forever be grateful for her life-sustaining teachings. When the pandemic hit, I knew that it was imperative to continue to apply what I learned from her and the disability justice community.  

Honestly, it is difficult to write about the gifts that the pandemic has illuminated. It is difficult because of the immense human and resources loss marginalized communities experienced and continue to experience during the ongoing pandemic. Difficult also in the sense that the writing process surfaces personal topics that I continue to grapple with and that I will expound on later in my portion of the essay. I know that without writing this out now, I will be folded into the constant state of forgetting that universities are accustomed to practice in order to destabilize organizing efforts that support disabled and multiply marginalized communities. Through writing this, I urge myself to remember the moments, revelations, and lessons that came to me as I navigate this new collective experience. I realize now that this is the moment to hold firm my beliefs, write to affirm that we can create a more caring and collective world despite all the individualism that this country espouses. As Mia Mingus shares in her blog Leaving Evidence,

We must leave evidence. Evidence that we were here, that we existed, that we survived and loved and ached. Evidence of the wholeness we never felt and the immense sense of fullness we gave to each other. Evidence of who we were, who we thought we were, who we never should have been. Evidence for each other that there are other ways to live–past survival; past isolation.¹²

Mia Mingus calls upon us as disabled people to leave evidence when possible, because institutions will forget we ever existed. My part of this essay serves as a piece of evidence for both the losses and gifts during the pandemic. Through my student affairs leadership as a neuroqueer person of color my insights about accessibility, community care and disability justice are amplified to serve our communities in creative and meaningful ways. The way that the pandemic has shifted our work environment gives me the ability to advocate for LGBTQ+ communities, people of color, disabled people in new ways. 

The need for accessibility is a necessary aspect of work now, whereas before it was an afterthought. By incorporating CART captioning, ASL, image descriptions, and more to our daily use of Zoom as a meeting platform, and through reassessing our policies to be in alignment with anti-racism efforts, accessibility practices have become more central.¹³ The higher education work landscape should not go back to how it functioned previously but rather move towards a hybrid and flexible work model that accounts for a true work life balance. I insisted on keeping a hybrid work model to accommodate and retain our most marginalized staff members. 

During the early months of the pandemic, I had the ability to pause and reflect on my own life during lockdown. The slower pace granted me time to share my thoughts about policing on campus and in this country. To me, disability justice is so closely tied to racial justice and prison abolitionist teachings. I share a short piece of a letter of concern that I wrote to Campus Public Safety Committee sparked by their request for feedback amidst the murder of George Floyd (Rest in Power) and ongoing tensions with campus policing:

I am a staff member at UCLA who is seeking to see an active transformation of an institution that espouses values of equity, diversity, and inclusion. The true reality for me as a staff member at UCLA is consistently hearing from my students of color express fear, rage, and confusion as to why the police force continues to enact violence on Black, queer, trans and disabled community members across the country. Who is public safety actually serving? Who specifically is seeking to build community with the UCPD? My role requires that I serve a diverse student population and where we aim to receive Hispanic Serving Institution designation. As a student affairs professional I am key in retaining and recruiting students to UCLA, sadly not UCPD. We deeply need to reconsider where our primary funding is allocated on campus that is key to the sustenance, well-being and success of our most marginalized students on campus.¹⁴

I also asked myself questions about my gender. The question that came up for me that helped me process is, “What is my gender when no one is around?” My partner and I were locked down and I only had myself to face. I reflected on my past and realized that there are so many socializations that shape our selves/genders. I started to pick apart what worked for me and what did not. Most labels given to me by others. This question led me to realize that I identify as agender, and the woman category no longer served my bodymind. Not as a rejection of the past, but more of a homecoming to who I always felt deep inside my inner being. I then realized that many people around me were also navigating coming into their transgender and nonbinary identities during these times of isolation and quarantine. I experienced gender euphoria for the first time and it felt amazing to explore myself through clothing, makeup and more. It’s exciting to even write about my gender exploration now because it makes me realize that even through times of most loss we still continue to grow in stillness. 

I’ve been able to cook more at home meals, cut down on the draining commutes in Los Angeles and I now can appreciate the reconnection with my parents. My relationship with my parents was strained because they were struggling with the reality that I am queer. It required that I put strict boundaries on how I interacted with them for my own mental well-being. I deeply missed them during this time of not communicating with them. They realized that I was not going to change for them, so they started to come around more. Then they both got Covid and I felt like the progress we made would disappear because I could not see them anymore. I then realized that it made our connection stronger. Thankfully, we are now moving towards healing our relationship. All aspects of what the pandemic has given to me are important, but the growing relationship with my parents is by far the biggest blessing and part of the larger goal to continue to heal during these times of hardship.

As I think about our original question—“What do we want to keep that the pandemic has given us?”—I realize that this collective writing process is a way to move past isolation and is healing medicine for me. It is a true gift to be here today to write this piece with my colleagues and friends who teach me every day that a caring and just world is possible. The three paragraphs here are a glimpse into my ongoing healing process that I understand as gifts now. My healing process which includes fighting for racial justice on campus, finding a greater sense of home in my gender, and rebuilding a relationship with my family. It is in our meetings where we discuss curly/wavy hair tips, laugh about silly Zoom filters, and share higher education woes that make me realize that we will be alright.

Ria

When Stacey Park Milbern came to our university on February 12, 2019, we had issues with our camera. 

We had wanted to record the session for the many university community members who were not able to attend and because we wanted to hold on to Park Milbern’s wisdom—educational gold that we knew would give to us for years to come. About halfway through, the camera stopped working, so we missed documenting a large part of the talk. I caught five minutes and twenty-eight seconds on my phone. This is one of the only saved videos I have on my phone, so the little preview box pops open up every time I am looking through pictures. After Park Milbern died in June of 2020, I had been avoiding this video and its reminder that we had lost a powerful, young voice for justice all too soon. 

As we come together to write this piece, I open the video up to witness Park Milbern. 

In less than 6 minutes, Park Milbern explains the term “bodymind,” labels the preference of some bodyminds over others as eugenics, links the ongoing existence of this eugenics to capitalism, implicates the healthcare system for forcing people with disabilities to stay jobless so they can remain eligible for Medicare (the only insurance that allows for the long term care and personal aids that many people with disabilities need), and how with an intersectional framework we can see that ableism works hand in hand with all the other -isms—with the help of culture—to keep power in place. 

All of that in five minutes and twenty-eight seconds. Slowly, calmly, collectedly, delivering critical disability studies and disability justice to us without once naming them. Allowing us to get to the reality of “no body left behind” (the title of her workshop) through examples, experiences, histories rather than concepts. Weaving together complex theories through embodied knowledge. Park Milbern used this piece as an introduction to get us talking about how ableism is embedded in our campus culture. “Who is able to participate on campus? What does participation on campus require? Who is thought of as a leader, and who is not? All these questions . . .” She gave us ten minutes to discuss in small groups. 

What was so important about Park Milbern’s workshop was not that it was the introduction to critical disability studies and disability justice that many of us needed, nor that it gave us the place to think about ableism in the academy, but that she brought both of these up in the same place so that we could no longer separate critical disability studies from critical university studies. We had to see that these were in fact two entangled pursuits – one focusing our critical lens with asking how power works and is maintained through bodies and one using another focus of the lens to ask how power works and maintains through knowledge production. These lenses work independently and together, ever-sharpening our ability to call out and challenge how power oppresses. Yet, even with these critical lenses overlapping in power and focus at our disposal, we so often lose sight of the oppression in our midst. 

There are moments, however, that make inequity almost impossible to ignore. The first year of the coronavirus pandemic was one of them. As many of us adapted to living all aspects of our lives out of our homes, higher education was forced to quickly learn and develop methods to make teaching, learning, and working more accessible—adopting techniques long advocated for by a movement for disability justice. 

As universities look to the future, many are touting fully in-person classes, a traditional living experience for students, and a general “return to normal” for students, faculty, and staff. Many fear that a return to normal will mean reverting back to a sense that higher education is only for the “normal,” the able-bodied, the “good”-bodied. Yet, these pandemic years have demonstrated, as universal access suggests, that everyone benefits from accessibility, from slowing down, and from a sense of mutual care. 

In the diversity, equity, and inclusion (DEI) realm of higher education, accessibility has suddenly seemed to become a requisite concept. A few years ago, having gender-inclusive restrooms at a national conference of higher education diversity professionals was considered a challenge to adopt. Now many institutions are renaming their offices and officers to read ODEIA—A for accessibility, where previously only DEI (diversity, equity, and inclusion) existed. There is more attention to flexibility with scheduling, work-life balance, and general grace. Yet, this attention does not equal transformation. 

Higher education institutions are made of people (to quote my mentor, Dr. Mary J. Wardell-Ghirarduzzi, a DEI visionary). People can change, will change, want to change. Institutions rarely change unless it benefits their bottom line. Yes, higher education will be more accessible to the extent that students do not look away during application season or withdraw from frustration. Yes, higher education will be accessible to the extent that staff can work from home and have flexible schedules. Yes, higher education will be accessible to the extent that faculty can continue to teach their traditional course load. But higher education will resist if it means employees collectively bargaining. It will resist if it means faculty having to unlearn pedagogies that maintain hierarchies of bodyminds. It will resist if it means that students learn that critiquing the university is part of their intellectual formation. 

I know this because I have seen evidence of this every day as an institutional equity professional in higher education. The resistance to change is built into the fabric of institutional existence. Yet, I also see, daily, how simple the ways of being that foment change can be. Institutions are made of people, so change has to start with the relationships among them. 

What the pandemic allowed us to do was to have space to think about the wellbeing of others. We had to quite literally think about how our breath impacted those around us. If we can do that, with heartful and thoughtful intention, then we can bring that intention into so many more aspects of our higher education existences. 

Disability justice and DEI  are both in the details. It starts with knowing people’s names and what their stories are. If we start there, we can grow to know what it is that gets in people’s way when they’re trying to work well, live well, learn well. I know from my work that people will not tell you what gets in their way unless they trust you, deeply. Is there a plan to build trust in our institutions? Our strategic plans should be grounded in strategies to build trust. 

Park Milbern did not talk directly about trust when she was with us in 2019. But she did talk about pace, and indirectly encouraged us to think about trust in this capacity, as others have done.¹⁵

What is pace if you do not trust that the people around you understand you, your needs, and your intentions? The pandemic has given us the place to assess our pace and how it relates to power. Who gets to set the pace, and why? How can we reset the pace so more people can join the march? If we do this—stop to check the pace and reset with those around us—we will have held onto a gift, a rare gift, that the pandemic has given us. 

Conclusion

Emily took this photo while driving through the middle of San Francisco, streets largely still deserted because of the shelter-in-place orders during the late summer of 2020. It was a car that had traveled in a car parade of those mourning and remembering Park Milbern following her death a few months before.  It was a moment of reflection, of relief, of remembering. Since that time, activists and community scholars have developed resources and syllabi of what Park Milbern taught and gave to us all, stitched together on social media through this hashtag, #StaceyTaughtUs. This hashtag generated an outpouring of memories, of shared love and grief, and concrete resources with which to apply the wisdom and intellectual contributions of Park Milbern.¹⁶ Seeing this reminder of what Park Milbern taught us on a car, moving down an almost empty street, seems an apt symbol of ourselves shared here, as our writing here is an opportunity to remember together—and to move back and forth across time and place as we remember and reflect about what the pandemic has given us.