Introduction
Jon Mooallem opens his 2023 New York Times Magazine article “What Happened to Us” by urging his audience to “notice your resistance to reading the next several thousand words.” He states that he will write about “the necessity of looking back at the pandemic with intelligence and care, while acknowledging that the pandemic is still with us” and says that society’s reluctance to acknowledge this continuity comes from a desire “to let ourselves off the hook from having to make sense of [COVID] or take seriously its continuing effects.” As he summarizes, “When we say the pandemic is over, we are actually seeking permission to act like it never happened.” His article delves into the Columbia University NYC Covid-19 Oral History, Narrative, and Memory Archive, which, as he describes, “bulges with revelations, anecdotes, anxieties, blind spots, big ideas and weird ideas.”1 Despite its rich archival texture, very few people want to engage with the archive, aside from the two sociologists who founded the project and authored research that draws on the interviews.2
This reticence would have seemed unfathomable in the early days of the pandemic. When Prime Minister Boris Johnson addressed the people of the United Kingdom about COVID-19 for the first time on March 23, 2020, he referred to it as “the biggest threat this country has faced for decades” and announced the mandatory closure of non-essential businesses, the suspension of public gatherings, and a stay-at-home order as infections, hospitalizations, and deaths surged.3 For approximately two years, COVID-19 became a defining part of life.
However, the desire to ignore, deny, and minimize COVID-19 has been present since those early days as well, from anti-lockdown protests in cities across the UK4 to the Great Barrington Declaration, an open letter advocating against COVID-19 precautions co-authored by an Oxford University professor.5 However, what originated as a fringe position has become the accepted societal norm. Today, governmental, institutional, and individual precautions have largely been dropped, leading to a perception that the pandemic has ended, enabling the hesitation and refusal that Mooallem describes. Additionally, in this shift of pandemic denial from marginal to mainstream, the voices of the most oppressed and most impacted by COVID-19 have been particularly undervalued, even though, as Leah Lakshmi Piepzna-Samarasinha writes, these communities “are geniuses at staying alive despite everything,” and their knowledge could have informed more effective and equitable responses to COVID-19.6
In this article, I aim to reverse these patterns of erasure by drawing on another oral history archive, the Queer Pandemic collection, to center queer disabled voices and analyze queer disabled lived experiences. I will first provide a state of the field of queer/crip pandemic writing, give an overview of my methodology, and detail the specific point in the pandemic that my analysis hinges on—the “return to normal,” the period in spring 2022 when national precautions were dropped in England. Then, drawing on Queer Pandemic oral histories with queer disabled and nondisabled people about COVID-19, I will argue that disabled people’s perspectives as disabled oracles shaped their experiences, particularly in interactions with the nondisabled world, at the turning point of the return to normal and beyond, becoming a throughline across the changing social landscape of the ongoing pandemic.
Literature Review
Given the relative recency of COVID-19 and the slow pace of academic publishing, there is limited scholarship available on how the pandemic has affected queer and/or disabled people, but this burgeoning subfield indicates exciting possibilities and important revelations. Many scholars mention these two communities briefly as relevant to pandemic experiences, while others incorporate similar concerns of queer and disability theory. For example, Cal Biruk draws on queer, crip, and critical race theories to understand the non-normative body as a threat to the social order during the pandemic7 and Alexia Arani explores queer and crip theory-informed mutual aid in the time of COVID.8
More scholarship is available on both populations in isolation. Research on queer people and COVID-19 has largely followed four main themes: COVID-19 disease outcomes in queer communities9; the role of the pandemic in heightening existing problems in queer communities, such as declining mental health,10 barriers to accessing HIV/AIDS care,11 intimate partner violence,12 and precarity of queer space13; queer romantic and sexual relationships during the pandemic14; and new possibilities created by COVID-19, particularly in relation to digital alternatives to traditional in-person queer space.15
There is a significantly larger pool of existing scholarship on disabled people and COVID-19, reflecting the medical angle on both. Scientific scholarship includes case studies16 and policy recommendations grounded in scientific findings.17 Other research has looked more generally at disabled people's experiences during the pandemic, largely finding patterns of increased ableist inequality18 and exclusion,19 as well as the negative impacts of these forces on disabled people’s mental health.20 However, disabled resistance, activism, and connection is also on the rise.21
My work is critically situated in the literature reviewed here. I analyze my primary sources through the lenses provided by queer/crip theory that involve the shared themes mentioned above and reference social science research about queer disabled people and lives during the pandemic. I braid together existing theoretical concepts with the disabled oracle, an idea originated in the pandemic context by disabled writer and activist Alice Wong. In a blog post titled “Message from the Future: Disabled Oracle Society,” Wong describes that “The Disabled Oracle Society began in 2020 in the midst of the coronavirus pandemic when sick and disabled people sounded the alarm about the importance of wearing masks, the value of accessibility, and the interdependence of all communities” even as institutions communicated that marginalized people were “considered disposable” and manifested “casual,” “unchecked” ableism, racism, and ageism.22 She argues that disabled people have acted as oracles throughout the pandemic, understanding COVID-19’s severity and potential longevity more accurately than nondisabled society, and that the nondisabled mainstream’s refusal to listen to disabled oracles has contributed to the ongoing and worsening nature of the pandemic. The oracle aligns with an ongoing concern with constructions of normalcy that has been “central to the disability rights movement and to disability studies,” in which a disability perspective allows for a level of critique that remains out of reach for nondisabled society.23 The disabled oracle sees through the illusion of the return to normal, continues to honor disabled knowledge, and refuses to accept the ableist norm.
Building on Wong’s conceptual work, I combine the disabled oracle concept with frameworks from crip theory and disability studies to demonstrate the way that the pandemic context and pandemic theories can open new, rich angles on existing frameworks, in combination with a unique data set that allows me to bring the voices of queer disabled people into my analysis in a unique way. As a result, this article can make a valuable contribution to disability, queer, and COVID-19 studies by showing how queer disabled people’s lived experiences, established concepts from queer/crip theory, and new concepts that emerged from pandemic theorizing intersect and work together.
It will also apply this scholarship and theoretical analysis to the geographically specific context of England. England was known for a slow and poor response to the pandemic, with “one of the worst rates of infection and case fatality in the developed world” exacerbated by a lack of investment in public health and healthcare systems, hesitation to commit to a long-term strategy, unclear communication, and politicization.24 Additionally, queer and particularly trans people’s position in England is increasingly precarious; politicians and parties across the political spectrum promote transphobic policy and rhetoric, and hate crimes against queer and trans people have risen dramatically in the last five years.25
Materials and Methods
The main primary sources for this article are interviews from the Queer Pandemic oral history project, a collaboration between several universities and cultural institutions: Kent State University; Goldsmiths, University of London; and Queer Britain, the national LGBTQ+ museum of the UK. The original intention of the project was to develop an archive that represented the experiences of queer people during the pandemic, as queer people are underrepresented in the histories of prior pandemics, other than HIV/AIDS.26 In the scope of the project, queerness is an important standalone identity marker, but as the narrators quoted here demonstrate, queer identity intersects with other identities, primarily disability but also race and class, to shape experiences of COVID-19. Via Zoom, the project collected the stories of LGBTQ+ people in the UK during the COVID-19 pandemic between fall 2020 and May 2023, when the World Health Organization declared that COVID-19 was no longer a global pandemic,27 with approval from Kent State University’s Institutional Review Board. As part of the informed consent process, narrators consented to have their full names used, which is reflected in the notes of this article.
I served as the research manager on the project from 2021 to its conclusion in 2023, conducting several interviews and transcribing many more. As a queer disabled person, I share several social identities with narrators and resonate with many of their pandemic experiences. I approached these interviews from the position that disabled queer people’s wisdom matters greatly, particularly in the pandemic context, in part informed by my own experiences learning from fellow disabled queer people in community and academia. Other identities I did not share—for instance, I was younger than most narrators. My positionality in sharing or differing in identities with narrators often shifted from interview to interview. For example, I am white and affiliated with a university, a position that I shared with some but not all narrators. I am also a United States citizen and conducted this research in part while living in the U.S. and in part while living in the U.K. on a student visa, a significant difference from the narrators and a position of both privilege and precarity. As a result, I navigated both insider and outsider positionality while I worked on the project and continually reckon with both as I write about these oral histories.
In this article, I examine and interpret oral histories collected by myself and other project volunteers using the standard Queer Pandemic interview guide, which asks four categories of questions: biographical information, life during the COVID-19 pandemic, experiences as a queer person during the pandemic, and the governmental response to COVID-19, with narrators who self-identified as disabled, chronically ill, or having a health condition that impacts their daily life and substantially reflected on this identity’s impact on their pandemic experience.28 I also include interviews with nondisabled narrators in order to provide a comparative analysis and demonstrate the significant impact that a disabled perspective has on pandemic experiences and understandings. Additionally, I analyze oral histories from a sub-project I initiated to increase the representation of disability in the interviews. I recruited narrators from disability organizations in the U.K. and interviewed these narrators with a disability-focused interview guide that has an additional two sections of questions: experiences as a disabled person during the pandemic and the overlap of queer and disabled identities. I received ethical approval for this sub-project from the Institutional Review Board at Birkbeck, University of London, where I was an M.A. student at the time of this research.
Queer Pandemic oral histories are limited as a data set. While the narrators represent a wide range of ages and queer identities, most are white and British, live in large metropolitan areas (particularly London), and belong to the middle class. Efforts were made to include a diverse range of narrators by connecting with local queer groups across the UK’s four constituent nations, including groups outside of cities, virtual groups with wide geographic spread, and groups dedicated to intersectional identities. The project was also engaged in efforts to engage additional narrators of color when the project stopped collecting interviews in May 2023 but is still majority white. Due to limited resources, the project could not provide compensation for narrators, which can substantially increase inclusion of lower-income narrators.29 While I have selected narrators to quote with diversity in mind, this article is still limited by the overall homogeneity of the narrator pool.
I used coding, grounded theory, and content analysis, assisted by NVivo, “to help identify insights and themes” from the oral history dataset.30 Through this process, the impact of disability on pandemic experiences emerged as a theme from disabled narrators. I then coded these excerpts a second time to reflect more specific themes using frameworks from queer/crip theory, including cripistemologies, access friction, the “return to normal,” the disabled oracle, and the crip killjoy/queer complainer—all of which hold space for different kinds of disability and the intersection of disability with other identities. This allows me to place the experiences of people with many different disabilities in conversation with the disabled oracle. In this article, I have chosen to focus on a limited number of narrators who addressed these themes most saliently in their interviews so that I can engage more thoroughly with each narrator’s rich testimony. This means that I have not been able to include the testimonies of every narrator who meets the analysis criteria nor analyze the intersectionality of disabled queer identity with other identities in depth, due to the limits of time and space in this article. As a result, this article should not be interpreted as a generalization about how all queer disabled people in the UK experienced COVID-19, but instead an explication of several specific experiences and a potential framework to inform further research on disability during the pandemic, as well as action to increase equity for disabled people during an ongoing pandemic.
The “Return to Normal” and the Disabled Oracle
My analysis focuses on the “return to normal” initiated in February 2022 in England, when the pandemic dropped its final national COVID-19 precautions.31 This was a watershed in the pandemic’s political and social history. Disability studies scholars Keith Rosenthal and Ari Parra declare that “society itself had become disabled” during the first year of the COVID-19 pandemic.32 This description draws on the social model of disability to describe that the decisions of institutions and preexisting conventions meant that most activities outside the home became inaccessible or required a great deal of preparation, and that the body, health, and access became greater concerns for nondisabled people. As such, they outline that the turning point of the return to normal presented two possibilities: “our world becoming either further estranged, individualized, and sundered” if disabled knowledge and ways of living are forgotten, “or interdependent, solidary, and mutualistic” if they remain honored and implemented.33 Piepzna-Samarasinha adds, “if most of the world is disabled, it is an opportunity to claim our power and build an accessible, just world.”34
However, ultimately, this moment resulted in a shift away from an active emergency state, illustrated by then PM Johnson’s description of “the biggest threat this country has faced for decades,” to a “living with the virus” approach.35 This phrase, relying on nondisabled crisis logic, means that the pandemic emergency state must end and norms must be re-established in their original, often violent forms.36 This mode of crisis, as such, maintained an ableist status quo instead of allowing to guide society to new possibilities and equity with pandemic precautions remaining in place.
As Theodora Danylevich and Alyson Patsavas point out, the precautions and state of emergency associated with COVID-19 was always considered transient by nondisabled society because the pandemic was conceptualized under nondisabled understandings of emergency, which assumed that the pandemic would be a temporary state and as such, the widespread adoption of disabled frameworks would be temporary as well.37 Similarly, Johanna Hedva says in “Sick Woman Theory,” “What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.”38 This was exacerbated further in contexts of heteronormativity, white supremacy, and neoliberal capitalism. Queer theory and culture also acknowledges that the idea of crisis as “the rational assertion of a time out of time” is reductive and other models, such as crisis as a “permanent state of exception,” are more useful as queer models for understanding time and emergency.39 Similarly, Fatin Abbas identifies time norms practiced by Black people, people of color, and currently or formerly colonized people as resistant to the “invisible norm” of “white time,” which is “linear, efficient, punctual, productive,” by embracing slowness, unproductivity, and “space for solidarity and community.”40
However, because the pandemic did not lead to “exposing and remaking our understandings of crisis” on a societal scale informed by the theories and practices of marginalized communities, Danylevich and Patsavas argue that the “devaluation of crip knowledge” was “almost inevitable.”41 E. Krebs adds that nondisabled people resisted sick spacetime and desired a return to normal so fervently because sick spacetime “forced people to experience a small taste of what it is like to live with chronic illness,” which invoked a level of terror that prompted the quick abandonment of anything influenced by disability.42 Survey data supports these theories, showing that the end to the government response led other institutions, organizations, and individuals to end their own precautions,43 resulted in a decline in public support for potential future government action related to COVID-19,44 and led to an increase in the number of people who believed that pandemic conditions were improving, regardless of the current infection, hospitalization, and death data.45
The return to normal also arose as a major turning point in narrators’ personal lives. Overall, disabled narrators fell outside of the “return to normal,” continuing with crip ways of being and voicing objections to the return to normal even as the world around them moved on from COVID. I argue that this is because of their perspectives as disabled oracles, which enabled them to uniquely understand the longevity of the pandemic and how to best respond.
The Queer Pandemic interviews demonstrate the accuracy of Wong’s description of oracles as aligned with an ongoing critique of “normalcy” and better understanding of the realities of COVID-19. Thirty-six Queer Pandemic narrators who lived in England had been asked when they thought the pandemic would end in their interviews; seventeen of those narrators stated that they did have an illness, health condition, or disability that affects their daily life, and nineteen responded that they did not. Among the disabled narrators, nine stated that they believed the pandemic would never end.46 An additional two disabled narrators predicted that the pandemic would end between one and three years after their interview date,47 and two responded more generically, saying that they thought the pandemic would last a long time, but not naming a specific time frame for its end.48 Two simply said that they didn’t know.49 Finally, three pointed out that the end to the pandemic would vary geographically, linking their responses to a discussion of vaccine and public health inequity.50
In contrast, only three nondisabled narrators stated that they thought the pandemic would never end,51 and three named a timeframe of over one year.52 Interestingly, of these six narrators, two are high risk for COVID-19 because they are over the age of sixty-five,53 which could account for their closer alignment with disabled people's answers. None of the nondisabled people discussed their predictions without naming a specific timeframe, and only one said that he did not know when the pandemic would end; he is also at high risk due to age.54 Additionally, only one of the nondisabled narrators raised the issue of global vaccine and public health inequity. The remaining twelve nondisabled narrators stated that they believed the pandemic was already over55 or predicted that it would end within six months to a year.56 For all twelve of these narrators, the end dates they predicted have passed, and the pandemic has outlasted their predictions.
Many disabled narrators’ predictions, too, have proven inaccurate as additional time has passed. At the time of writing, we are now three years removed from many of their interviews and even some of the longest estimates given have proven inaccurate, though less so than the shorter estimates of nondisabled people. For others, it is impossible to determine the accuracy of their predictions that COVID would never end. However, their answers demonstrate that these narrators are disabled oracles as described by Wong. People who are high-risk for COVID-19, either due to a disability, chronic illness, or age, were more likely to voice a more accurate opinion about when the pandemic would end than those who are not. They were also more likely to raise potential solutions or actions the government could take. However, their concerns represented the minority opinion in a nondisabled mainstream society and remain largely unaddressed.
For example, Leon, a thirty-five-year-old white British gay trans man living in Surrey who is disabled, acknowledged that a version of normalcy could emerge in wealthy countries like the UK but also specified that, “Variants are going to crop up, we’re going to continue to see waves, I think, or spikes and surges and services being overwhelmed…to me, the end of a pandemic would mean equal access to what is needed. It’s not going to arrive because the global economic West are not giving that access.”57 Leon’s words summarize the nuances that are left out of nondisabled responses: the recognition of variants as a threat and realization that global vaccination would be necessary to truly end the pandemic.
Race and ethnicity are also important factors in this discussion. Kush, a forty-four-year-old gay and disabled Indian man living in London, responded that while the UK could achieve normalcy within a year, “for people who enjoy traveling or have relatives in far-flung—in other parts of the world, I think it's going to take a couple of years for things to get back to any sense of real normality.”58 This was important to Kush as someone who has relatives living internationally and realized how different their experiences were to his own as someone in the UK. Similarly, Syeda, a forty-four-year-old British Pakistani queer woman, was the only nondisabled person to raise these issues in her answer to the question about the end of the pandemic, likely influenced by her family living internationally. She described the death of her uncle outside of the UK, emphasizing the two different cultural contexts: “it was somewhere where there was kind of COVID skepticism, I suppose, you know, people refusing to wear masks as well…people were talking about it as though COVID was a thing that happened to people in Western countries because of the way that people behaved.”59 She surmised that this could prolong the pandemic in the country where her relatives live.
This is in strong contrast to most nondisabled people’s answers. As Rice et al. describe, non-queer, non-crip time relies on “dominant temporal narrative arcs of perfectibility and progress” which is reflected in how nondisabled people perceive the future of COVID-19.60 They believe that the narrative arc of the pandemic will progress on an upward trajectory and toward resolution and predict that it will reach a conclusion fairly quickly. For example, Emma, a twenty-one-year-old white British bisexual nonbinary person living in London who is not disabled, stated that, “Well, now that we’ve got the vaccine, I am hopeful that it will end soonish, within a year…I think the vaccine is supposed to be fully rolled out by April or May [2021].”61 Emma believed that the introduction of the vaccine would lead to the relatively quick resolution of the pandemic. It is these kinds of assumptions, multiplied on a global scale and held by those in power, that have led to the current “post-pandemic” scenario in which the pandemic is understood to be over despite the evidence to the contrary.62
Understandings like Emma’s demonstrate how a disabled oracle perspective on temporality and chronicity shapes predictions about the pandemic. The disabled oracle’s perspective on the “return to normal,” which uncovers the illogic in an end to pandemic precautions without ongoing, structural change to public health and increased care for marginalized communities, shaped queer disabled people’s interactions with the nondisabled world across the transition “back to normal.” As the “return to normal” occurred, disabled people watched their knowledge once again lose social value but continued to assert their importance in an ableist world, and once “normalcy” had been reinstated, they asserted their objections as resistance against the violence of these norms.
Oracle Cripistemologies and Disabled Lives
Merri Lisa Johnson and Robert McRuer coined the term “cripistemologies” in 2014 to describe crip ways of knowing borne from experiences with one’s disabled body/mind that hold space for the fluidity and multiplicity of disabled life.63 The term is also informed by queerness; Johnson and McRuer “route cripistemology through a reconsideration of Eve Sedgwick’s canonical work Epistemology of the Closet, which describes the “crisis of homo/heterosexual definition” as “chronic, now endemic,” arguing against binarism in a language informed by crip crisis. A recent special issue of the Journal of Literary and Cultural Disability Studies celebrated the ten-year anniversary of the term and introduced several applications to the COVID-19 pandemic that also highlight the multifaceted nature of cripistemologies. For example, Clare Mullaney argues that her cripistemology of focus, called “demented time,” “makes space for the dead—six and a half million deaths (and counting) worldwide—to transform the living,” and Cynthia Barounis’s cripistemology of camp “embraces and nurtures that which the neoliberal state considers waste,” including the health of frontline workers during COVID. Similarly, writer and activist Leah Lakshmi Piepzna-Samarasinha encapsulated in an interview, “If you wore a mask or used an air purifier; if you figured out how to execute a care plan for yourself or a loved one; if you fought for vaccine equity or against medical violence or care rationing during COVID; if you are imagining a present and future without cops and prisons, where people can create safety and get the care they need without being locked up—you are organizing and surviving because of disability justice.”64 As these scholars and activists show, cripistemologies during COVID can range from access tools like masks and air purifiers to reconceptualizations of norms around value and death. In the words of Danylevich and Patsavas, cripistemologies form a multifaceted tapestry—“heterogeneously woven threads of life and culture that serve as recipes for how to cope, relate, navigate, and exist…each piece instantiates a synthesis of access and archive.”65
In the first year of the pandemic, mainstream society adopted many practices and perspectives derived from disabled people’s experiences, and this changed the lives of many disabled people. As “society itself had become disabled” by COVID, wisdom and practices developed by disabled people who were used to navigating illness and trauma gained new value in the eyes of nondisabled people who were facing these conditions for the first time. However, these were soon abandoned under nondisabled conceptualizations of crisis. I argue that these interviews show both that there was new value assigned to the ways of being that disabled people envision and enact, which were then stripped of their value as the pandemic continued, though disabled people continued to assert them.
Ju, a 60-year-old white British queer gender-nonconforming lesbian woman living in London, is a longtime activist, artist, and writer working at the intersection of her queer and disabled identities. In her interview, she demonstrated the trajectory of cripistemologies from valued to devalued across the return to normal. Before the pandemic, they had been building a crip community for years, but their work and ways of being were ignored by “challenged nondisabled people” who insisted that they could not connect with Ju on their terms.66 However, once COVID-19 precautions forced those people to rethink their own ways of being, they were suddenly interested in the worlds that Ju and other disabled people had built and sustained. “Nondisabled people have suddenly discovered that they can, they can do things just like the rest of us,” she observed of this change.67
While this raised new possibilities for Ju’s life, it was also complex. In sarcastically commenting about “challenged nondisabled people,” they implied the ambivalences experienced by many marginalized groups during the pandemic whose knowledge and practices received sudden attention. In her article on mutual aid during COVID, Arani describes the “highly ambivalent experiences” of many disabled and queer people of color associated with the mainstreaming of mutual aid work during the pandemic.68 While mainstreaming could lead to greater recognition and resources, which could increase the impact and scope of mutual aid projects, “the needs, experiences, and expertise of sick and disabled TQPoC are likely to be invisibilized.”69 Ju demonstrates this tension between gratitude that she no longer had to endure “access shit,” joy regarding new connections, and frustration that her access needs were only met when nondisabled people also needed accommodations.70
Ju also faced the re-marginalization of cripistemologies after the “return to normal” was initiated, describing her frustration at the government’s ignorance of disabled people’s wisdom as the government dropped precautions in England and “murdered thousands of people”: “that needn’t have happened. We are the experts…I hold so many stories in my head, you know, the experiences of a lot of people who are no longer with us included,” but concluded that the pressures of the “return to normal” meant that her accumulated cripistemologies, informed by her lived experiences and the wisdom of disabled ancestors, were once again ignored.71 They and their community were once again on their own to protect themselves.
Holly, a 23-year-old Black British queer and nonbinary person living in Rugby, described a similar experience. During the pandemic, Holly felt that mental health had “become a lot more accepted” than before because “more and more people actually personally dealt with it. There’s been a lot more conversations, open doors, open communities actually formed,” transforming mental illness from an individual to collective experience in a way that aligned more with what Holly had observed among interdependent disabled communities than nondisabled ways of living that encouraged individualism and overcoming mental health issues.72 They described that this was brought into being by the expansion of disabled ways of being to nondisabled people, saying, “what the pandemic did is it bridged that sort of gap. People were able to see how it was to be disabled in that way” by staying at home.73
However, Holly also observed that mental health services became “stretched beyond belief” by the increase in people seeking treatment during the pandemic and that virtual alternatives were not always effective.74 As they described, “a lot of these organizations have moved their psychiatrists, moved their therapists, moved their support workers online…because it’s cheaper that way.”75 Holly personally observed that telehealth is a barrier to treatment because “you can’t determine someone’s overall well-being over the phone,” but described that this was not taken into account by providers.76 While Holly no longer personally faces the access friction they felt during the precautions stage surrounding health care, they realized that many other disabled people still did, and criticized that pattern. Studies on telehealth also reiterate concerns about its equity, demonstrating that telehealth is less effective for those with higher anxiety rates about healthcare and lower health literacy, both of which align with lower socioeconomic status.77
Like Ju, Holly reiterated the government’s responsibility in exacerbating the problem by cutting resources to mental health services and noted, “I don’t think they’ll ever reinvest in them.”78 Again, similarly, they noted the steps taken within disabled communities to enact their own cripistemologies and care for one another as cripistemologies on a larger scale faced abandonment. They described, “we have taken these sort of things into our own hands. People are volunteering to work at call centres…and trying to be there for other people,” but “it's now creating this cycle of exhaustion”—disabled people are providing care to others, burning out, and then needing additional care themselves.79
Stewart, a 34-year-old white British and Irish nonbinary person living in London, also described a cripistemological outlook in their interview, in a way that overlaps with the queer view of temporality and crisis. They described worrying about future variants of COVID-19 that could re-introduce high levels of risk after the return to normal and explained that “my view is, I’ll do as many lockdowns as long as it takes, as long as it saves lives.”80 They were willing to take precautions as long as needed, in direct opposition to the nondisabled value placed on the temporary nature of crisis states and precautions. Stewart then connected that viewpoint directly to their lived experience as a disabled person who “benefits from these sort of social actions” and is in community with others who benefit as well.81 They framed their willingness to continue taking COVID seriously as a direct result of their lived experience as disabled and their desire for crip-informed ways of being.
Stewart also mentioned their dedication to mutual aid during future variants. Just before the pandemic, the progression of Stewart’s disability, a form of blood cancer, meant that they could no longer work or afford rent, so they moved into a room in a council hostel. About a year before their interview, they moved to their own council home, and reflected on how that change would increase their own safety as the pandemic progressed, as well as the ability to assist their disabled community: “I’m fortunate enough to be in a better position than I was, so now if I think about moving forwards, it’s making sure then that the people that I have the possibility to support and influence, that they end up in better positions, and they’re more well-resourced.”82 Their commitment to considering the future of COVID also invoked their commitment to community care.
Finally, similarly to Ju and Holly, Stewart detailed frustration with the government’s response to the pandemic, which exacerbated his fears for the future. They said, “I worry sometimes that the UK government takes a bit of a libertarian point of view about [the idea that] ‘people will use their common sense to protect each other and we shouldn’t tell them what to do,’ and I don’t trust the general public potentially as much as they do.”83 While the government put significant trust in the public, Stewart’s outlook was informed by past observations that the public had not taken COVID precautions when government recommendations were not in place.
Queer Disabled Oracles Against Normalcy
These interviews demonstrate that queer disabled people, as oracles, understood the goal of a “return to normal” as unrealistic and undesirable due to its abandonment of cripistemologies and disabled people. While Ju and Holly turned within their own disabled communities to combat this, they and other disabled people also voiced their objections to the violence of normalcy in protest. Drawing on a range of theories about queer/crip disagreement, I argue that their disagreement is a productive and disruptive crip practice that allowed them to resist the oppression and harm perpetuated by the return to normal. Johnson and McRuer write about the concept of the crip killjoy, based on Sara Ahmed, whose figure of the feminist killjoy is “a site of productive misalignment with cultural institutions to be (or act) happy in oppressive circumstances.”84 Ahmed writes that “being a killjoy can be a knowledge project, a world-making project” that enables the exposition of and assertion against sexism. Similarly, the crip killjoy “refuses to play along” “if a cruelly optimistic culture insists that we fake it till we make it,” resisting ableist pressure to remain silent and perform compulsory able-bodiedness. Ahmed also writes of “complaint as queer method,” framing complaints as coming out stories and the act of complaining as a form of queer activism: “the doors slam. So, we knock on the door. We knock on the door not to demand entry but to create a disturbance.”85 Similar themes are explored by the co-editors of Crip Genealogies, Mel Y. Chen, Alison Kafer, Eunjung Kim, and Julie Avril Minich. They discuss the possibilities of crankiness as a crip method and as “yearning for more,” exposing the inadequacy with which disability is typically addressed.86 In Crip Negativity, J. Logan Smilges also imagines negativity as possibility, asserting that “it is only by feeling out bad crip feelings collectively, as well as cripply, that we can begin to demand all that we need to thrive.”87
These forms of disruption and disagreement are salient in the Queer Pandemic interviews. For example, in Ju’s interview, she outlines a recent incident with a surveyor who refused to wear a mask and gloves in their home despite the high-risk status of Ju and their partner. Ju described that their personal assistant explained the risk but “nobody cares” and “there’s this absolute bewilderment that people are still getting infected” after the vaccine rollout and the end to national precautions.88 However, as disabled oracles, Ju and her partner knew that COVID still remained a threat. Her words demonstrate the consequences of a non-queer, non-crip perspective on the pandemic’s trajectory and the implications of a killjoy/complainer role. People who are not disabled oracles with an understanding of the pandemic’s flexible, ongoing, queer/crip timeline believe that COVID-19 has ended. They are attached to a narrative of progress and are also determined to ignore complainers and killjoys to support their belief that the pandemic is over. This perspective actively puts disabled people’s lives at risk when it results in reactions like that of the surveyor, who refused to enact Ju’s precautions to protect them and their partner in their home.
Acting as a crip killjoy or queer complainer introduces new, additional risk to an already precarious situation. Krebs characterizes the return to normal as “violence” for a reason. Reminders of the reality of the pandemic are unpleasant for nondisabled people, who may react poorly beyond a simple refusal to take safety precautions. A joint study between the Institute of Psychiatry, Psychology, and Neuroscience and the faculty of the social science and public policy departments at King’s College London demonstrated that 56% of people surveyed in the UK “reported having had arguments, feeling angry, or fallen out with others because of COVID-19.”89 Ju mentioned that disabled people are already at high risk if they are in care homes or receive care from personal assistants; if they are marginalized in any way, they may face racist, sexist, queerphobic, or ableist microaggressions or violence.90 Asking care workers to respect pandemic precautions could result in an increase in such instances. However, Ju saw it as important to voice the ongoing risk of COVID anyway, saying, “you go, ‘no, lovey, what’s happened is we now have a eugenics policy. It’s not that COVID’s over. We’ve just got eugenics.” She knew, from interactions like the one with the surveyor, that her words may not result in any change in precautions, but called out the ongoing eugenics policy in the UK anyway. The disturbance to the norm, exposure of societal ableism, and assertion that disabled people deserve better was the goal.
Holly similarly describes anger and frustration at the “uncaring” responses of nondisabled people to disabled people’s needs for precautions, especially the eugenic logic, also identified by Ju, that the deaths of disabled people did not matter because they had pre-existing conditions.91 Holly explains, “Just because they had a pre-existing disability did not mean they were meant to die…there was such frustration, you know, from my disability community and just people around me, but other people weren’t getting it” and instead thought that “disabled people were bringing the nation down” by requiring nondisabled people to shift their daily lives.92 Holly’s anger and frustration resulted from understanding possibilities for a response to the pandemic that prioritized care for the most vulnerable and the determination of the nondisabled majority to ignore those possibilities. Their vision also demonstrates a broad understanding for collective care that not only provides for people who are currently at the most risk, but also acknowledges the need for broader protection “now that long COVID is affecting anyone” and nondisabled people “are now getting long COVID and becoming part of the disabled community.”93 Her observation harkens to Sami Schalk’s observation that “it won’t be long before basically a majority of adults in the US are disabled by long COVID and/or lack of access to healthcare because of COVID destroying our systems & the people who run it,” and resulting invocation to “start listening to disabled people about how to make more accessible worlds.”94
Holly also identified that sharing that anger and frustration with their loved ones who understood the state of the pandemic was an important source of support for them. They describe, “my immediate family, friends, relatives, they all sympathize and understand the plight of my disability community, so they are angry for me.”95 Their relationships with their loved ones were strengthened by the fact that they shared in anger about societal ableism, and they saw that collective anger as an important part of their loved ones’ care for them. Their experiences also align with Smilges’s assertion that collective engagement with negative feelings reinforces disabled people’s ability to demand a better world and increased care. Additionally, their ability to do so came from their practices as a killjoy and complainer. Opening up space for those conversations and their loved ones’ understanding of the needs of disabled people resulted from Holly’s dedication to talking about disability and ableism. For Holly, the killjoy and complainer role enabled collective negativity with worldmaking potential.
Stewart also discusses how disabled negativity intersects with social life in important ways, especially as a queer person. They were able to remain isolated and unexposed to COVID-19 while there were national precautions in place, and was able to seek out alternative socialization through the many online spaces that began hosting online events during the first two years of the pandemic, including Outside Project, Queer House Party, and Club Quarantine.96 However, once those precautions were lifted and those alternatives shrunk or disappeared entirely, Stewart struggled to balance their desire to socialize with managing risk. This was particularly important to Stewart as a queer person. Their social circles were returning to in-person spaces with high exposure and poor ventilation, like bars and clubs, and they found public “straight environments,” like mainstream cafes, did not meet their need for fulfilling in-person spaces.97 As they described, “I want to be in queer spaces” but ‘“I see my friends going out and partying and all of that stuff and—and I still have that mixed message of, like, ‘Well, what is the risk for me?’”98 For Stewart, being part of in-person queer communities was important both to queer identity and to belonging in public. Again, those who lacked the perspective of the disabled oracle reverted to pre-pandemic behavior after national precautions ended, complicating the lives of their disabled loved ones and changing the dynamics of their relationships.
As a result, Stewart shared that a defining part of their experience during the lifting of precautions stage was “asserting your boundaries” around what socialization they could and could not engage with and negotiating how to maintain relationships without risking their health or alienating their loved ones.99 Stewart did not share whether their social group was receptive to their assertions, but they did note that while such negotiations were “a lot to try and get to grips with,” they felt more prepared to do so because “those conversations always kind of happen because of cancer.”100 This aligns with Ahmed’s description of killjoy as a knowledge project and the connections Johnson and McRuer make between the killjoy and cripistemologies. Stewart’s previous experiences as a disabled killjoy and their cripistemologies enabled them to resist the return to normal during COVID. Stewart’s experience also highlights the use of negativity to propose possibilities for a better world. In rejecting a return to normal that placed their health at risk, Stewart made known their desire for a world that both valued their disability, respected their risk level, and provided space for community and asserted their confidence that such a world was possible.
Discussion
I contend that this article makes two important interventions in COVID-19, queer, and disability literature. First, it exemplifies the value of oral histories in exploring the impacts of the pandemic, which provides an additional level of detail for the researcher and was also perceived as important by the narrators themselves, particularly as minoritized subjects. For example, Stewart reflected, “They have such a richness to them, but also, you know, historically, people who write about minoritized people are not the people themselves, and those…tend to, you know, get absorbed by other people or lost. So I think stuff like this is super important.”101 Similarly, Ju stated, “This is such a valuable thing to be doing. At least we know if we're dead that our voices are still being recorded.”102
Second, it reveals how existing concepts from queer and crip theory, like cripistemologies and forms of negativity, are changed and evolve when in conversation with pandemic-specific theories like the disabled oracle. As a result, this research can provide a valuable framework for future work on COVID-19 and other pandemics. Additionally, while my data set focuses on queer people in the United Kingdom, these findings and recommendations may be relevant beyond the UK. In the United States and many other Western countries, the pandemic response followed a similar general trajectory, with some variation between states: period(s) of lockdown, followed by reopening plans, and then a return to normal. While more research is needed on local contexts, these parallels show significant potential outside of the geographic specificity of this study and similar projects could be undertaken in countries such as the US.
These findings have significant implications beyond academic work: they are also significant to advocacy. Oral history testimony can foster collective resistance, portray nuance, and counter reductive narratives often advanced in other representations of marginalized groups by creating an archive of experiences and forming networks of narrators that could be leveraged for activism.103 The Queer Pandemic oral histories include complex positive, negative, and ambivalent experiences of queer narrators during COVID-19, and the project has provided many conditions that could facilitate activism, including hosting events that allow narrators to connect and working toward a publicly available archive of the oral history interviews. More could be done toward activist ends for the project, and it must be part of a broader community response to COVID, but it can be an important contributor to the fight against ableism and queerphobia and to the movement toward disability justice and queer liberation in the context of COVID-19, as well as potential future pandemics.
Queer Pandemic as a series of histories can also play an important role in the relationship between public history and COVID-19. As a project that incorporates queer disabled voices, it can continue valuing those voices by not only including them in the archive but also planning public history events that are accessible to them. Additionally, as a project that documents the pandemic in detail, associated exhibits and events can promote narratives about COVID that acknowledge the lived experiences and realities of all participants and are not reductive or denialist.
Conclusion
In this article, I have traced the existing historiography of the COVID-19 pandemic and explored my methodology drawing on interviews from the Queer Pandemic oral history project. I have then situated my work temporally around the return to normal, the period of time beginning in spring 2022 when precautions were dropped and pre-pandemic ways of life encouraged or mandated by existing power structures. Combining Wong’s figure of the disabled oracle, who sees through the illusion of the return to normal, with established queer/crip theory, I demonstrate how oracle-hood defined the ways that disabled people interacted with nondisabled people and the nondisabled world. First, I have shown how disabled oracles maintained their cripistemologies, prioritizing the value of their disabled ways of being and crip-centric worlds, even as the value assigned to those cripistemologies shifted. Next, I have illustrated how disabled people used various forms of negativity, from killjoy and complaint to crankiness and anger, to object to and resist the ableist normal to which society returned. Finally, I have demonstrated how acknowledging the experiences of queer disabled people can serve as an important driver of anti-ableist public scholarship, activism, and advocacy.
The process of documenting and recognizing queer disabled oracle histories of COVID-19 is not easy by any means. Remembering COVID-19 by recounting it in an oral history interview, seeing a public history project about it, or reading an article that describes it is an admittedly painful experience, and attempts may be met with resistance. However, we are doing disability communities and the broader world a disservice by refusing to understand and respond to what has happened and what is still happening. As Piepzna-Samarasinha writes in the conclusion to The Future is Disabled, “We can choose to remember: our dead, our losses, and what they taught us, but also the vibrant spaces of disabled creativity and imagination we have made during the pandemic, that we have been building all our lives.”104