Perspectives in Biology and Medicine Vol. 64, No. 3

PERSPECTIVES IN BIOLOGY AND MEDICINE Summer 2021 Special Issue on the COVID-19 Pandemic

PERSPECTIVES IN BIOLOGY AND MEDICINE Editor Martha Montello Boston, MA Deputy Editor Franklin G. Miller Chevy Chase, MD Associate Editor Kenneth M. Weiss University Park, PA Managing Editor Solveig C. Robinson Tacoma, WA Neal Baer Los Angeles, CA Keith Barrington Montreal, Canada Catherine Belling Chicago, IL Rebecca Weintraub Brendel Boston, MA Daniel Brudney Chicago, IL Tod S. Chambers Chicago, IL Larry R. Churchill Nashville, TN A. Mark Clarfied Beer-sheva, Israel Farr Curlin Durham, NC Olaf Dammann Boston, MA Véronique Fournier Paris, France Arthur W. Frank Calgary, Canada Paul R. Helft Indianapolis, IN D. Micah Hester Little Rock, AR Anne Hudson Jones Galveston, TX David Jones Boston, MA Annemarie Jutel Wellington, New Zealand Jonathan Kimmelman Montreal, Canada Susan E. Lederer Madison, WI Christine Mitchell Boston, MA Jamie Nelson Lansing, MI Maria Serenella Pignotti Florence, Italy Scott Podalsky Boston, MA Lainie Friedman Ross Chicago, IL Johanna F. Shapiro Irvine, CA John A. Spertus Kansas City, MO Jeremy Sugarman Baltimore, MD Daniel P. Sulmasy Washington, DC Effy Vayena Zurich, Switzerland Eduard Verhagen Groningen, Netherlands Delese Wear Rootstown, OH Editorial Board Critical Assessments Editor Larry Churchill Nashville, TN Editors Emeriti Robert L. Perlman Chicago, IL Alan N. Schechter Bethesda, MD Editorial Intern Ashton Huppert Tacoma, WA Advisory Board Allan M. Brandt Boston, MA Edward M. Hundert Boston, MA Mark Siegler Chicago, IL Robert D. Truog Boston, MA

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Perspectives in Biology and Medicine summer 2021 • volume 64, number 3 Special Issue on the COVID-19 Pandemic Edited by Cherie Lacey and Annemarie Jutel Editors’ Introduction: More Than a Virus 295 Cherie Lacey and Annemarie Jutel The Trials of Solidarity: A Defence 302 Rubén A. Gaztambide-Fernández Cells in Hiding 315 Rebecca Gray Ontological Uncertainty and Ontological Threat: COVID-19 and the UK 316 Michael P. Kelly In Case the Sun Disappears 338 Julia Schneider “In This Together”: Diagnosis and the Imaginary Nation 339 Annemarie Jutel The Unexpected Perks of Flatting During Covid-19 352 Ruby Solomon Autopsy of the Living: Elderhood, Race, and Biocitizenship in the Time of Coronavirus 353 Jennifer Lum You Must Change Your Life: A Journey Toward Love and Kindness 370 Kathleen M. Kuehn NZ COVID Diary 387 Annemarie Jutel Intimacy in Isolation: Podcasting, Affect, and the Pandemic 388 Molly Robson

Victors,Victims, and Vectors 408 Rebecca E. Olson, Adil M. Khan, Dylan Flaws, Deborah L. Harris, Hasan Shohag, May Villanueva, and Marc Ziegenfuss Unpacking 420 Michael McLane Uses of History During the First Nine Months of COVID 421 Merle Eisenberg

Press 295 Editors’ Introduction more than

The editors would like to thank the anonymous reviewers for their engagement with the essays pub lished in this collection; Professors Damien Wilkins and Harry Ricketts for judging the entries in the 55-word story competition, “Living Through the 2020 Pandemic”; and all those who submitted en tries for the competition, for their pithy insights into “the year like no other.” The editors would also like to express their gratitude to the authors who contributed their essays to this Special Issue. Biology Medicine volume 64, number 3 (summer 2021): 295–301. by Johns Hopkins University a virus Cherie Lacey and Annemarie Jutel

,

Perspectives in

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© 2021

At the same time, in the unfamiliar context of isolation, we connected with a colleague from Edinburgh, Michael Kelly—someone Annemarie knew from sab batical trips and conferences, but with whom she had never worked. Enquiring first about his health and circumstances, the two started chatting from afar. Che rie joined in, and instead of fretting about the difficulty of undertaking research activities during lockdown, together we ended up writing a paper comparing the metaphors implemented to refer to the pandemic in our various media settings

When we first started thinking about this Special Issue in our home coun try of New Zealand, we had little sense of what the future might hold. Emerging from a very strict lockdown—where one of us found herself in an isolated rural community, unable to return home, and the other was confined to a small suburban space with a dog, two children under the age of five, and a husband, and both of us with doubts as to what our jobs would look like when we were “released”—our minds were strictly focused on the pandemic and its immediate impact on our day-to-day lives.

Of all the wonderful essays that have been written during this period, Zadie Smith’s “Something to Do,” from her slim collection of six pandemic essays, In timations (2020), is a favorite In “Something to Do,” Smith reflects on the expe rience of trying to work in a household in which her husband is also a writer and with a four-year-old child to look after in lockdown. In what is by far the best simile we have encountered in pandemic writing, Smith reflects on what might best be described as the collective madness that drove those of us who are non essential workers to keep trying to work and write, even as the world fell apart around us: “What strikes me at once is how conflicted we feel about this new liberty and/or captivity. On the one hand, like pugs who have been lifted out of a body of water, our little legs keep pumping on, as they did when we were hurry ing off to our workplaces. Do we know how to stop?” (22) Smith’s essay takes us into her domestic space and describes the pandemic from a perspective which can only be her own. Despite the fact that Smith and her husband Nick Laird happen to be two of the most respected writers on the planet in our current moment, somehow Smith’s experience also feels very much like ours. Like Smith, we were also compelled keep writing and working, pug-out-of-water-like, during the lockdown period. Perhaps the drive to keep working has something to do with an attempt to hold onto some kind of “ontological security” (see Mike Kelly’s essay in this Special Issue)—which is to say, to maintain some stability in our sense of self and who we are in this world. It is also, we believe, a way to start to make meaning from our personal and collective experiences of the pandemic.

Cherie Lacey and Annemarie Jutel 296 Perspectives in Biology and Medicine (Lacey, Kelly, and Jutel 2020). We went on to author other papers together, and to establish a new research relationship.

In August 2020, after submitting this first paper, and well before any country was out of the woods with regards to the pandemic (New Zealand included), the idea that we might consider COVID-19 as a shared experience gave us pause and pushed us to develop this special issue. We wanted to explore the dialectic of commonality in the experience of the pandemic. In our own email communica tions, our narratives moved between intensely felt personal anecdotes that high lighted the pleasures, stresses, joys, and breaking points in each of our own lives, and a sense that we were living through what was, perhaps, the most universal of any event in modern history.

The political rhetoric of the year almost universally relied on a narrative of common experience. But, although a sense of shared experience may be a fun damental human need—and indeed may help us to get through a crisis as it unfolds—the longer-lasting meanings of our “common experience” and what it required of us remains elusive. These past 18 or so months have seen an abun dance of essays that try to make meaning of the pandemic experience. Often, these essays move between highly personal experiences—the domestic minutiae of lockdown life—and an awareness of the lines of shared humanity that crosscross the globe, drawing it close.

Editors’ Introduction 297summer 2021 • volume 64, number 3

“Pandemic essays” such as Zadie Smith’s and the essays that follow in this col lection might be read as an attempt to make something that feels bigger in a world that, to some extent, suddenly became very, very small. We mean this in a double sense: first, in the sense that our lives became confined to the domestic space and the surrounding neighborhood; and second, in the sense that the shared expe rience allowed us to feel closer to those with whom we are separated in space, time, and almost all things. As Arundhati Roy (2020) puts it in her wonderful pandemic essay: “What is this thing that has happened to us? It’s a virus, yes. In and of itself it holds no moral brief. But it is definitely more than a virus.”

Ruby Solomon’s story, “The Unexpected Perks of Flatting During COVID-19,” was the winner of our 55-word story competition. The competi tion was judged by Professor Damien Wilkins, Director of the International Insti tute of Modern Letters at Victoria University of Wellington, and Professor Harry Ricketts, Professor of English Literature, Victoria University of Wellington. The judges said that they liked Solomon’s story “for its appealing voice, its tonal shifts, Figure 1 “NZ stand together”: graffiti in Wellington, New Zealand Credit: Cherie Lacey.

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Turning to the present issue, we present a collection of essays interspersed with short creative pieces. Hearkening back to Perspectives in Biology and Medicine’s 2015 Special Issue on Diagnosis (58.1), we remembered the success of the 55word story as a genre. Its concision and breadth offer an innovative way to en gage with complex experiences. We held a story competition for 55-word stories on the theme of “Living Through the 2020 Pandemic,” and we include four of those stories in this issue.

298 Perspectives in Biology and Medicine as well as the skillful and swift move to the dream, and then the surprise and sweetness of the ending. The unavailable dream mother and the frantic narrator stay alive within that sweetness.” Stories by Rebecca Gray and Michael McLane were runners-up, and the story by Julia Schneider was an honorable mention.

Gatambide-Fernández’s essay, which opens this collection, traces some of the ways in which the pandemic has prompted us to recognize the contradictions— and fragilities—inherent in the notion of “solidarity” itself. From the nightly cac erolazos, or “pot-clanging,” on the balconies of Latin America to show solidarity with frontline health workers, to Donald’s Trump calls for solidarity among his supporters to storm the US Capitol on January 6, 2021, solidarity doesn’t always look the same. If we are to defend solidarity as a central aspect of how societies confront the pandemic, Gatambide-Fernández argues, we need to articulate a theory of solidarity that surfaces its underlying processes.

Jutel’s essay examines how solidarity is built into the fabric of di agnosis itself. Like Gatambide-Fernández and Kelly, she also observes the ways in which the pandemic has both reinvigorated and undermined enactments of na tional solidarity. Her essay reflects on the emergence of a second-wave cluster in a Pasifika community in Auckland, New Zealand, in the latter part of 2020, and how it produced the “wrong” kind of solidarity in parts of New Zealand, which rallied against the community and divided the nation along racial lines. Although

Kelly writes about the ways in which COVID-19 has fundamentally chal lenged, or even ruptured, ontological security. His essay documents the many ways in which the pandemic has undermined and destabilized our routines and daily habits and, in so doing, has introduced a new kind of insecurity to the population. What is clear from his essay is that this new insecurity is experienced differently by different segments of the population—most significantly, by so cially disadvantaged groups, Black and ethnic minorities, and the elderly. “The tenuousness of many people’s material lives,” he writes, “was laid bare very swift ly” by the pandemic. His essay also reminds us that meaning-making activities in regards to the virus (such as this collection of essays) are very much a privilege and a Annemarieluxury.

The stories, along with images of COVID-inspired street art, are scattered among the essays by sociologists, philosophers, educationalists, historians, media scholars, and creative writers, all of whom join us to comment on ways in which the virus is more than a virus. As Rubén Gatambide-Fernandez and Mike Kelly both point out in their essays, COVID-19 might be understood as what medical anthropologist Merrill Singer (2009) has called a syndemic—a concept that de scribes the complex interaction between “epidemic diseases or other disorders and the socioenvironmental context that promotes their interactions” (Gatam bide-Fernández, this issue). Mike Kelly goes on to call the pandemic a “natural experiment in breakdown” and notes that to simply treat COVID-19 as an infec tious disease “is to misunderstand what is going on.”

Cherie Lacey and Annemarie Jutel

Jutel’s essay is the first of a few which come from what we call, down here, “Aotearoa New Zealand.”

Rebecca Olson and colleagues tell the stories of three frontline health workers from Australia and New Zealand. Their essay reveals how these workers became,

Editors’ Introduction 299summer 2021 • volume 64, number 3 a diagnosis of COVID-19 may be a “powerful unifier,” creating new affective and techno-social networks of belonging, it is also necessary to scrutinize the notion of solidarity, since with it “comes enmity, censure, and reproach as much as camaraderie.”

Staying in New Zealand, Molly Robson’s essay starts with her walking along the waterfront near her house moments after listening to Prime Minister Jacinda Ardern’s announcement that the country was going into lockdown. In an at tempt to ward off a rising sense of anxiety, Robson put on her headphones and listened to one of her favorite podcasts. In her essay, she recalls how the experi ence of listening to familiar voices provided a sense of comfort in this moment and beyond, as she rode out the pandemic in a small Wellington flat. From here, her essay moves into a meditation on the role of the human voice in mediating a sense of solidarity and sociality during periods of isolation. For her, the mediated voice can be a way of soothing loneliness and pain, but she warns that it might also contribute to increasing social and political fragmentation as the world enters a post-COVID existence.

To say that different communities experience the pandemic in different ways has become something of a truism over the past year. In her essay, Jennifer Lum explores the material reality of this idea for one elderly Chinese woman in the United States. Lum implores readers to pay attention to this woman’s story, which, in its singularity, also manages to disclose many of the sociohistorical conditions through which the US came to be one of the countries worst affect ed by COVID-19. Her story highlights the fragility and precarity of life among Asian and Asian American elders living in the US, as well as the “staunch” acts of solidarity that persist even during the present spate of anti-Asian hate crimes.

Kathleen Kuehn’s essay similarly interweaves reflections on the political re sponses to COVID-19 via her own, deeply personal experience. As an American expatriate living in New Zealand, her essay is a journey into the politics of love as a response to extraordinary times and an exploration of what this politics asks of us: “self-contemplation, reflection and transformation, and the recognition that liberation hinges on our obligations to others.” Although she doesn’t mean her essay to be read as a “turncoat critique of ‘mean America,’” she can’t help but note the vast differences between her experience of the pandemic in her new home in Wellington and those of her family in the US. For Kuehn, New Zea land’s “Be Kind” politics marked the beginning of her own re-subjectification, of an “uprooting of self from my national-borne identity,” and of finding a place to stand in her new home. Kuehn’s essay also reminds us that, for many, the pandemic provided space to stop and breathe. She calls lockdown a “holiday for [her] soul,” one that shed light on the pre-COVID “grind culture” so many of us bought into and that set her onto her own spiritual awakening.

Cherie Lacey and Annemarie Jutel 300 Perspectives in Biology and Medicine

However, like the Editorial Board of this journal, we know that putting an important subject in a broader scientific, social, or humanistic context—using the tools of disciplines and epistemes outside of those of biology and medicine—ad umbrates matters otherwise obscured. This provides critical distance, a distance in which, paradoxically, the potential for rapprochement and solidarity resides.

The final essay in the collection zooms out again to encompass a broader view of the pandemic. Merle Eisenberg’s essay takes a historian’s eye view of COVID-19, looking both at how previous pandemics have shaped society and at the effects that our present one might have on our collective future. This es say does a wonderful job of crystalizing many of the lines of thought present in the other essays in this special issue: that the pandemic has created a rupture in all kinds of narratives—historical, medical, social, subjective—and constitutes an event so significant it has the power to divide time into a “before” and an “after.”

simultaneously, the victim, victor, and vector in the story of the pandemic—a complex positioning that had potentially harmful effects for these workers’ health and well-being. Their essay looks at how health professionals learned to play their parts in the complex drama of the COVID-19 pandemic and suggests that narrative plays a crucial role in supporting themselves and their colleagues. The essay reminds us of the role of narrative in producing solidarity, and—as Jutel’s essay does—of the real harm that can come from setting up certain segments of the population as “villains.”

As scholars, we are well aware that in any subject (and indeed in the pandemic experience) there is always a surface that needs scratching, deeper meanings that require revelation, alternative readings that power or context has silenced. We see it as the job of this Special Issue to get inside the subject of the Pandemic Experience. But we are also mindful that facile reinterpretations of the “bene fits” of the pandemic or of its creative potential are not enough. To reread the COVID-19 pandemic is not to become apologists for a year like no other. We believe that critical reflection is borne of critical distance, but when trying to write about the experience of living through the pandemic, critical distance is hard to find. As writer Maria Tumarkin wryly observed in an email to Cherie, “Writing about living through the pandemic is like narrating your surgery while you’re being operated on.”

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Cherie LaCey and annemarie JuteL Wellington, New Zealand

Introduction to Syndemics: A Critical Systems Approach to Public and Com munity Health. Hoboken: John Wiley. Smith, Z. 2020. Intimations: Six Essays. New York: Penguin.

Editors’ Introduction 301summer 2021 • volume 64, number 3 References Lacey, C., M. P. Kelly, and A. Jutel. 2020. “Fighting Words in the Antipodes.” Perspect Biol Med 63 (4): 669–82. Lederer, E. M. 2021. “UN Women: COVID-19 Is ‘Most Discriminatory Crisis’ for Women.” Stuff, March 16. Roy, A. 2020 “The Pandemic Is a Portal.” Financial Times, April 4. https://www.ft.com/ Singer,content/10d8f5e8-74eb-11ea-95fe-fcd274e920ca.M.2009.

Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 302–314. © 2021 by Johns Hopkins University Press 302 The Trials of Solidarity a defence

Ontario Institute for Studies in Education, University of Toronto Email: r.gaztambide.fernandez@utoronto.ca.

Solidarity is on trial. As the COVID-19 pandemic continues to spread through out the world, solidarity has become common parlance and is widely invoked by everyone, from world leaders and politicians to academics and community organizers. Yet whether solidarity can play a role in ameliorating the impact of the virus and the extent to which the experience of the pandemic has either strengthened or weakened solidary bonds remain open questions. The answers to these questions hinge on how we understand solidarity and how we use the concept to make sense of experiences and behaviors.

Rubén A. Gaztambide-Fernández

ABSTRACT As the COVID-19 pandemic continues to impact communities around the world, “solidarity” has become a rallying cry, invoked by everyone from world leaders and politicians to academics and community organizers. Bandied about in different ways for a plethora of purposes without a clear definition, these calls for solidarity are often diffused and largely ignore how the very forces that have exacer bated the impact of the pandemic have also put solidarity itself on trial. Making sense of these trials requires a complex understanding of solidarity and a recognition of the contradictions that underly the many uses of the concept. This article traces different understandings of solidarity and points to the promises and opportunities, as well as the puzzles and challenges, that each understanding suggests. The article concludes with a set of questions about solidarity that must be asked as we navigate the global pandemic.

Sometimes solidarity is invoked to acknowledge and describe the different kinds of responses to the crisis, from individual acts and expressions of support to collaboration between governments and international organizations around the world (Broom 2020). Sharan Burrow (2020), General Secretary of the In ternational Trade Union Confederation, described the ongoing lockdowns and the willingness of individuals to confine themselves in order to protect others as “the greatest display of solidarity in human history.” Canadian Prime Minister Justin Trudeau pointed to creative acts to express gratitude and support as the “many signs of solidarity” (Maclean’s 2020). Other times, appeals to solidarity seek to compel particular kinds of actions and desired commitments, whether by individuals, organizations, or nations. UN Secretary General António Guterrez called for an extended debt moratorium for developing countries and urged gov ernments to develop sustainable recovery plans in response to the pandemic (UN News 2020). Sociologist Eric Klinenberg (2020) likewise invoked the need for solidarity, pondering whether US citizens would be able to overcome staggering social fragmentation and individualism in order to confront the virus with a sense of collective duty.

These trials of solidarity are at least of three kinds, each reflecting a different meaning of the word trial. First, the pandemic is shedding light on whether and to what extent solidarity can serve as a strong foundation for a collective response to a major challenge such as a global pandemic. In this sense of being trialed, solidarity is also being put to the test as an antidote to other crises that preexisted and have been highlighted by COVID-19, such as systemic racism and grow ing economic inequality (Gravlee 2020). Second, the COVID-19 pandemic has challenged our sense of solidarity with others both near and far from us (indeed, it has challenged the very sense of us and them). Can solidary bonds withstand the pressure to act in our own self-interest at the expense of others? This question points to the third meaning of trial as judgment: solidarity is on trial. The bonds that bring particular groups together have led some groups to protect their own interests, thereby undermining the quest for the presumed common good that calls for “solidarity” involve. Has solidarity deepened the social rifts that have incresed the harms of the pandemic?

Trials of Solidarity 303summer 2021 • volume 64, number 3

The

However it is invoked, whether to describe or to prescribe behaviors from individuals or institutions, solidarity has been bandied about in different forms for a range of purposes without a clear definition. Most speakers rarely specify what they mean by solidarity, yet they seem to place enormous faith in solidarity as an antidote against the social, economic, and cultural pressures that the pandemic has either caused or intensified. Without a clear understanding of solidarity, howev er, this faith is misguided, as it largely ignores how the very forces that have exac erbated the impact of the pandemic pose a challenge to solidarity. In other words, while solidarity is being trialed as a response to the pandemic, the pandemic is also trialing the limits of solidarity and, indeed, putting solidarity on trial.

The notion of a collective debt that one person can satisfy in its totality is also at the heart of the idea of Christian sacrifice and the notion that Jesus Christ died for the sins (or the debts) of humankind. The notion of a debt or a duty to others (if not necessarily a sacrifice) also undergirds various religious ideas around gener

On Debts, Duties, and Obligations

Rubén A. Gaztambide-Fernández

304 Perspectives in Biology and Medicine

Making sense of these multiple trials requires that we have a complex under standing of solidarity and that we recognize the contradictions that underly its use. Since the start of the pandemic, solidarity has been invoked to describe such a wide array of actions and relationships as to render the term almost a cliché. While it is usually invoked in a positive sense, critiques of solidarity abound. For example, in 2013 Black feminist author and cultural critic Mikki Kendall (2020) coined the hashtag #SolidarityIsForWhiteWomen to call out the continued ex clusion of Black women and their particular experiences from mainstream—or what Quechua scholar Sandy Grande (2015) has called “whitestream”—femi nism. In a recent interview, author Barbara Ehrenreich noted that while solidarity implies a coming together for a shared goal, it can also “turn against us in awful ways,” pointing to the need to recognize difference if we are to enact solidarity effectively (Tolentino 2020). More dramatically, Ehrenreich suggests that solidar ity “can embody so many things—fascism, religious fervor,” and that it is not to be trusted “inherently.” If we are to defend solidarity in light of these critiques, we have to articulate what we mean by solidarity, specify its promises and op portunities, and also come to terms with its limits and the challenges that it poses.

Solidarity has its conceptual and etymological roots in the Roman law of obliga tions and the legal concept of obligatio in solidum, or “solidary obligation.” In legal terms, a solidary obligation happens when two or more people share a debt for which each member of the group carries responsibility for its entirety (Cumyn 2010; Zimmerman 1996). For example, when two or more people co-sign a loan, all borrowers have a solidary obligation and can each be held responsible for the totality of the debt, even if only one borrower defaults. If one debtor pays the entire debt, the others are off the hook. Although in contemporary common parlance solidarity is not specifically framed in relationship to a financial debt, some expressions of, and calls for, solidarity carry this sense of debt or obligation beyond gratitude. For example, the recurring idea that health-care and other “frontline” workers deserve some form of pandemic—or “hero”—pay as way to compensate them for their sacrifices and for putting themselves at risk of illness or death captures this idea of a collective debt (Firozi 2021; Unifor 2021). While not literally a debt that any one person can repay, everyone is held responsible for this additional compensation, whether through taxes or through increased costs for goods and services. The idea carries a sense of collective burden and shared responsibility that is akin to a solidary obligation.

305summer 2021 •

fraternity—one

Like fraternity, many contemporary expressions of solidarity evolved following the French revolution and are linked to liberal humanism, most prominently through the notion of human solidarity articulated by Pierre Leroux (1845). Ex pressions like “All for one and one for all,” made famous by Alexander Dumas’s 1844 The Three Musketeers, and even the motto inscribed on the Great Seal of the United States, E pluribus unum (out of many, one), contain the original conno tation of a group debt in which each individual has an obligation in solidum, or for the totality of a debt obligation. Other more political connotations of solidar ity also evolved during the 19th century. For example, solidarity linked to class struggle and other revolutionary ideas was articulated in Marx and Engels’s 1848 Communist Manifesto and was central to the 1871 Paris Commune. Also during this time, Emile Durkheim (1897) and other French sociologists and philosophers developed the contemporary conceptualization of social solidarity, building on earlier work on social cohesion that can be traced back to Muslim philosopher and social scientist Ibn Khaldun (2015) and his concept of asabiyya (Stauth 2007). Moreover, this was also the time when solidarity was incorporated into Catholic doctrine, setting the foundations for both Liberation Theology in Latin America and Black Liberation Theology in the US (Boff 1985; Cone 1985; Gutierrez 1971).German philosopher Kurt Bayertz (1999) suggests that there are four ways of mobilizing the concept of solidarity. First, a universalist understanding of solidarity is based on the notion that human beings have an obligation or moral duty to support and care for one another and to seek mutual benefit regardless of differ ences. This way of thinking about solidarity is expressed in initiatives by global organizations such as the United Nations and the World Health Organization (WHO), and in the efforts of various countries to provide health assistance and help to other countries. While this view of solidarity as a universal bond might seem like common sense, it is based on the premise that humans are united

Four Uses of Solidarity

The Trials of Solidarity volume 64, number 3 osity and taking action on behalf of others, such as charity in Christianity, tzeda kah and tikkun olam in Judaism, zakat in Islam, or the practice of d¯a na in Eastern religions like Hinduism, Buddhism, Jainism, and Sikhism. In a more secular con text, notions of volunteerism and community service, which are seen as positive acts and encouraged in many contemporary societies, are often framed in terms of an obligation to act. While these obligations are not necessarily understood as debts to be paid on behalf of others, they carry the sense of responsibility for oth ers and of collective wellbeing as a shared burden. More broadly, the notion of of the pillars of the French Revolution, which can also be traced back to the Christian dictate to “love thy neighbor”—is grounded in a sense of duty and obligation to others (Brunkhorst 2005).

A second understanding of solidarity, according to Bayertz (1999), is manifest ed in the actions taken by governments and state officials but also in the willing ness of citizens to follow the guidelines and restrictions that are imposed by the state. Civic solidarity is premised on the assumption that it is the state, and not the market or a higher power, that should be responsible for ensuring the wellbeing of a society. Civic solidarity is an expression of a sense of duty or responsibility to fellow citizens and members of civil society; it also underlies the notion of taxes or even charitable donations in support of groups in need. In the context of the pandemic, staying at home or maintaining physical distancing are acts of civic solidarity. Nevertheless, we have seen that not all citizens are willing to limit their sense of individual freedom in the name of the common good, and some insist that maintaining a free and open market should override the public health imperatives. In the early days of the pandemic, for instance, some business owners were caught raising the price of essential goods, and there continues to be debate about whether freedom of religion or the right to protest should be curtailed in the interest of public health (Ro 2020; Zizek 2020).

Rubén A. Gaztambide-Fernández 306 Perspectives in Biology and Medicine around certain values and shared needs. This rather fragile assumption loses res onance when conflict emerges around values or around the needs of groups or nations. For example, while WHO (2020) originally touted its efforts to support the development of a COVID-19 “Solidarity Trial” as an expression of unprec edented collaboration among nations, the emergence of what has been called “vaccine nationalism” clearly shows the fragility of such notions.1 Moreover, this universalist approach to solidarity ignores power dynamics through which certain moral values are imposed and interpreted and how and to whom solidarity action is directed. This is perhaps the most important trial of universal or human soli darity: whether it can serve as a basis for fighting against the power dynamics that shape whether and how humans are capable of assisting each other.

1In his indictment of “vaccine nationalism,” WHO chief Tedros Adhanom Ghebreyesus (2021) de clared that “To the virus, we are all one herd. To beat it, we must act as one community,” clearly echoing the sense of human solidarity. Ghebreyesus describes vaccine hoarding among wealthy nations as counterproductive, pointing out that ensuring the wide distribution of the vaccine among the world’s poorest nations would both slow down the spread of the disease and reduce the “possibility that new variants will develop vaccine resistance.”

Ensuring that individuals follow the directives of the state in the absence of a sense of connection or reciprocity with those who are most affected by the circumstances and who benefit most directly from civic guidelines is the trial of civic solidarity. Civic solidarity cannot be taken for granted. While mostly rely ing on persuasion and appealing to a sense of moral duty, the state often ends up mobilizing its legal and repressive state apparatuses to ensure that citizens observe the rules (Althusser 1971). The state can impose fines or even arrest those who don’t follow the guidelines. This trial of civic solidarity illuminates the challenge of extending the equal protection of rules or laws to societies composed of inter est groups that are divergent and whose commitments and pursuits do not easily

For Durkheim (1897), for example, preindustrial societies were characterized by what he called “mechanical” solidarity, based on the prescribed roles of un differentiated individuals in tightly knit communities, while large, industrialized societies were characterized by an “organic” solidarity, in which individuals rely on unfamiliar or distant others to perform duties enforced through contractual obligations. Yet these different modes of social solidarity are not exclusive.

The Trials of Solidarity 307summer 2021 • volume 64, number 3 align. Even as crises like the pandemic bring some social groups to coalesce and collaborate, they also highlight inequalities and the challenges of ensuring com petingThisinterests.recognition of competing group interests points us to Bayertz’s (1999) third use of the concept: social solidarity. Social solidarity is less interested in mak ing moral claims about why and how individuals should care for the wellbeing of others, and more in documenting and analyzing the ways in which societies ensure cohesion. This issue becomes increasingly more challenging to answer as societies become larger, more complex, and more diverse, and as the sense of responsibility to others becomes more ephemeral and abstract (Crow 2002).

When Klinenberg (2020) questions whether US citizens have the capacity to overcome the extreme social fragmentation that the four years of the Trump presidency made apparent (if not also made worse), his argument is premised on the circular assumption that social solidarity is both the basis of as well as premised on a sense of cohesion, even among competing groups. In other words, his argu ment is that a lack of social solidarity is what produces fragmentation, but also that what is needed for social solidarity is more cohesion. This “functionalist” view assumes that societies are organized around a set of roles that different groups and individuals fulfill to ensure collective wellbeing. Even as groups might have competing values and interests, in order for them to pursue their goals and fulfill their social roles, they must also have a strong sense of cohesion and interdepen dency. That sense of cohesion evolves through collaboration and the sharing of available resources. By contrast, a “conflict” view of social solidarity argues that social transformation is the result of competition among “status groups” that limit access to their material and symbolic resources (Weber 1922). In this sense, social solidarity is about the cohesion of particular status groups as they secure the pow er to pursue their interests in competition with others. As competition among status groups becomes more or less attenuated through conflict or collaboration, society moves between more or less stability, which in turn is what produces socialUnderstoodchange. this way, social solidarity in the US is manifest in the intimate relationship between Donald Trump and the far-right conservative groups that persist in minimizing the impact of the virus on health and instead underscore the impact on the economy. When Trump spoke to the crowd of supporters that would eventually attack the Capitol, he used language that projected solidarity: “Our country has had enough, we will not take it anymore”; “If you don’t fight

like hell you’re not going to have a country anymore”; “We’re going to walk down to the Capitol and we’re going to cheer on our brave Senators and Con gressmen and women, and we’re probably not going to be cheering so much for some of them.”

While the concept of social solidarity helps make sense of all kinds of move ments, from labor to the alt-right, as well as the tendency of such movements to close ranks and oppose other movements that might pose a threat to their interests, Bayertz (1999) points to political solidarity as a fourth use of the con cept. Political solidarity highlights the importance of inter-group connections and alliances and is particularly helpful in making sense of commitments to causes that might seem to undermine particular interests and of alliances between groups

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The way Trump used the first person plural and invoked a sense of collective action and shared purpose appealed to a sense of solidary obligation among his supporters, who would eventually “fight like hell” and threaten to kill those who supported Biden’s election victory. In this instance, social solidarity among Trump supporters put civic solidarity on trial, and the lack of determina tion from Republican elected officials to hold Trump accountable suggests that the former won the day. This is not a failure of solidarity undermined by frag mentation, but an example of the strength of social solidarity among particular groups in conflict with each other. Associating a term like solidarity with right-wing conservative groups might strike progressive readers as anathema. Yet the left does not have the market cornered when it comes to solidarity, nor does embracing progressive politics guarantee a solidary stance toward others. As cultural geographer David Feather stone (2012) shows, in the labor movements of the early 20th century many artic ulations of solidarity embraced Whiteness and anti-Black racism as an organizing principle. More recently, notions of solidarity have been used by right-wing pop ulist leaders, such as Hungarian Prime Minister Viktor Orbán, to justify the clos ing of European borders to refugees (Spiegel 2016). As Austrian sociologist Jörg Flecker and his colleagues (2019) have argued, “Far-right parties in Europe have benefitted from intensified socioeconomic change following the financial and economic crisis in 2008 as well as from declining trust in public institutions,” but this has not resulted in less support for state welfare or civic solidarity. In fact, the conservative parties’ “trump card of welfare chauvinism is thus based on both a more welfare-state-friendly rhetoric and a more aggressive xenophobic stance. In this process, the far right has laid a claim to the concept of solidarity and no longer leaves it to the political left.” In the context of the current pandemic, the emer gence of what has been called “vaccine nationalism” can in fact be understood as an expression of civic solidarity within a specific national context, where duty to fellow citizens overrides any solidary obligations to those in other countries. In short, social solidarity plays a significant role in the internal cohesion of divergent groups and movements and is not a characteristic of a particular political agenda, orientation, or commitment.

The differences (Scholz 2008). Political solidarity is characterized by the ac tions of one group on behalf of another, even when the interests of the latter might contradict or undermine the interests of the former. For instance, when those who identify and are identified as White commit to anti-racist work that undermines their own White privilege, they are engaging in forms of political solidarity. Likewise, when settlers engage Indigenous communities in struggles around the return of land, or when men invest in doing anti-sexist work, or het erosexual or cis-gendered individuals commit to advancing LGBTQ rights, these are examples of political solidarity. Often these commitments are grounded on a critique of how the privilege enjoyed by some is directly linked to the oppression and marginalization of others and how this relationship is untenable, unethical, or perhaps even immoral. This may be why political solidarity is usually associated with a progressive understanding of equity and with struggles against discrimina tion, oppression, exploitation, and violence.

While one could argue that political solidarity also brings together groups that might not otherwise have much in common, such as alt-right and religious right conservatives, alliances occur when there is a coincidence of goals, like oppos ing the outcome of an election or securing access to a resource—a vaccine, for instance. As such, these movements are not premised on an underlying obliga tion. Unlike other kinds of alliances, political solidarity requires a larger common purpose, especially when the work demands confronting opposing or contradict ing interests that are nonetheless linked to a larger commitment to justice or an acknowledgment that the destinies of various groups are linked together. The maxim “Nobody’s free until everybody’s free,” most famously articulated by Black civil rights activist and organizer Fannie Lou Hamer (2014), captures the underlying sentiment and commitment that drives political solidarity.2

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The common association of political solidarity with progressive and radical left movements might be related to the particular ethic that such movements some times embrace. The commitment to understand, confront, and when possible overcome the contradictions and tensions that emerge when groups with osten sibly conflicting interests come together is, at least in principle, central to political solidarity. This may also explain why political solidarity seems to be more fragile: it is contingent upon a willingness to engage in frank and challenging conversa tions about the complex intersections between different dynamics of oppression. For example, recognizing how colonialism, ableism, racism, and sexism intersect to produce the conditions that lead to different health outcomes is essential for making decisions about how to allocate resources in response to a pandemic. Yet this recognition does not make decisions about vaccine distribution, for instance, any easier, particularly when some marginalized communities have a fraught re lationship with the health-care system and a history of being used as test subjects 2In her speech, Hamer drew links between Black liberation, the feminist movement, and the anti-war movement, as well as to the epidemic of drug use affecting her community.

Defending Solidarity Bayertz’s four ways of understanding solidarity point to some of the contradic tions and problems that arise when we use the concept without specifying the context, commitments, and communities involved. If we seek to defend solidari

In the context of crises like a pandemic, when solidarity becomes a rallying cry for communities to come together and for individuals to make necessary sac rifices, the same social differences can at once exacerbate the unequal impact of such crises while also straining social ties, putting solidarity on trial. COVID-19 is part of what medical anthropologist Merrill Singer (2009) has called a syndemic, a concept that helps us understand the complex interaction between “epidemic diseases or other disorders and the socioenvironmental context that promotes their interaction” (29). As Clarence Gravlee (2020) argues, it is well established “that communities most impacted by new epidemics often are already facing oth er threats to their health,” and this includes social and systemic “epidemics” like racism, sexism, and ableism. These are also the forms of political oppression and social marginalization that, on the one hand, compel a call to some forms of so cial and political solidarity, while on the other strain the social bonds that secure human and civic solidarity. Indeed, solidarity itself may play a role in exacerbat ing the synergies that produce the unequal impact of the COVID-19 pandemic across the planet. As some groups enact social solidarity by closing ranks to hoard economic resources, or as governments enact civic solidarity by hoarding vac cines and closing borders to refugees in the name of national security, inequality and violence increase. These are the trials of solidarity, when its values must be questioned and challenged, and when its defense must rely on a complex and robust understanding of its dynamics.

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in medical experiments. To some extent, political solidarity is always already on trial, in the sense that it is always contingent on a recognition that inequality is embedded in the very conditions that produce the solidary relationship. The precarity of solidary relations also presents a challenge to other kinds of solidarity, as these are contingent on a certain willingness to overlook the in equalities and injustices that actually sustain those relationships. A universalist call to solidarity is put on trial when it ignores the dynamics of exclusion that produce the very category of the “human” and that shape who is entitled to be vaccinat ed, when, and how that process unfolds. Likewise, social solidarity is put on trial when the assumed coherence of any particular group is challenged by internal differences, or when the boundaries of who belongs and who has the right to speak on behalf of the group become contested under the pressure of crises like a pandemic. Civic solidarity faces the trial of disagreements over which policies are likely to secure collective wellbeing and how to prioritize the different needs of a community, and about the balance between individual freedoms and the need to contain the spread of the virus.

A third and important characteristic of solidarity is that all solidary action is both transitive—in the sense that it is always directed toward others and defined by those relationships—and also reflexive—in the sense that it is also directed toward the self and affects the one who acts in solidarity (Gaztambide-Fernández 2012). This is even apparent grammatically, when we consider that in some Ro mance languages the verb form of solidarity implies an action on the self: yo me solidarizo; nous nous solidarisons. Being in solidarity, or “solidarizing oneself,” is an

However it is understood, solidarity is relational, in the sense that no one is in solidarity on their own It is in relationship to (and against) others that we devel op the contours of our own self-understanding. Defending as well as recognizing the limits of solidarity requires that we carefully consider who we are in solidarity with, as well as what defines the terms and the boundaries of those relationships.

ty as a central aspect of how societies confront the challenges of a global pandem ic that is also a syndemic, we must articulate a theory of solidarity that surfaces its underlying processes. The very qualities that define solidarity point us to the questions we must ask in order to understand inequality and competition, as well as to find ways of navigating the mire that syndemics present. To that end, I offer that solidarity, however it is defined, is always circumscribed by (1) a particular set of relationships, as well as (2) a specific set of intentions (Gaztambide-Fernán dez 2012). These relationships and intentions organize the expressions and move ments of solidarity, but they also set limits to what can be accomplished in the name of solidarity. Defending solidarity requires an ethical reckoning with these limits and a recognition of how solidarity not only fails in the trial of confronting crises, but how it is sometimes responsible for deepening the fractures that result in the startlingly unequal impacts of health crises.

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For example, when organizations like WHO promote a sense of universal hu man solidarity in order to bring global actors to collaborate on the development of a vaccine, it is important also to name how global capitalism and economic interests play a central role not just in the speedy development of a vaccine, but in how it is distributed nationally and internationally.

The

Solidarity is also intentional, and therefore it is crucial to name the intentions of the solidary movement and the contingencies that shape the circumstances that have led to the call for solidarity. Solidarity entails agency, in the choice to take on roles, in the consent to embrace group identifications, and of course in the enactment and confirmation of social expectations. This means that solidary ac tion always has a purpose, even when that purpose is not clearly articulated. This is perhaps why a fascist leader like Donald Trump can get away with promoting violence among his supporters while claiming innocence for the outcome of such violence. It is also why wealthy nation states engage in practices that limit the access of poor nations to vaccines, even though doing so undermines the goal of limiting the spread of COVID-19 (Ghebreyesus 2021). The competing goals of civic solidarity and human solidarity may not be articulated, yet these goals can play a synergistic role in the failure to combat the disease at all levels.

Rubén A.

Elsewhere, I have argued that without such a shift, there is no solidarity (Gaz tambide-Fernández 2020). Simply expressing support for an idea or extending sympathies to others, without action, does not amount to solidarity. When we invoke the term, it is crucial that we also ask what we are willing to do or to give in order to advance the call to solidarity. Such questions are helpful as we reflect on the values and the ethical and polit ical commitments that lead us to respond to the call to solidarity. In the absence of such a reflection, solidarity can “turn against us in awful ways,” as Barbara Ehrenreich reminds us (Tolentino 2020). This is clearly evident in how WHO’s call for an international Solidarity Trial to develop treatments and a vaccine for COVID-19 quickly turned into “vaccine nationalism.” Such turns often under mine solidary projects, from progressive solidarity movements to the distribution of vaccines during a global pandemic. Solidarity cannot be taken for granted, and its success depends on our ability to recognize its limits, as well as our own limits in coming to know and understand the experiences of others. Recognizing the biases in what drives us to be in sol idarity, and with whom, as well as the boundaries implied in our commitments, requires a constant reflection about the relationships, intentions, and our willing ness to be transformed and changed by solidary action. However we define it, solidarity cannot be something we simply claim, but something we do. It is only in the doing that we can put solidarity on trial, and putting solidarity on trial also puts ourselves on trial. In these challenging times, when, according to Canadian journalist Naomi Klein (2007, 2020), “crisis blows open the sense of what is possible,” pursuing solidarity also requires creativity. We must build new ways of being with each other and in relationship to the earth (Gaztambide-Fernández 2012). Creative solidarity involves rethinking the values that brought us to this present situation and the intentions that inspire us. It also requires new narratives about who we are, to what and where we belong, and with whom and to whom we owe col lective commitments. This is the trial of solidarity: whether we have the capacity to transform and to make the world, and ourselves, anew.

References Althusser, L. 1971. “Ideology and Ideological State Apparatuses (Notes Towards an In vestigation).” In Lenin and Philosophy and Other Essays, 85–126. New York: New York University Press. Bayertz, K. 1999. “Four Uses of ‘Solidarity.’” In Solidarity, ed. K. Bayertz, 3–28. Dor drecht: Kluwer Academic. Boff, L. 1985. Church, Charism and Power: Liberation Theology and Institutional Church. New York: Crossroad.

action that transforms the actor or subject: it requires a shift in one’s condition.

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Foreign Policy, Feb. 2. Grande,alism-harms-everyone-and-protects-no-one/.https://foreignpolicy.com/2021/02/02/vaccine-nationS.2015. Red Pedagogy: Native American Social and Political Thought. Lanham, MD: Rowman & Littlefield. Gravlee, C. 2020. “Systemic Racism, Chronic Health Inequities, and COVID-19: A Syndemic in the Making?” Am J Hum Biol 32 (5): 1–8. DOI: 10.1002/ajhb.23482. Gutierrez, G. 1971. Teología de la Liberación: Perspectiva. Lima: CEP. Hamer, F. L. 2014. “Nobody’s Free Until Everybody’s Free ” In The Speeches of Fannie Lou Hamer: To Tell It Like It Is, ed. M. Brooks and W. Davis, 134–39. Houck: Uni versity Press of Mississippi. Kendall, M. 2020. Hood Feminism: Notes from the Women That a Movement Forgot. New York: Viking. Khaldun, I. 2015. The Muqaddimah: An Introduction to History. Abridged ed. Princeton University Press. Klein, N. 2007. “Disaster Capitalism.” Harper’s 315: 47–58.

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Solidarity: From Civic Friendship to a Global Legal Community. Cam bridge: MIT Press. Burrow, S. 2020. “The Greatest Display of Solidarity in Human History.” Medium, March 30. Cone,tory-d63b67a449d5.https://sharanburrow.medium.com/the-greatest-display-of-solidarity-in-human-hisJ.1969. Black Theology and Black Power. New York: Harper & Row. Crow, G. 2002. Social Solidarities: Theories, Identities, and Social Change. Buckingham: Open University Press. Cumyn, M. 2010. “Responsibility for Another’s Debt: Surety, Solidarity, and Imperfect Delegation.” McGill J Law 55 (2): 211–55. DOI: 10.7202/045085ar. Durkheim, E. 1897. De la division du travail social. Paris: Les Presses Universitaire de France. Featherstone, D. 2012. Solidarity: Hidden Histories and Geographies of Internationalism. Lon don: Zed Books. Firozi, P. 2021. “Nation’s Most Populous County Mandates Extra $5 in Pandemic ‘Hero Pay’ for Some Grocery Workers.” Washington Post, Feb. 24. Flecker,tonpost.com/business/2021/02/24/hero-pay-grocery-workers/.https://www.washingJ.,etal.2019.“Right-WingPopulismfromaSolidarityPerspective,” Global Dia logue 9 (2). Gaztambide-Fernández,idarity-perspective/.https://globaldialogue.isa-sociology.org/right-wing-populism-from-a-solR.2012.“DecolonizationandthePedagogyofSolidarity” Decolonization 1 (1): 41–67. https://jps.library.utoronto.ca/index.php/des/article/ Gaztambide-Fernández,view/18633.

R. 2020. “What is Solidarity? During Coronavirus and Always, It’s More Than ‘We’re All in This Together.’” Conversation, April 13. Ghebreyesus,were-all-in-this-together-135002.conversation.com/what-is-solidarity-during-coronavirus-and-always-its-more-than-https://theT.A.2021.“VaccineNationalismHarmsEveryoneandProtectsNoOne.”

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Klein, N. 2020. “Movement Building in the Time of the Coronavirus Crisis.” Rising Majority, April 2. https://therisingmajority.com/events/movement-building/. Klinenberg, E. 2020. “We Need Social Solidarity, Not Just Social Distancing.” NY Times, March 14. Leroux,cial-distancing.html.https://www.nytimes.com/2020/03/14/opinion/coronavirus-soP.1845.

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De l’Humanité: De son principe, et de son avenir. Paris: Perrotin. Maclean’s. 2020. “Trudeau’s Sunday Coronavirus Update: ‘For Far Too Many People, Home Isn’t a Safe Place to Be.’” Maclean’s, March 29. Ro,isnt-a-safe-place-to-be-full-transcript/.news/canada/trudeaus-sunday-coronavirus-update-for-far-too-many-people-home-https://www.macleans.ca/C.2020.“CanPriceHikesbyBusinessesEverBeJustified?” Worklife, BBC, April Scholz,nesses-ever-be-justified.https://www.bbc.com/worklife/article/20200427-coronavirus-can-price-hikes-by-busi28.S.2008.

Political Solidarity. University Park: Pennsylvania State University Press. Singer, M. 2009. Introduction to Syndemics: A Critical Systems Approach to Public and Com munity Health. San Francisco: John Wiley. Spiegel. 2016. “Orbán Praises Merkel’s Service to Europe.” Spiegel, Oct. 20. Stauth,ste-um-europa-a-1117520.html.www.spiegel.de/politik/ausland/viktor-orban-lobt-angela-merkel-fuer-verdienhttps://G.2017.“Asabiyya.”In The Blackwell Encyclopedia of Sociology, ed. G. Ritzer. San Francisco: John Wiley. DOI: 10.1002/9781405165518.wbeosa066. Tolentino, J. 2020. “Barbara Ehrenreich Is Not an Optimist, but She Has Hope for the Future.” New Yorker, March 21. Unifor.site-share&utm_brand=the-new-yorker.for-the-future?utm_source=onsite-share&utm_medium=email&utm_campaign=onthe-new-yorker-interview/barbara-ehrenreich-is-not-an-optimist-but-she-has-hope-https://www.newyorker.com/culture/2021.“AllFrontlineHealthCareWorkersDeserveOntarioPandemicPay.” Unifor News, Feb. 3. health-care-workers-deserve-ontario-pandemic-pay.https://www.unifor.org/en/whats-new/news/all-frontlineUN News. 2020. “UN Chief Calls for ‘Solidarity, Unity and Hope’ in Battling COVID-19 Pandemic.” United Nations, April 30. https://news.un.org/en/sto Weber,ry/2020/04/1062972.M.1922.“Class

Rebecca Gray

Rebecca Gray is a social researcher with a PhD in public health and a particular focus on mixed-methods health promotion research. She is currently on parental leave from a Senior Research Fellow position at Victoria University of Wellington’s School of Health. Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 315. © 2021 by Johns Hopkins University Press 315 Cells in Hiding

55-Word Stories

We become a closed cell, containing three people. He is 21 months, seems far from“People“two.”have to stay at their houses.” “Hiding!” “Well, yes.” We learn of other cells. We might become four. Levels change, hidden cells are multiplying. He turns two. Grandparents can visit. We can tell them what has been hiding.

and

Department of Public Health and Primary Care, University of Cambridge. Email: mk744@medschl.cam.ac.uk. Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 316–337. © 2021 by Johns Hopkins University Press 316

Ontological Uncertainty and Ontological Threat COVID-19 the UK

Michael P. Kelly

ABSTRACT Ontological security describes a state in which individuals feel that their life has meaning, which they and others understand and share; in which their life and continued existence is secure; and in which their sense of self is stable. In social life, this security is challenged from time to time, and acutely so in certain extreme circumstances. This essay argues that the experience of COVID-19 in the United Kingdom, with its concomitant mortality and the response of government, have served to challenge ontological security. At the start of lockdown and in the weeks that fol lowed, the government’s strategy undermined that sense of security as well as trust in government itself. As the pandemic continued this had quite different consequences for different segments of the population, and these consequences may in turn interact with the disease itself.

The COVID-19 pandemic has undermined the routines and practices of or dinary everyday life in the United Kingdom. This has had serious conse quences for ontological security—the sense that life is reasonably predictable and meaningful, and that the future holds few surprises (Giddens 1991). At the time of writing—mid-October 2020—ontological security in the UK has been un dermined for many. For some, especially socially disadvantaged groups, Black and ethnic minorities, and the elderly, this is acutely the case. Ironically, this

Ontological Uncertainty and Ontological Threat 317summer 2021 • volume 64, number 3 circumstance stems as much from the actions of government and public health authorities as from the disease itself.

I am a retired public health scientist and a sociologist. What follows is a per sonal set of observations on the pandemic in the UK, drawing on my training in both arenas. It is not based on an empirical investigation, but on my personal ex perience of living in the UK during the COVID-19 pandemic and conversations with colleagues, friends, family, and acquaintances, as well as on reading pub lished scientific papers, pre-prints, newspapers, looking at the UK Government’s official website, and listening to and viewing radio, television and some social media. I do not claim it is systematic, but I use a well-established set of theoretical sociological theories to make sense of what I have seen and heard. This might perhaps form the basis for further empirical study in due course.

Social Life and Its Delicacy Social life is delicate. Its fragility is apparent at junctures where the taken-for-grant ed normality of routine interaction and thoughts are fractured or disrupted. That has been what has happened since the pandemic took hold in the UK. The result is not social breakdown, but the effects on the populace have been to create a growing sense of weariness and despair about the future of the pandemic, and about the authorities’ inabilities to do very much about it. Harold Garfinkel’s (1967) experiments in ethnomethodology demonstrated that social life is deli cate. He got ordinary people to behave in ways in which minor infractions of social intercourse were deliberately engineered—for example, asking his students to go home and act as if they were strangers in their own homes. A little bit of role-play, but one that quickly led to acute uneasiness in normal family life. COVID-19 has been a natural experiment in breakdown—if not fracture—aris ing from the disease, and that breakdown has been partly deliberately and partly unintentionally engineered by government. Garfinkel’s experiments were about the micro social world, but sociology has long been interested in macro structural disruptions to social life, too. While acknowledging that social life is ordinarily in a continuous process of flux and change, sociology notes that there are also occasions when societies transform vi olently or seismically. Classical sociology focused on the transition, mostly grad ual, from preindustrial to industrial societies, as evidenced in the work of such sociological pioneers as Marx, Weber, and Durkheim. But classical sociologists also examined how and why—in spite of both continuous and minor and major social realignments—social systems have a profound tendency towards continu ity (Giddens 1971). Continuity might yet be a reason to be optimistic about COVID-19 into the longer run, but what of the uncertainties created to mental health, to jobs, to everyday social life, and indeed to existential futures, along the way?

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At first there was a subtext that implied that, serious as this was, these were short-term measures. However, as the regulations continued for months and then a second wave of infections was predicted and observed, the idea that these were temporary disruptions has given way to a more-or-less explicit recognition that the readjustments to everyone’s lives would have to become normalized, at least for the time being. In October 2020, as infections began to increase once again and new heavy-duty restrictions were being placed on social and economic life, it was not clear, scientifically, whether and when the disruptions might come to an end, and what the implications longer term might be. But how do we make sense of this? There is no shortage of journalistic and political and medical comment. I want to try to take a more analytic and socio logical view. Agency and Structure

The COVID-19 pandemic has been socially disruptive. Whether in the de cades to come it will be viewed as seismic, or as merely a blip, remains to be seen. The narratives and discourse from medical, public health, political, and media sources have tended to emphasize the idea of a major disjunction. At the outset, narratives derived from experiences of war were particularly important, with the virus depicted as an enemy to all intents and purposes similar to a national foreign power engaged in aggressive warlike invasion. In the UK the claim was made that “We are all in this together” (Lacey, Kelly, and Jutel 2020). Political leaders drew upon this kind of imagery and metaphor to create feelings of solidarity and unity, but such solidarity has since begun to fracture in the UK. Nevertheless, the overarching importance of external threat initially held sway. Citizens were asked voluntarily to submit to new rules and regulations about socializing, going to bars and restaurants, going to work, travelling, and shopping. Schools, univer sities, and workplaces were closed down, and for periods people were variously encouraged—or required—not to leave their homes, or to do so only for very specific reasons.

There are two elements in social life that shape the nature of the social world: agency and structure (Giddens 1979, 1982). Humans have a sense of being unique individuals acting and thinking individually and in ways that are of their own choosing. They have agency. And indeed humans do, think, and say bil lions and billions of different things every moment, of every hour of every day. These include the mundane as well as the momentous. We might assume that out of these billions of actions we would simply have a chaotic social world of impenetrable complexity and essentially unknown and unknowable. Instead, out of these billions of different things people think, say, and do, patterns emerge. These patterns are often referred to as structures. The structures are real, not in a concrete sense, but in the sense that they are all around us and constrain what

The pandemic has had a significant effect on human agency. In order to break the lines of transmission of the virus, the UK Government has sought to change behavior in very significant ways, by drawing up a host of new regulations and rules that determine what people can or cannot do. In the four nations of the UK, there has been a continuous flow of such new controls since March 2020, as the various levels of government have sought to change structures to constrain agen cy. This has been done in the name of public safety and health protection, and at least initially, these measures appeared to be effective. People did as they were told. They internalized the messages about dangers and protecting the National Health Service (NHS), and gradually the numbers of cases subsided. But at the same time the very nature of society subtly shifted.

The overall result is that society has a systemic quality, which is over and above any one individual’s ability to change it. Of course, down the centuries, political leaders and individuals with their hands on the levers of state and economic pow er have sought to influence the behavior of others (Kelly 2016). Some individuals and groups have greater access to power and the ability to try to make others do what they want, but even those with absolute power are constrained in various ways by the structures around them. However, many people have only very lim ited access to power (Mann 1986). The options open to them are narrower and more limited. Although even in these circumstances people still have agency and will exercise it within the bounds of the possibilities that the structures allow, the constraints imposed by the powerful are real. In the case of the pandemic, efforts to protect health may also contribute to a toxic mix of disadvantage and disease interacting together.

Self and Ontological Uncertainty

What of the consequences? At the heart of interactions between action and struc ture is the human self. Each of us has a self, a profound sense of being a unique individual separate from others. The self is that part of our being, which is expe rienced as making decisions—major and minor—about our day-to-day life. We have a sense of who and what we are, and what our place in the world is. Some

Ontological Uncertainty and Ontological Threat 319summer 2021 • volume 64, number 3 we are able to say, think, and do. Examples of structures are such things as peer group pressure, social norms, formal legal and regulative systems, the market, social classes, castes, statuses, and patterns of advantage, discrimination, and disad vantage. These structures arise out of the multitude of individual actions but si multaneously limit, constrain, and sometimes determine which individual actions are possible. Further, ordinary human agents are varyingly aware of the structures around them. They are familiar parts of everyday life, and people orient their actions accordingly (Bourdieu 1990, 2000). Action and structure are in continu ous processes of interaction, and the consequences of these interactions are social continuities and social change.

For most of us, the thinking self has a sense of its own continuity in time and across place. It will recognize that it is the same person it was this morning when it had breakfast and when it enjoyed a movie last week, or when it was with friends at dinner a year ago. It will know that it is the same person it was when a student, a teenager, and a child. It will also recognize and know that it has changed at different points in its lifetime. There is ontological continuity, a continuous sense of being in the world. With continuity comes security. The self knows what to do in its day-to-day routine interactions. Most of us also have a clear sense of how we will manage particular tasks and problems in the future, mostly based on how we have done so in the past. That continuity in the substan tial self means that the judgment processes we employ and the decisions we make have a routine quality. The things we do may be enacted with reliable degrees of competence. Into the future, while recognizing that it is in part uncertain, we work on the assumption that on the whole things are likely to much as they are today—tomorrow, next week, and even next year and beyond. In sociological jargon, we say that social life is “highly recursive,” and much of the time, we just take it for granted (Giddens 1979, 1982; Schutz 1964, 1967, 1970).

All of us will have some passing experience of this kind of breakdown. For example, this may happen in panic attacks, in moments when we feel lost in completely unfamiliar circumstances and situations, or when confronted with by someone intent on causing us harm and threatening physical violence. But for most of us these episodes are transient: we are able to regain our sense of continu ity of self and reestablish some feeling of normality. However, the acute moments that transmute into chronic experience may lead to a separation from attachment to the familiar self and create a loss of ontological security. The certainty that is normally bound up with self drains away, and the subject is left to seek to es tablish some new sense of being in the world. Meaning needs to reestablished, because the emergent meanings from the events triggering these feelings are in consistent with one’s sense of self.

The potential for extreme discomfort and ontological insecurity comes from the experience that events going forward are neither predictable nor reasonable, and therefore that the continuities in the substantial self are threatened. There is a realization that our personal autobiography is about to change in unwelcome ways, and that our normal ways of behaving are unhelpful—or worse, dangerous and damaging. In such moments, we may have to do things we have never done before and for which we have little or no competence. There is no script or recipe to draw upon to know what to do or how to do it (Shove, Pantzar, and Watson 2012).

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aspects of our self are transient: I am buying a newspaper, I am enjoying a walk in the countryside. Other aspects of self are more substantial: I am a writer, I am a sociologist. The substantial self constitutes those aspects that the person carries from situation to situation across the life course (Kelly et al. 2018).

In such acute circumstances, the empirical sense data the individual is process ing are often inconsistent with previous firsthand experience of dealing with the world (Kelly et al 2018). This may lead the individual to draw upon vicarious experience—in other words, to rely on priors that reflect understandings of dan ger, threat, death, and injury described by others. While this throws the threat into stark relief, it provides little by way of skills or competencies to handle the current situation. Humans have high degrees of ability to cope with difficult and stressful situations.

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Lazarus’s important work on this ability describes the primary part of the process as “threat recognition,” and the second part as determining what to do about it (Lazarus and Folkman 1984). The problem with acute onto logical insecurity is that the threat is tangible, but knowing what to do as an active process is far from clear.

Ontological security/insecurity is not binary. Clearly there are times where insecurity is acute, but it is probably more helpful to think of our ontological se curity as being on a spectrum. Where we are at any given moment on that spec trum will reflect our current, past, and anticipated future circumstances. There are some individuals and groups for whom insecurity is, or becomes, chronic rather than acute—for example, some refugees, the marginalized, the homeless, some persons whose illnesses are highly stigmatized or life threatening, those who are systematically discriminated against, and people trying to survive in conflict zones or in regions affected by famine. Anyone who claims to be taken seriously as a human, but whose claims are denied for whatever reason, has their onto logical security challenged (Kelly et al. 2021). Societies and communities where economic and political security cannot be taken for granted create the potential for challenges to ontological security.

Nearly all of us experience a more-or-less salient background ontological in security, perhaps reflecting such things as knowledge of the threat to human existence from the climate emergency, the insecurity of global food and water supplies, or even just the recognition of our own mortality. But the extent to which these things are experienced as an immediate threat to self is variable. Humans have varying resources, as well as very well-developed ways of coping with threats and of keeping such fears at bay, but these are not limitless. The argument here is that wherever people are on the spectrum of security, the pan demic is likely to have impacted them. How those effects are felt, however, are likely to be patterned according to well-known, preexisting social and economic conditions.

The Experience of the Pandemic

So, how? In Britain in the first weeks of the COVID-19 pandemic, immedi ately after lockdown was imposed, ontological security was threatened—quite deliberately—by government messaging, and then rendered uncertain as events

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unfolded. The ways that ordinary people habitually dealt with some life stress ors became inappropriate or redundant, and the predictions that they were able to make about the future were increasingly discordant with the world as it was turning out to be. None of this is very surprising, although the way it happened is worth a closer look.

The public in the UK spent the Christmas and New Year celebrations at the end of 2019 untroubled by the news of an outbreak of a pneumonia-type disease in a place in China most Britons had never heard of. The first main meeting of the government emergency committee took place in the UK at the end of Janu ary 2020. The public did not immediately engage. Through February, the NHS functioned as normal. In most hospitals no special precautions were obviously or ostentatiously put in place. In the middle of February, I was admitted as an emergency to a major teaching hospital in Edinburgh with a reoccurrence of a long-standing health problem. During my admission and treatment, none of the medical or nursing staff mentioned coronavirus or practiced any kind of out-ofthe-ordinary clinical social distancing or other precautions. I made a full recovery and wrote to the hospital soon after my discharge to thank them for my excellent care. On reflection, no one (including me) seemed to have been very worried, at least on the front line. Although as a retired public health scientist I was aware that the disease was spreading, neither I, nor any of the professional colleagues I talked to in Cambridge or Edinburgh, saw anything untoward coming down the track. We were of course all using our taken-for-granted routine ways of dealing with life, and I for one assumed that the pandemic preparedness of the nation would stand us in good stead. I thought the UK authorities had things comfort ably in hand and even reassured several friends of this.

The expectation of a global pandemic had been anticipated for many decades, and the UK government had in place a system of pandemic preparedness. The idea of the possible threat was well known to public health specialists and medical practitioners, some officials, and some politicians. However, until early 2020, the UK public at large did not seem to be much concerned about the distant pos sibility of a pandemic. A critical weakness in the UK was that the planning and preparedness had been done on the basis of an expected epidemic of influenza, not a novel coronavirus, the pattern of transmission of which was dissimilar to influenza (Pegg, Booth, and Conn 2020). Surprisingly to me, there were other weaknesses in preparedness that were already well-known in government, fol lowing a simulation exercise in 2016, code-named Exercise Cygnus (Guardian 2020) Those weaknesses do not appear to have been acted upon, nor was the idea of a “black swan” disease—a non-influenza pandemic (Taleb 2007). Indeed, the Chief Medical Officer at the time of Cygnus has said that she had been re assured in 2015 by Public Health England that a SARS-type pandemic (SARS is a coronavirus) would never travel from the Far East to the shores of the UK (Gardner 2020).

However, by the beginning of March the public was noticing the potential danger. Many clubs, societies, and organizations began voluntarily to suspend events, gatherings, and meetings. Meanwhile, the UK government only empha sized protective measures like hand washing, and some forms of social distancing.

Then on March 23, 2020, following several days of increasingly alarming figures, Prime Minister Boris Johnson announced in a dramatic broadcast to the nation a lockdown for the whole country (Daily Telegraph 2020a). This was accompanied by a raft of highly threatening information about the number of cases, the prob able number of deaths, and warnings to look out for the symptoms (although at that time the symptoms of loss of taste and smell were not included in the list).

Claims were made early on in the daily government briefings that the gov ernment would follow the science, and on one occasion the Chief Scientific Advisor noted that they would follow the behavioral science too (Daily Telegraph 2020b). In this endeavor, a special committee called SAGE (the Scientific Advi sory Group for Emergencies), consisting of scientific experts and others, existed to review evidence as far as it was available and to make recommendations to government in the handing of the emergency (UK Government 2020). SAGE consults with a number of expert groups, including one on modelling and one on behavioral science, respectively the Scientific Pandemic Influenza Group on Modelling (SPI-M) and the Independent Scientific Pandemic Group on Behav iors (SPI-B). In the early phases, according to the public record, one particularly influential series of papers produced was from the Medical Research Council Centre for Global Infectious Disease Analysis at Imperial College, London (ICL 2020). These modelling papers covered a range of topics, focusing initially on what was happening in China, and subsequently on estimates of what was going to happen in the UK. The results were not encouraging. These early predictions

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People with preexisting serious medical conditions were instructed to socially isolate and shield. The dangers of the disease were publicized widely. People were advised to stay away from hospitals, and many were sufficiently alarmed at the prospect of hospitals being major foci of infection that they voluntarily did so. A total lockdown had been put in place. Ordinary life was effectively closed down.What followed was a most remarkable example of behavior change on a mass scale. The UK population did as it was told. “Stay home, protect the NHS,” the slogan went; and they did. Each day a solemn televised briefing was held live from Downing Street, during which the Prime Minister or other senior Cabinet Minister, flanked by the Chief Medical Officer and the Chief Scientific Advisor or other officials, would intone dramatic statistics about the actual and likely fur ther death toll and the dangers facing the whole country. The messaging was clear and simple. There is a deadly disease which is likely to overwhelm the NHS, and all you as citizens can do is stay home and avoid contact with everyone else. The television, radio, and newspapers carried similarly dire warnings.

Michael P. Kelly 324 Perspectives in Biology and Medicine from the Imperial College Group appear to have been very influential in shaping the UK Government’s response (Ferguson et al. 2020).

There has been much discussion since about the modelling and the possible errors in it, and about how other kinds of public health advice from practitioners and from local Medical Officers was ignored in favor of the models (Horton 2020; Scally, Jacobson, and Kamran 2020). The ideas in the models appear to have held sway politically and to have been the core rationale behind the gov ernment messaging. Whether in the corridors of power this was really the case, I don’t know: the political and scientific diarists have yet to tell us their back ground stories, and in due course there may be a public enquiry. However, from an external perspective, it seems highly likely that the worst-case scenario as predicted by the Imperial College models were the ones drawn upon initially to justify the draconian rules. These rules are interesting because they struck at the very heart of ordinary everyday routines, of taken-for-granted ways of thinking and acting. The stark warnings about death played on people’s most elemental ontological fears. At first, the numbers of deaths in the UK were low, and the British media carried daily reports of the way that health services in northern Italy were collapsing under the weight of cases. However, the numbers of people dying each day in the UK be gan to rise, and the reality of the threat gradually crystalized. Reports emerged of doctors, nurses, and other health-care workers who had died in the line of duty. There may have been some, like myself, who noticed that in these early days al most all of the health workers who died seemed to be from Black and ethnic mi nority backgrounds, including senior hospital doctors. There was also the strong suggestion that certain preexisting conditions, like obesity and diabetes, made people more vulnerable. The idea that there was an interaction between infec tion and certain noncommunicable diseases, which are themselves concentrated in socioeconomically and ethnically disadvantaged groups, was abroad—though the implications were perhaps not immediately recognized. Those of us with backgrounds in public health could not easily find out in the early days—globally or nationally—what the breakdown of infections and deaths by age, social class, or ethnicity actually were (Bhopal 2020). Nevertheless, the reality of increasingly large numbers of people dying, including health-care workers, reinforced the government stricture to stay safe by staying home.

Simple everyday activities suddenly became transformed into terrifying vectors of infections—talking to someone, socializing in family groups, having a coffee or a beer in a cafe or pub, or walking close to someone in the street. At a micro level, the very basics of human movement, deportment, and conversation were transformed. Some things were proscribed completely. So, even if you had want ed to, you couldn’t have gone to a pub or restaurant or cafe, because they were all closed. The issue here is not just that ordinary routine interaction in these set tings couldn’t happen because they were closed, but the routine social practices

Ontological Uncertainty and Ontological Threat 325summer 2021 • volume 64, number 3 of large swathes of people’s time were simply cut off, as was their income wholly or in Thispart.was especially true in respect of work and education. A person’s work or student role is a central and core part of their substantial self and consumes a significant part of the day. It is also a platform for interactions with other peo ple, whether workmates, school and college friends, customers, or clients. These highly significant aspects of substantial self were, for many, just stopped. People going to work, school, or college mostly have to travel there. That ended too. Many people take some kind of break during working hours for coffee or lunch, and to go out and buy some refreshments. That halted as well. Heading to the pub or wine bar on the way home was also a normal activity for many; it abruptly ended. All this social contact ceased. So for schoolchildren, students, and many workers (save those in jobs like delivery drivers, care workers, health-care staff, and what were defined as other key workers), the routine social practices that made up their working day became disconnected and attenuated. Primary social attachments were significantly reduced, and the opportunities for presentation of self were suddenly greatly diminished. It is through those social attachments that our presentation of self is acknowledged and reflected back to us, which allows our public social identity to be constructed. So when the arena where our hu manity is confirmed was not just diminished but forcibly atrophied, our sense of future security and safety was challenged, our sense of who and what we are was thrown into doubt, and the ability for others to acknowledge who and what we are was cut off (Kelly et al. 2021). This was problematic for very many people, but perhaps in different ways. Where material deprivation was not an issue, but where the performance of pro fessional and sociable roles was no longer public, the closing off of opportunities was keenly felt but could be replaced quite swiftly by the use of computer plat forms of various kinds. However, for those where the material basis of day-today life was more tenuous, the social closure had immediate consequences, both financially and also for the presentation and acknowledgment of self and there fore potentially for mental wellbeing. The tenuousness of many people’s material lives—that part of the population Savage (2015) called the “precariat”—was laid bare very swiftly. Although ontological security and insecurity are intrinsic to the human condition, breaking people’s ability to “just about manage,” to use the words of Theresa May, the former Prime Minister, happened for some people very quickly indeed. You don’t need to be a psychiatrist to see the potential dangers to psychological wellbeing of this rapid diminution of human association for everyone, and the double whammy of this when coupled with the reduction in the basic necessities of life for some. And bear in mind much of this originat ed with the authorities purposively framing highly threatening and frightening messages and statistics, and with the deliberate closure of large swathes of some industries. With the best of intentions, but with the potential for considerable potential collateral mental health and economic damage!

The issue here is not that a completely new world had come into existence so much as a familiar world—while clearly still in plain sight—was out of reach. It was as if the taken-for-granted routine assumptions of everyday life had been pushed to one side. The competencies with which people used to do the things they needed to do were rendered wholly or partially redundant. New compe tencies had to be acquired, like doing online supermarket shopping and using various online communication platforms. Although few of these things were, or

Michael P. Kelly 326 Perspectives in Biology and Medicine

So the country was in a state of suspended animation. For many, online shop ping and deliveries became the norm. Little road traffic was moving, rail services were cut back to a minimum. People stopped socializing. Normal life came to a near standstill. The infrastructures supporting work and travel were made idle.

Supply chains, for a while at least, were disrupted as goods normally available in supermarkets and grocery shops disappeared from the shelves as panic buying ensued. Flour, toilet tissue, and sanitizer were among items that suddenly became hard to buy. In some occupations, mostly middle-class ones, working from home was en couraged. Through the internet and various platforms like Zoom, Skype, and Teams, work was possible. While many tasks, meetings, preparation of reports and papers can be done in this way, in spite of connectivity, the actuality of the warmth of human contact was missing. However, salaries continued to be paid. On the other hand, for people who worked in retail, services, travel, the arts, construction, factories, and hospitality—a very large part of the economy—there was no work to do. For elderly people living in isolation, whose primary social contacts may have already been tenuous, and for those with serious underlying medical conditions, the problems were particularly acute. They were instructed to shield at home and not go out at all. They became, if they were not already, completely reliant on others, and it was soon clear that the infrastructure of state and voluntary help was not universally effective. The loneliness and social isola tion descended like a mist on the lives of many. These were unusual, not to say unique, circumstances. Social practices and their predictable, repetitive, recursive, and well-understood nature are the bed rock of ontological security for self (Shove, Pantzar, and Watson 2012). New meanings had to be found, and while some people adapted by using their skills in novel ways, for many this simply was not possible. The meanings attached to lots of everyday activities had to change profoundly—for example, socializing ceased to be a pleasant way of affirming human contact, affection, solidarity, and instead became a potential deadly vector of infection. Taken-for-granted assumptions shifted from being automatic background to everyday routines, to things that had to be thought about anew, and indeed rethought and to some extent worked out from first principles. For example, many parents found themselves at home all day with their children, having been made responsible for home schooling. They could not go and visit grandparents, or their friends or their children’s friends.

Ontological Uncertainty and Ontological Threat 327summer 2021 • volume 64, number 3 are, individually insuperable, it was perhaps the fact that so many new things had to be acquired so quickly that made it feel so different. It was also the case that for those families and household units where there were barriers such as access to money, digital technologies, credit, and social space inside the home, the prob lems were much more acute and the longer-term future much more uncertain.

Another very noticeable development as time went by was the tendency of Ministers and some public health officials to switch to a language of punish ment-centered enforcement. New laws were enacted, novel offences created, powers given to the police to enforce these with threats of fines and even impris onment. The language and the narrative were no longer of voluntary compliance in a self-regulating, self-policing society, but of increasing observation and inter ference in the private sphere of people’s lives. Who was visiting whom? Which households were socializing in their homes in an illegal way, and so on? These became matters of legitimate interest for the state, which even seemed to encour age ordinary citizens to be its eyes and ears in this endeavor and to report their neighbors’ transgressions. In Scotland, what kind of sexual coupling was permis sible with whom and where came into the orbit of legitimate state concern. It was all, of course, done in the name of protecting the public and the NHS, and most people probably went along with it with good grace, on the assumption that these were temporary measures which were designed to help. However, there was also a noticeable—and in my view very unwelcome—tendency for all sorts of petty officialdom to begin to appear: people with newly found authority began telling others what they must and must not do. This became even more marked as the various restrictions were slowly lifted after the first lockdown, and more social and economic activity got back underway. Gradually the case numbers declined. There has been much discussion about the accuracy of the data, but the hardest end-point commonly used in the me dia—the number of daily deaths—began to fall. The impression, prompted by government ministers, was that the measures that they had put in place were causal and had worked. We were supposedly past the worst of it. It remains to be seen whether the relationships were causal or associational, and if associa tional or causal, what the mechanism were that worked (Parkkinen et al. 2018).

Knowing the mechanisms will provide a better platform for interventions for the future, but I am personally very concerned that it is not obvious that the hard empirical investigations of the mechanisms involved in both transmission and prevention are being undertaken (Aronson et al. 2020; Horton 2020). For the time being, therefore, causality or association remains scientifically uncertain. I would, however, hazard a guess that, as the restrictions were lifted, the idea that they had worked provided comfort to many, and not just ministers. The public were thanked for their sacrifices, a return to life pre-COVID beckoned, and the country seemed to breathe a collective sigh of relief.

holidays.AsIprepared

In mid-July 2020, the Prime Minister appeared on television to tell the British public that it was time to start to return to work. Plans had already been put in place for schools to reopen before the summer holidays, which in England come in mid-July. The idea was that where people could return to their places of work, they should do so. This was a revealing moment. Quite how this was supposed to happen was not clear: the Prime Minister and his advisors seemed to have as sumed that a swift return to life as it had been would be welcomed by the general public, and that there would be a rapid return to normal. Plans were in place for opening, in a limited way, other parts of the economy. However, not only did comedians and commentators on social media have enormous fun at the Prime Minister’s expense because the messaging was so ambiguous, but the public were unmoved. Within a very short while, it became clear that people’s appetite for going back to normal and going out and about was lukewarm. The public exhibited very high degrees of caution and reluctance to follow the government’s new advice, at least at first. Focus groups conducted by the National Institute for Health Research Policy Research Unit showed that the population had bought into the messaging about staying safe, and that they were for the most part quite risk-averse (Lecouturier et al. 2021). The conven tional psychological and communications wisdom is that fear messages are not an effective way to get people to change their behavior (Peters, Ruiter, and Kok 2013). In the event, compliance levels appear to have been very high, and the messaging about staying safe and the dangers to self, others, and the NHS had been internalized by many in the population. Over the next weeks and months, as aspects of life were opened up, more people gradually started to go out again. But things were different. Something as simple as going into a pub became much more effortful, requiring, very often, booking in advance, having one’s tempera ture taken, giving contact details, and then sitting down at a table screened off from others. The same was true of restaurants and cafes. Casual sociability be came much less casual. Shopping was accompanied by the need to queue; gyms remained closed. In the event, schools did not reopen until after the summer this manuscript, the data once again were showing that the number of people testing positive was increasing, and so too the number of daily admissions to hospital and the total mortality. Once more, the predictions were dire, and new restrictions were being imposed on different parts of the country. More tests were being conducted, although the system of testing and contact tracing had been mired in controversy, especially in England, and appears to con tinue to function sub-optimally. The Prime Minister and the Secretary of State for Health, Matt Hancock, have tried to present themselves as on top of events, though even among their own backbenchers and newspapers normally solid in their support for the Conservative Party, enthusiasm seems to be draining away.

Between the Spikes in the Epidemic

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1And this is indeed what happened. Although it had been hoped that restrictions would be lifted in time for the Christmas and New Year holiday, in the event a complete lockdown was imposed from December 26, and most people’s Christmas plans were completely disrupted. Once again the majority of the population seemed to accept this with good grace.

In October 2020, it seemed possible that in due course a national lockdown would once again be put in place.1 It was far from obvious how the population would respond and whether the messaging would focus on the threats of illness to life or threats of retribution if people did not comply with regulations. The population has settled into a way of living with the new arrangements and even the constantly changing rules and requirements. Previous social practices have been adapted, and new ones adopted. Nothing in life is absolutely predictable, as the saying goes, except death and taxes. But humans are very good at living with ordinary uncertainties and devising psychological and social strategies to adjust. By the time the end of the initial lockdown happened, many people probably saw the world as one that was a bit different, but which could be managed. How ever, the new infections, the new regulations and laws, the continuing apparent vacillation of governments, especially in England, have created an environment which is more uncertain for many and very uncertain for some. An environment has emerged where old skills and competencies, meanings and infrastructures

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This has not been helped by a number of major foul-ups in normally well-func tioning public services, such as school and university entrance examinations for 16- and 18-year-olds. Perhaps most damning was the story of care homes. It emerged that near the beginning of the first lockdown, in order to free up beds in NHS hospitals, many elderly patients had been discharged from the hospitals into care homes without having been tested for COVID-19. There was a very high level of spread of the virus in these environments, with corresponding very high mortality. Some parts of the public service have become surrounded by a narra tive of muddle and incompetence, which in turn seems to emanate from the top of government. I say “surrounded by a narrative” because, although the apparent incompetence is widely reported in the media, many public organizations, for the present at least, do actually seem to be functioning reasonably well.

So what about ontological security? As the weeks have gone by, the efforts to undermine ontological security, which were central at the beginning of lock down, have given way to much more heterogeneous messaging. As I noted above, the initial messaging was effective, in that large numbers of the public complied with the restrictions imposed on them. The messaging has changed many times subsequently, as have the regulations and rules, and with an increasing number of localized restrictions rather than national ones. With the four home nations of the UK pursuing slightly different regulatory approaches, this appears to have created a climate of ambiguity, and one where it is probably more appropriate to talk about ontological uncertainty rather than its complete undermining—for many people, but not all.

In early October 2020 I received a text message from the Scottish NHS Test and Protect system telling me that I had been in close contact in the past week with someone who has tested positive for COVID-19. I was told to socially iso late for the next 10 days. As I sat typing this, wearing a mask and looking around at the four walls of my study, I thought of all the many ways my wife and I would need to adjust once more. Social isolation would prove to be a very personal illustration of the way micro social practices in my home would have to change. But there were no financial implications and I did not develop symptoms. It was an inconvenience, that’s all. But what of those many people for whom the life changes are highly significant?

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Perspectives in Biology and Medicine have had to evolve. As ever, humans incorporate these new things into routine everyday life as best they can. But what is clearer now is that there are, and have been, considerable differences in different sections of the community. The less well-off, the elderly, and ethnic minorities have fared much worse.

It has been frequently suggested throughout the pandemic that the cost in terms of otherwise healthy peoples’ mental wellbeing has been considerable, and things have been made much worse for those with preexisting mental health conditions. One part of that effect on mental health is the continuing ontologi cal uncertainty created by the disease itself and by the government responses to it. However, it is deeper than that. Normally stable liberal democracies like the UK have, for individual citizens, a relatively constant normal degree of certainty about how society operates. We grumble about politicians, but mostly things seem to roll on in a reasonably predictable way. There are also uncertainties that are just a normal part of life, both personally and collectively. However, because of the inherent adaptability of people, the majority routinely cope with the hassles of everyday life. But add together COVID-19 and the possible very long-term nature of the presence of the disease, the correspondingly rather great er degrees of uncertainty that this creates, and the economic crises of unemploy ment and job loss that the shutdown of the economy has engendered, and the future looks bleak indeed. The loss associated with redundancy is nearly always a major stimulus to ontological doubt, uncertainty, and threat. It is not a happy picture. Furthermore, of course, all of this happened in a society already deeply divided over Brexit. The routine practices of everyday life, and the habitual ways in which we cope with the varying degrees of uncertainty, are not only partly in disarray but so are the deeper bases of UK society. The nature of broader social and economic changes following in the wake of the epidemic are likely to be as hazardous as the virus itself. Reflections The ideas that have informed my thinking about the experience of the COVID-19 pandemic in Great Britain—ontological security, agency and structure, self, the

fragile nature of social life, social disruption and social dislocation, and inequali ties in health—reflect my own interests as a sociologist and public health scientist. My working hypothesis is that ontological security in an advanced Western soci ety like the UK for most of the population, most of the time, is simply taken for granted. The appearance of the pandemic, the apparent inability of the authorities to deal with it, the transformations to routine everyday life, have the potential to shake for some, and to undermine for others, their ontological security. The messaging used by government, particularly its messaging about death rates and especially projected death rates, at the very least would have reinforced, as it was intended to, the real dangers facing the population. But the threat was from the messages as well as the virus.

Michel Foucault (1973), writing about the epidemics in France in the 17th and 18th centuries, had some pointed observations of relevance for the current situ ation. He noted that the causal mechanisms leading to epidemics were not well understood then. Control of epidemics was through policing, in order to deal with the disposal of corpses, to control the sale of food, and to prohibit unhealthy housing. Messages were delivered to the public from the pulpit at Sunday Mass. Health inspectors were sent out. These were, he argues, political acts designed for social control, and they had major disruptive effects on the economy as well as leading to schisms and conflicts within parts of the medical establishment about control of the knowledge base.

Foucault’s account of the interesting combination of social control and con trol of the narrative by the consolidation of state power is eerily like current circumstances. The cause of the current epidemic is known to be a virus. But the manner of its transmission through human interactions and the degrees of risk to particular sectors of the population and in particular places is, in my view, not yet properly or mechanistically understood. There has also been a growing struggle

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Although we do not as yet have definitive data, my guess is that the conse quences of this pandemic will prove to be differential. Those with resources— economic, physical, psychological, and social, and who were otherwise already in reasonably good health—will be able to restore equilibrium relatively quick ly. But where such protective resources are in short supply, the ability to keep control of everyday life will be that much more difficult. While these outcomes will not be strictly deterministic or linear, given everything else we know about health inequalities, the mental and physical health outcomes are likely to be much worse for the already relatively disadvantaged. Messaging from government did fluctuate, with bursts of optimism, interspersed with dire warnings. Optimism was linked to the idea that the pandemic would soon be over, the promise of a return to pre-COVID normality. The population has adapted, but it may be less well inclined toward the government now than at the beginning. This does not amount to a coherent theory, but the theoretical ideas I have drawn upon cer tainly help me, at least, make some sense of what has happened.

The implications of both Horton and Bambra and colleagues’ observations are that COVID-19 infection and social position (including ethnicity, age, class, and place—where noncommunicable diseases are most prevalent), are producing a mixed method of transmission that involves the interaction of biological and social phenomena. Social is not mere background or context; it is part of the dynamic process of infection, vulnerability, and prognosis. That the routines are everyday life are disrupted is common to everybody, but the consequences will be highly variable depending on social position and especially social disadvantage. Further, the undermining of everyday routines along with the new routines that

for control of the narrative within the medical establishment (Great Barrington Declaration 2020). The state is exercising increasing control over the population, just as in France in the 18th century, in the absence of any other proven medical strategy. Unfortunately, the strategy has not so far delivered a complete eradica tion of the virus, which the Prime Minister and the First Minister in Scotland both promised. Now, with rising infections, the same strategy about controlling the virus, which was at best only partly successful, is being reapplied. The public is pretty well aware of the uncertainties and the desperation in ministerial state ments, so it remains to be seen how long the state will be able to hold the line.

Richard Horton (2020), writing in the Lancet, captures the point nicely: We have viewed the cause of this crisis as an infectious disease. All of our inter ventions have focused on cutting lines of viral transmission, thereby controlling the spread of the pathogen. The “science” that has guided governments has been driven mostly by epidemic modellers and infectious disease specialists, who understandably frame the present health emergency in centuries-old terms of plague. But what we have learned so far tells us that the story of COVID-19 is not so simple. Two categories of disease are interacting within specific pop ulations—infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and an array of non-communicable diseases (NCDs). These conditions are clustering within social groups according to patterns of inequal ity deeply embedded in our societies. The aggregation of these diseases on a background of social and economic disparity exacerbates the adverse effects of each separate disease. COVID-19 is not a pandemic. It is a syndemic [emphasis added]. The syndemic nature of the threat we face means that a more nuanced approach is needed if we are to protect the health of our communities.

There has already been considerable pushback in some quarters to the imposition of new However,restrictions.thetroubling variations by socioeconomic position in rates of death and the consequences of the disruptions to everyday life, and the resources avail able to deal with, them remain. An argument has emerged that simply treating COVID-19 as an infectious disease, which has been pretty much the response in the UK and worldwide, is to misunderstand what is going on (Bambra et al. 2020).

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Ontological Uncertainty and Ontological Threat 2021 • volume 64, number 3 replace them are potentially much more toxic for some than for others. So, for some, ontological uncertainty may be the new normal; for others, whose starting social position was one of disadvantage and for whom the prevalence of noncom municable disease was already much higher than other sectors of society, the re sult is likely to be real ontological threat. This is real, and it has real consequences manifested in rates of mortality.

Postscript January 2021

It is now early January 2021, and I am making the final revisions to this article following the comments from the reviewer. I myself never developed symptoms, and up to now I have no idea whether I was never infected or was asymptomatic.

Rereading my original draft, it is salutary to note how tricky, and perhaps un wise, it is to write about events as they are happening. As events move on, one’s perception and judgment of them changes. I have decided to take note of the reviewer’s comments, but not to revise the manuscript to update it in the light of how I see things now. I have left it as a record of the way I saw things in October 2020. I have not changed my mind greatly, but I want to add a gloss to a number of the points I initially made. Ontological security helps illuminate some of what has happened, but it is a bigger story than that.

By January 2021, the UK was back in a total lockdown, more or less, and case numbers were rising dramatically. On January 8, 2021, there were over 1,300 deaths, and more people in hospital with COVID-19 than at the height of the first wave of infection in April 2020. My sense is that the population was doing its best to get on with it. The ontological threats were as real as ever and, if any thing, more acute. But perhaps we were all just getting used to it and no longer so horrified by the awful daily death toll. There is a kind of fatigue. The UK government appears to vacillate, and to have acted very slowly. It has attracted a very large amount of criticism. The devolved administrations seem to have acted more quickly, but overall mortality in Scotland, Northern Ireland, and Wales did not obviously suggest that their governmental strategies were more successful. But of course, we need a longer-term view on this. The medical profession seems to be more vociferous than ever, with the speciality societies taking to print and the airwaves, mostly in ways that reinforce the nature of the existential threats facing the country. And there remain dissenting medical voices, especially on socialThemedia.biggest change since October is that two vaccines are now being adminis tered in the UK, and there are plans in place to get those most at risk vaccinated first, followed by the whole population. This will be a huge logistical task, and one on which much depends. I hope that it is successful, but in the last nearly 12 months almost all of the aspirations of government have fallen miserably short when it came to delivery. So we can at this stage only hope that in the case of

Michael P. Kelly 334 Perspectives in Biology and Medicine

There is now a surge in new cases in the UK, said to be powered by a new variant, a mutation of the virus, which is more transmissible. I wonder if the enhanced transmissibility will simply wreak further havoc in the communities already most at risk and will drive up mortality there still further, or whether it will affect the incidence in a more even way across the population.

I have also begun to reflect on timescales. When the pandemic arrived, the public discourse was that it would likely be difficult, but that it was something we would get through, and get through pretty quickly—by the summer, then by the autumn, then by Christmas, and now by next summer (2021)! Because of the mutations, restrictions are finally being imposed on air travelers arriving into the UK from overseas. Although the timeline has been repeatedly pushed back, and the latest lockdown is scheduled to end more than 12 months after the first one was imposed, the underlying idea is still that we will come out the other side, and that in some sense the present privations, difficulties, and inconveniences will be behind us. Ontological security will be restored. Historically, the evidence doesn’t support this idea (Szreter 2021). When you look at the measures taken against bubonic plague in Europe from the 14th century on, the restrictions, quarantines, and isolations were in place for years, not months. At the heart of that historical strategy was the closure of borders. The infectious epidemics in the 19th century, such as cholera, did seem to run their courses more quickly, but only to return again in ways the Victorians and European jurisdictions found hard to fathom (Coleman 1982; Hamlin 2009). Perhaps it would all have been better if that historical understanding had been applied early on, and we had pre

vaccines, things work better. One ray of hope is that the government plans to deploy the military to help with the rollout, rather than relying on their so far preferred solution of outsourcing to private sector contractors. Let us hope that administrative shortcomings do not add to ontological uncertainty.

The syndemic question, with which I ended the original piece, appears to me a very promising line of enquiry. The interaction between the virus, preceding conditions like coronary heart disease, type 2 diabetes, and obesity (and their as sociated concentration in particular population and ethnic groups), I suspect, may prove to be very important when we come to look back at what has happened. I have to admit that I was quite surprised to learn, after I wrote the original piece, that this syndemic link in the case of coronavirus had already been described in the literature, following the outbreak of SARS in 2003. And this description is not in an obscure blog, but in a textbook! Further, the original papers that Singer (2009) draws upon in the textbook are all in mainstream peer-reviewed journals (Chan et al. 2003; Chen-Yu et al. 2005; Leung et al. 2004; Wong et al. 2003; Yang et al. 2006). Perhaps others were very well aware of the connection, but as far as I can tell, this clue in the evidence base was never pressed into service relating to the kinds of preventive interventions which might have helped in the communities where the disease has taken such a great toll.

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Ontological and Threat 2021 • volume 64, number 3 pared for a long haul, with closed borders, rather than the anticipation of a blip, and a return to the normality of the “sunny uplands” promised so often by the UK Prime Minister. Dealing with a long-term chronic problem requires very different skills and has very different consequences for ontological security than managing an acute problem, where the return to normality and a premorbid state is just around the corner. Such a realization might also have led to very different economic and educational responses. You can’t shut down an economy and take children out of school for years. You can’t run a health system in crisis mode for a similar amount of time. On reflection, though, it never occurred to me when I first heard of the outbreak in Wuhan just over a year ago that a very different response should probably have been planned for.

Sociologically, if I was starting this piece from scratch now, I think I might not have focused on ontological insecurity, but on biographical disruption (Bury 1982). This concept was generated in the study of chronic illness. It suggests that the key problem for someone who develops a long-term chronic condition is the way in which future personal biography has to be realigned with the uncer tainties contingent on the realities of the disease, and a painful acknowledgment that a return to the premorbid state is not possible. The work on biographical disruption in chronic illness recounts individual illness experience. In the case of a pandemic, it is perhaps our collective biographies as families, neighborhoods, communities, nations, and as a human race that are in the process of having been disrupted and now need to be reconstructed. References Aronson, J. K., et al. 2020. “The Use of Mechanistic Reasoning in Assessing Coronavirus Interventions.” J Eval Clin Pract 27 (3): 684–93. DOI: 10.1111/jep.13438. Bambra C., et al. 2020. “The COVID-19 Pandemic and Health Inequalities.” J Epidemiol Community Health. DOI: 10.1136/jech-2020-214401. Bhopal, R. 2020. “COVID-19 Worldwide: We Need Precise Data by Age Group and Sex Urgently.” BMJ 369: m1366. DOI: 10.1136/bmj.m1366. Bourdieu, P. 1990. The Logic of Practice. Cambridge: Polity. Bourdieu, P. 2000. Pascalian Meditations. Cambridge: Polity. Bury, M. 1982 “Chronic Illness as Biographical Disruption.” Sociol Health Illn 4: 167–82. Chan, J. M.W., et al. 2003. “Short Term Outcomes and Risk Factors for Adverse Clin ical Outcomes in Adults with Severe Acute Respiratory Syndrome.” Thorax 58 (8): Chen-Yu,686–89.C., et al. 2005. “Clinical Features and Outcomes of Severe Acute Respiratory Syndrome and Predictive Factors for Acute Respiratory Distress Syndrome.” J Chin Med Assoc 68 (1): 4–10. Coleman, W. 1982. Death Is a Social Disease: Public Health and Political Economy in Early Industrial France. Madison: University of Wisconsin Press. Daily Telegraph. 2020a. “The End of Freedom.” Daily Telegraph, March 24. thepaperboy.com/uk/the-daily-telegraph/front-pages-today.cfm?frontpage=59625.https://www.

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Foucault,Ferguson,tics/2020/04/26/governments-guided-science-mantra-really-means/.https://www.telegraph.co.uk/poliN.M.,etal.2020.“ImpactofNon-PharmaceuticalInterventions(NPIs)toReduceCOVID-19MortalityandHealthcareDemand.”ImperialCollegeCOVID-19ResponseTeam,March16.https://www.imperial.ac.uk/media/imperial-college/medicine/mrc-gida/2020-03-16-COVID19-Report-9.pdf.M.1973.

The Birth of the Clinic: An Archaeology of Medical Practice. Trans. A.M. Sheridan. London: Tavistock. First published as Naissance de la Clinique (Paris: Presses Universitaires de France). Gardner, B. 2020. “Britain Has Been Found Wanting: The Public Deserves to Know Ev erything.” Daily Telegraph, Nov. 13. Garfinkel,public-deserves-know-everything-dame-sally-davies-uks-coronavirus/.https://www.telegraph.co.uk/news/2020/11/12/H.1967.

Studies in Ethnomethodology. New Jersey: Prentice Hall. Giddens, A. 1971. Capitalism and Modern Social Theory: An Analysis of the Writings of Marx, Durkheim and Max Weber. Cambridge: Cambridge University Press. Giddens, A. 1979. Central Problems in Social Theory: Action, Structure and Contradiction in Social Analysis. Basingstoke: Macmillan. Giddens, A. 1982. Profiles and Critiques in Social Theory. London: Macmillan. Giddens, A. 1991. Modernity and Self-Identity: Self and Society in the Late Modern Age. Ox ford: Polity. Great Barrington Declaration. 2020. https://en.wikipedia.org/wiki/File:Great_Bar Hamlin,rington_Declaration.pdf.C.2009.

Cholera: The Biography. Oxford: Oxford University Press. Horton, R. 2020. “Offline: COVID-19 Is Not a Pandemic.” Lancet 396: 874. Imperial College London (ICL). 2020. “COVID-19 Reports.” MRC Centre for Global Infectious Disease Analysis. Kelly,ease-analysis/COVID-19/COVID-19-reports/.https://www.imperial.ac.uk/mrc-global-infectious-disM.P.2016.“ThePoliticsofBehaviorChange.”In Beyond Behavior Change: Key Issues, Interdisciplinary Approaches and Future Directions, ed. F. Spotswood, 11–26. Bris tol: Policy Press. Kelly, M. P., et al. 2018. “The Brain, Self and Society: A Social-Neuroscience Model of Predictive Processing.” Soc Neurosci 14 (3): 266–76. Kelly, M. P., et al. 2021. “Inequalities in Mental Health: Predictive Processing and Social Life.” Curr Opin Psychiatry 34 (2): 171–76. Lacey, C., M. P. Kelly, and A. Jutel. 2020. “Fighting Words in the Antipodes.” Perspect Biol Med 63 (4): 669–82. Lazarus, R., and S. Folkman. 1984. “Coping and Adaptation.” In Handbook of Behavioral Medicine, ed. W. D. Gentry, 282–325. New York: Guilford. Lecouturier, J., et al. 2021. “Public Understanding of COVID-19 Antibody Testing and Test Results: A Qualitative Study.” Soc Sci Med 273: 113778. Leung, G. M. 2004. “The Epidemiology of Severe Acute Respiratory Syndrome in the 2003 Hong Kong Epidemic: An Analysis of All 1755 Patients.” Ann Intern Med 141 (9): 662–73. Mann, M. 1986. The Source of Social Power: Vol. 1. Cambridge: Cambridge University Press.

Collected Papers. II. Studies in Social Theory. The Hague: Martinus Ni Schutz,jhoff.A. 1967. The Phenomenology of the Social World. Trans G. Walsh and F. Lehnert. New York: North Western University Press. Schutz, A. 1970. On Phenomenology and Social Relations: Selected Writings. Chicago: Uni versity of Chicago Press. Shove, E., M. Pantzar, and M. Watson. 2012. The Dynamics of Social Practice: Everyday Life and How It Changes. London: Sage. Singer, M. 2009. Introduction to Syndemics: A Critical Systems Approach to Public and Com munity Health. San Francisco: Jossey-Bass. Szreter, S. 2021. “The Epidemiologic Transition Turned Upside Down: Britain’s Mor tality History as an Imaginative Resource for Africa.” In Epidemiological Change and Chronic Disease in Sub- Saharan Africa Social and Historical Perspectives, ed. M. Vaughan, K. Adjaye-Gbewonyo, and M. Mika, 39–79. London: UCL Press. Taleb, N. N. 2007. The Black Swan: The Impact of the Highly Improbable. London: Penguin. UK Government. 2020. “Scientific Advisory Group for Emergencies.” Wong,government/organisations/scientific-advisory-group-for-emergencies/about.www.gov.uk/W.W.,etal.2003.“ClinicalCharacteristicsofFatalPatientswithSevereAcuteRespiratorySyndromeinaMedicalCentreinTaipei.”

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J Chin Med Assoc 66 (6) 323–Yang,27. J. K., et al. 2006. “Plasma Glucose Levels and Diabetes Are Independent Predictors for Mortality and Morbidity in Patients with SARS.” Diabet Med 23 (6): 623–28.

Parkkinen, V. P., et al. 2018. Evaluating Evidence of Mechanisms in Medicine: Principles and Procedures. London: Springer. Pegg, D., R. Booth, and D. Conn 2020. “Revealed: The Secret Report That Gave Ministers Warning of Care Home Coronavirus Crisis.” Guardian, May 7. Peters,ministers-warning-of-care-home-coronavirus-crisis.www.theguardian.com/world/2020/may/07/revealed-the-secret-report-that-gave-https://G.J.Y.,R.A.C.Ruiter,andG.Kok.2013.“ThreateningCommunication:ACriticalRe-AnalysisandaRevisedMeta-AnalyticTestofFearAppealTheory.” Health Psychol Rev 7: S8–S31. Savage, M. 2015. Social Class in the Twenty First Century. London: Pelican. Scally, G., B. Jacobson, and A. Kamran. 2020. “The UK’s Public Health Response to COVID-19: Too Little, Too Late, Too Flawed.” BMJ 369: m1932. DOI: 10.1136/ Schutz,bmj.m1932.A.1964.

Julia Schneider

Stories

55-Word

Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 338. © 2021 by Johns Hopkins University Press 338 In Case the Sun Disappears Somewhere outside of Baton Rouge, my cousin is FaceTiming her children goodbye before intubation “just in case.” They press a watercolor sun to the screen to give her good dreams while she sleeps. I think how recklessly hopeful, how gloriously human a thing it is to close one’s eyes and trust the sun to rise.

Julia Schneider holds a Master’s in Literature from University of Texas at Austin and a professional certification in Narrative Medicine from Columbia University. She is the owner/director of NarrativeRx, an online learning community where she teaches deep listening and self-care through literature, philos ophy, and the arts.

Te Herenga Waka—Victoria University of Wellington, New Zealand. Email: annemarie.jutel@vuw.ac.nz. Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 339–351. © 2021 by Johns Hopkins University Press 339 “In This Together” diagnosis and the imaginary nation Annemarie Jutel

ABSTRACT In addition to the visible ways in which people have been united by COVID, there are also hidden structural and rhetorical links enabled by diagnosis. Diagnosis itself places the individual case into a generalized category, uniting the indi vidual with many others so afflicted. In the case of COVID-19, diagnosis also creates new networks and relations by contact tracing. But diagnosis is also a measure of and technique for imaging the nation. Through multiple mechanisms, it constructs unify ing concepts of nation, of citizen, and of class.

Appeals to solidarity have been a rallying cry during the COVID-19 pandem ic. Political leaders and public health officials around the world have used metaphors of togetherness to entreat their citizenry, but also to celebrate their victories. In my home country of New Zealand, we’ve got the “team of five million,” and we’re admonished to “Unite against COVID-19” (Cheng 2020; NZ Government 2020b). In Ireland, citizens are invited to “Stay connected!” (Government of Ireland 2020; see Figure 1); in Canada, they’re asked to “Join the effort” (Government of Canada 2020); and in France, to “Tenir ensemble” (hold together) or “Faire bloc” (hold the line) (Gouvernement Français 2021).

Source: https://www.gov.ie/en/campaigns/together/.

Diagnoses create order. They take the great continuum of function and dys function and break it into manageable chunks, providing us with “mental niches” for combining discrete objects (Zerubavel 1996). It is via this process of diag nostic classification that we make sense of health, illness, and disease. We sort through symptoms and presentations: place them together or apart and decide what needs to be done. One particular combination of symptoms—the runny nose, the hacking cough, and the fever—mean something totally different than the other—say, the same symptoms, with the addition of a positive PCR (poly merase chain reaction) coronavirus test.

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Figure 1

Diagnosis is, after all, a form of classification, putting together a number of dis parate items—or in this case, individuals—which are more like one another than they are like some other set of items or individuals.

The COVID slogan of togetherness from the Irish Government. “Whatever you are going through in isolation, let’s stay connected and make it through, together.”

Annemarie Jutel

In the pages that follow, after a review of how diagnosis enlists the sick person in a collective category, I will show how diagnosis and diagnostic systems bring individuals together, and how they help to create the nation.

Diagnoses are essential for developing evidence to determine the best practice: to decide the most effective treatment, the likely outcomes, the potential com plications. Without diagnostic categories, generalization is not possible; without generalization, science cannot fulfil its roles. Statistical analysis is only possible with categories to represent outcomes and interventions, because we can’t count cases or outcomes if they aren’t in countable form. How one is diagnosed reifies, provides heuristic and didactic structures, determines the treatment protocol, predicts the outcome, and, in the case of COVID-19 (as in the case of any diagnosed ailment) assigns a set of collective expectations which privileges the collective, if not the united.

But this appeal for unity is more than a conscious project of unification, where people recognize their fellow citizens for having experienced the same thing as they and for acting in accord with public health recommendations, it is built into the fabric of diagnosis itself. Diagnosis connects people. It takes a set of symp toms, a history and some lab work—idiosyncratic characteristics of the individual “case”—and slots them into a category of disease to which many others belong.

But it’s more than just “sick,” it’s what kind of sick. The diagnosis provides an explanation for what ails the patient, a prognosis, a therapy, and social status. As Friedson (1972) explained, “Health and illness are not only ‘conditions’ or ‘states’ of the human individual . . . . They are also states evaluated and institutionally recognized in the culture and social structure of societies” (126).

To be given a diagnosis is to be admitted into a community of individuals with legitimate complaints, to be provided access to the “sick role” and its concordant rights and responsibilities (Parsons 1958). Yes, the patient now has “permission” to stay in bed and forgo normal social duties. At the same time, they are expected to assume the “duties” of the sick person: follow medical instruction, commit to cure and to therapy.

To be diagnosed is to “become” and “to have” (Fleischman 1999). Some dis eases are points of identification: one becomes diabetic, hypertensive, schizophren ic. Others are cumbersome and external, an albatross: one has cancer; one suffers from gout, and so on. In any event, to become diagnosed is for the individual case to give way to the collective. Diagnosis is how medicine classifies human ailments which are in its purview. The very fact that diagnosis is a process of classification demonstrates how diag 1By illness, I mean a feeling of dysfunction, in contradistinction to the term disease, which I use to de note a diagnosable ailment, recognized by medicine as having diagnostic status and recognized by the medical institution as being a legitimate ailment with a worthy label.

The process of diagnosis in one in which (usually) an individual feels unwell and decides that their illness is one which is likely to be diagnosable—that is to say, explained by and captured in the medical taxonomy of disease categories.1 Not all cases of illness are thought to be medical by the person who experiences them or by the doctor who ultimately will determine the presence of a diagnosis or not. An upset stomach can just as easily be attributed to your sister’s cooking, a disease of some form or another (to be diagnosed by the doctor), or to fatigue.

From Case to Collective

The bringing of symptoms to the doctor is a request to join a collective: to be part of something bigger. The sick person presents a narrative that links events and creates a logic of disease, as opposed to a logic of, say, poor cooking and fatigue. Starting from this narrative, the doctor elicits further information, orders diagnostic testing, and creates their own logic, their own narrative (see, for ex ample, Balint 1964; Frank 1995; Jutel 2019; Leder 1990). The ultimate aim of this encounter is to label the dysfunction, to diagnose. What Balint emphasized in the 1960s is possibly even more germane today: “the request for a name for the illness, for a diagnosis is the most pressing problem for the patient. It is only in the second instance that the patient asks for therapy . . . finding ‘nothing wrong’ is no answer to the patient’s most burning demand for a demand for a name for his illness” (25, original emphasis).

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One rapturous fan commented: “Dr Sanders—thank you with every fiber of my being—thank you for doing this. People like my daughter and the families need to know we aren’t alone” (“Sarah,” 14 Oct., commenting on Gardener 2019).

Diagnosis and the national interest go hand in hand. The logic behind the earliest medical classification systems, such as John Graunt’s 1662 Natural and Political Observations, was to protect the kingdom. Graunt felt that by identifying and classifying causes of death, the king would become aware of preventable public

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In relation to COVID, the diagnosis (or the risk of the diagnosis) appears to isolate the newly diagnosed patient to social isolation or quarantine: the opposite of togetherness. This is only part of what happens. At the same time that the individual goes into what we called, in New Zealand, a smaller “bubble” (the “Household Group” in Scotland, or the “Rule of 6” in England), the individual also is introduced into a new network, one which explores connections and con tacts, casual and close. As soon as a case is identified, a close analysis of where the person has been, who they have passed in the corridor, who they have embraced, and with whom they ate is triggered. The people thus revealed assume a shared identity, and in solidarity (albeit, usually imposed), they too go into isolation, have a test, become part of the network (Figure 2). So, it’s a situation of being simultaneously to gether and apart. During COVID times, illness is no longer a solitary burden to shoulder, it’s a sign to join the ranks and head to the local testing center. COVID is a national challenge, one which binds individuals to the spirit of the nation.

nosis brings us together. As a classification tool, diagnosis generalizes with all the benefits that this can bring to understanding a particular situation. Classifying is a means of summarizing many cases of disease to organize human illness in meaningful ways. As the introduction to the 1957 edition of the World Health Organization’s International Classification of Diseases (ICD) made clear, statistical classification in general, and the ICD in particular, furnishes “quantitative data that will answer questions about groups of cases” (vii). This means that an individual patient assigned to a diagnostic category can ride on the benefit of the statistical power offered by similar cases. No longer an isolated individual for whom treatment is a best guess affair, the empirical power of previous groups of cases gives a better idea of what therapy is best, what out come is expected. To make such comparisons or assertions requires the capacity to compare; in order to compare, idiosyncrasy must be obfuscated in favor of generalization.Thediagnosis is powerful unifier. By virtue of the label, the patient assumes a collective identity and joins new communities. As an example, the overwhelm ingly successful Netflix series Diagnosis follows the trajectory of people without diagnoses for debilitating conditions, crowd-sourcing candidate diagnoses to help.

Statistics and the Birth of the State

Screen capture from the NZ Tracer App Overview, Ministry of Health NZ.

Centuries later, the rise of the medical classification in the modern era was similarly concerned with the state (Bowker 1996). Classification, and what was to become the classification of diseases as we know it today, was intimately con Figure 2 COVID-19 diagnosis creates new social networks via contact tracing.

Source: https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-resources-and-tools/nz-covid-tracer-app.

Graunt was of the view that the plague was underacknowledged in the Bills of Mortality and surmised that “there were more that died of the plague than were accounted for under that name, as many as one to four.” He proposed that the truth could be discerned by comparing the number that died of other diseases and “in the weeks immediately before the Plague begun and the number reported to have been dead every week, of those diseases and casualties since, and observing that the surplusage that die now above what did then of those diseases, are indeed dead of the Plague, though returned under the notion of those other diseases” (Graunt 1662a, 2). Each of these individuals, by their posthumous classification, became united in a way that changed how Graunt, and subsequently the king, respectively explained and understood the health of the kingdom.

“In This Together” 343summer 2021 • volume 64, number 3

health scourges and “curiosities concerning the waxing and waning of diseases” (Graunt 1662b). In the 17th century, the plague was the dominant infectious disease, however, as Graunt maintained: “A true account of the plague cannot be kept without an account of other diseases.”

Every week, on a Tuesday, an account of every burial was brought to the Parish Clerk by “ancient Matrons sworn to that office” who, upon “touling and ringing of the bells, or the bespeaking of a grave” would go to “the place where the dead corpse lyeth, and upon their own view and others examination, make a judgement by what disease or causality the corpse died” (3).

nected to the need of European states to be able to understand the health of their citizens. Like the Bills of Mortality, the ICD was originally intended as a means of recording causes of death; it rapidly became a way of tracking morbidity and contact with contagious individuals.

Indeed, one might argue that contagion actually created the ICD, or at least the need for its existence. The 1893 conference at which the ICD was con ceived came on the heels of several individual conferences on cholera. The late-19th-century cholera epidemics were often contained by the death of their sufferers, but increasingly modern systems of transport allowed sick people—no tably, pilgrims from Mecca—to act as vectors as they returned home from their pilgrimages, carrying disease still viable enough to spread. In order to monitor the progression of disease, it became important to have a consistent means for naming it (Bowker 1996). A stable diagnostic classification system is actually a prerequisite for a pandemic, since the very notion of pandemic is only possible if states recognize illnesses in the same way, and if the illnesses thus named can spread from one nation to another. Not-So-Banal Nationalism Nations are never natural divisions. Like diagnoses, they are a form of social cate gorization, where historical, cultural, traditional, political, and other forces break the natural continuum into chunks that can be understood, defended, and serve some sort of purpose. As Billig explains in Banal Nationalism (1995), nation-states are created, for the most part, not along natural boundaries, languages, or ethnici ties, but rather by subtle gestures that enable us “to understand the assumptions of the daily news” (15). As Billig goes on to describe, little things create the nation: the use of words like here, us, and them. These words focus the attention on the imaginary thing that “we” are, and which allow “the media of mass communi cation [to bring] the flag across the contemporary hearth” (174). This “national first-person plural” serves as a continuous reminder of the nation-state, no matter which one we/you/they belong to, and diagnosis is one of the tools that serve as “daily, unmindful reminders of the nationhood in the contemporary, established nation-state” (174). Be it influenza, SARS, HIV, or COVID, diagnoses punctuate nationhood when their causative agents disrespect the “invented permanency” of the nation (Billig 1995, 29). As I’ve written previously in the pages of this journal: [viruses] ignore the invisible lines that define national boundaries, terrifying officials and citizens by the way [they slip] through border control: no passport, no visa. The theme of national boundary transgression is embedded in the no tion of pandemic. After all, what is a pandemic but a “an epidemic occurring worldwide, or over a very wide area, crossing international boundaries and usu ally affecting a large number of people” [Nicoll 2011]? (Jutel 2013, 518)

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“In This Together” 345summer 2021 • volume 64, number 3

A rather quaint example of how diagnosis serves as a way of proving one’s affection for “the inventions of their imaginations” (Anderson 2006, 141) is cap tured in a 1916 advertisement for Bovril, a meat extract (Figure 3). Claiming that “It is unpatriotic to be ill in wartime,” the advertisement advocates consuming Bovril to ward off the risk of influenza. In COVID times, we see prompts for national identity in the daily media and in press conferences. Like sporting events, which every week remind us about our victories, our heroes, and our successes (Billig 1995), WHO situation reports provide a kind of score chart, where the numbers of new cases and of deaths, organized by region and by country, allow “us” to see how “we’re” doing compared to the rest of “them.” We may bask in the glory of low case numbers, or wallow in shame at high ones, depending on where we sit in the infectious disease league tables.

These victories (or failures) focus the public regard inward to something which is distinctly ours and most certainly not theirs, continually reinforcing the belief in the existence of a nation. In New Zealand, the sports metaphor—so successful in promoting patriotism—is embedded into the public rhetoric in order to further hone this sense of nation, and to supercharge its imaginary attributes as a collec tive. New Zealanders are part of a “team,” the so-called “team of five million.”

These viral incursions compel the state to respond, to define itself as distinct and unified. While reminders such as the first-person plural may be banal in non-pan demic times, they become not-so-banal in times of viral threat. It is a unification borne of crisis and couched as such in metaphor and in description. The external threat of disease becomes affixed to other nation states. The H5N1 (bird flu) was referred to as being “like enemy troops moving into place for an attack” (Hanne and Hawken 2007, 95), and a favourite metaphor used by UK Ministers during the current COVID pandemic is of the population “being all in it together,” which hearkens to the repeated popular representation of WWII as shared expe rience of the civilian and the military (Lacey, Kelly, and Jutel 2020).

The sporting metaphor provides a sense of comfort to a nation accustomed to rugby as a means of social identity, as well as a collective investment in success (Lacey, Kelly, and Jutel 2020). During lockdown, New Zealand’s Director-Gen eral of Health made extensive use of rugby metaphors during each alert level. He warned citizens not to become complacent, coaching us that “we’re at half time,

Imagining Unity: Who Are “We”? Not “Them”! “We” aren’t really who we think we are, given, as Anderson (2006) has reminded us. Even in the smallest of nations it wouldn’t be possible for anyone to know all of its members. We are compelled to create ideas about who we are, or might be, and to impose those ideas on our sense of nation in what Anderson calls an “imagined” community. Disease and diagnosis play a role in the construction of this imaginary nation.

Annemarie Jutel 346 Perspectives in Biology and Medicine Figure 3 Illness as a flag for nationhood. Source: The Observer, Dec. 16, 1918.

347summer 2021 • volume 64, number 3 but we can’t take our eye off the ball yet,” and he talked about not giving up “before the full-time whistle” and having a “game plan” (Bloomfield 2020; NZ Government 2020a). The “us” and “we” presumes also a “them,” and the unification incurred by diagnosis in relation to the “not us” continues to be an important feature of New Zealand unity. Disgruntled and lockdown-weary citizens in the “team of five million” are quick to look askance at one another. In the early days of strict lockdown, the virtuous and vigilant reported their neighbors for what they per ceived to be transgressions. By March 31, 2020, one week into the level 4 lock down, New Zealanders had reportedly called in over 10,000 reports of lockdown breaches to the police (RNZ 2020); indeed, they were so eager to report that the police website set up for this purpose crashed under the load (Smith 2020).

Also tainted, and adversarial, were Pacific Island neighbors, many of whom are either citizens by birth—if their island is part of the Realm of New Zealand—or by immigration. During the COVID-19 pandemic, travel between these islands and New Zealand was virtually shut down and restricted to repatriating citizens (and permanent residents) to either the islands or to New Zealand.

Typical of many, one contributor to the Ministry of Health’s Facebook page wrote “Let’s be real and remove emotional arguments. Most kiwis out of New Zealand right now made a choice to live elsewhere. . . . Why should this be our issue so far down the path?” (minhealthnz/posts 2020-174094737492652, em phasis added). Another chimed in: “I understand there was a full aircraft land [sic] from China last week not one person on the aircraft could speak English. You have to ask yourself are these people we are letting in really New Zealanders” (minhealthnz/posts 2020-?v=3691920004168655).

“In This Together”

Later in the pandemic, when anxious Aucklanders faced a second lockdown as the result of an unexpected community cluster, othering those who were ill also brought New Zealanders together, albeit acrimoniously.

The question of citizenship is tightly linked, of course, to the question of nation, and particularly in New Zealand, in response to the returning citizen. States, worldwide, cling to an imagined purity, with the borders strengthened to prevent pollution (or in this case, contagion) from the alien “other.” Having an adversary produces class solidarity and imagined fellowships (Anderson 2006).

For the “team of five million,” every potential assault on the disease-free status of their nation assembled (worthy) citizens more tightly. For example, for New Zealanders returning from other nations after the onset of the COVID-19 pan demic, homecoming was harsh (Graham-McLay 2020). Bitter social media and talk-back exchanges revealed New Zealand-based New Zealanders critical of what they saw as tainted citizens. They protested the return of the late returnees: the citizens who, like foreign invaders, could bring the virus back across the na tional boundaries, even if only to a quarantine center.

Annemarie Jutel

The initial flurry of social media responses to this cluster was so divisive as to generate a call from the Minister of Health for New Zealanders to stop spread ing rumors. “Not only was it harmful and dangerous, it was totally and utterly wrong,” said the minister (Coughlan 2020). An early social media post on Face book and Instagram, titled “News Flash,” incorrectly claimed that the cluster had started when a daughter in the family involved where the initial case oc curred—“known to the police”—allegedly visited her supposed Australian-de ported “boyfriend (or associate)” in a border isolation facility. This posting tarred the cluster members as having engaged in illegal activity both by allegedly enter ing a border isolation facility and being connected to someone “deported” from Australia.3 These were “bad” people who had, by virtue of their transgressions, brought disease back into the community (Bonnett 2020; Connor 2020). But the assumption of their badness was not just a matter of infection. They were Pacific Islanders, and the infection was deemed to be confirmation of their deviance. These racist insinuations were yet another form of generalization, both by and of the insulters. Again, following Anderson: “Racism dreams of eternal contam inations, transmitted from the origins of time through and endless sequence of loathsome copulations… the dreams of racism actually have their origin in ideol ogies of class” (149). Class, like diagnosis, is a category, one to which the inciters of the racist invectives assign themselves as they engage in their fictious tirades.

348 Perspectives in Biology and Medicine

While, on the one hand, New Zealanders were disappointed that they could no longer fly to what they considered their tropical playgrounds—and many of the island nations were disappointed in the loss of economic benefit the absence of New Zealand tourists created—an abrupt about-face took place when a new cluster of community COVID-19 infection was identified in a small community of New Zealand-based Pacific Islanders after 102 days without a reported com munityWhilecase.many were hoping at the end of July to hear plans for the relaxation of border restrictions between New Zealand and the Cook Islands, instead they re ceived news of a new cluster that included, ironically, the former Prime Minister of the Cook Islands, Dr. Joe Williams, among those infected.2 This news gave rise to further unification, both within the cluster itself via the contact tracing net work described above, but also by casting the people diagnosed with COVID-19 or identified as close-COVID contacts as adversaries.

2Dr. Williams, known to his community and to this author as “Papa Joe,” would not recover from this infection, and would die on September 4 in an Auckland hospital.

3Australia deports New Zealanders who fail the “character test”; therefore, referring to someone as being deported from Australia implies a flawed and shady individual.

“In This Together” 349summer 2021 • volume 64, number 3

Diagnosis offers a means by which an exercise of patriotism, a devotion to the collective occurs. “Be kind” admonished Jacinda Ardern; “We’ll make it through together” proclaimed the Irish COVID public health campaign. The terms of to getherness as created by the pandemic are terms that may be effective as a public health strategy, but they will require scrutiny once the dust settles. The collective identity may move from a team of five million to a herd, but with camaraderie may come enmity, censure, and reproach.

Source: https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-resources-and-tools/nz-covid-tracer-app.

Togetherness was, and continues to be, visible in the ways in which nations, groups, and individuals approach the COVID-19 pandemic (Figure 4). Diagnosis is a generalizer; it is also a trigger for action. In the individual case, it is via the di agnosis that a treatment and a prognosis are established. In the case of pandemic, diagnosis confirms (or reassigns) boundaries, classes, and networks. It defines and links nations, as well as anchors patriotism.

Togetherness as imagined nation and public health strategy. Screen capture from the NZ Tracer App Overview, Ministry of Health NZ.

Conclusion

But, ultimately, diagnosis also allows implementation of the force of the state, which in turn confirms its existence. Quarantine is mandated on those diagnosed; freedoms are curtailed under the guise of the diagnosis. When, the Prime Min ister of New Zealand stands before the press corps with the Director General of the Ministry of Health at her side, and states that she “will let the Director General start,” as she typically does, she is ceding to the diagnosis count in order to buttress whatever action she will next order. In this context, diagnosis is no longer about the individual, it is about the rights and duties of citizenship, the declaration of patriotism, and governmental power.

Figure 4

Anderson, B. R. 2006. Imagined Communities: Reflections on the Origin and Spread of Nation alism. Rev. ed. New York: Verso. Balint, M. 1964. The Doctor, His Patient and the Illness. Kent: Pitman Medical. Billig, M. 1995. Banal Nationalism. Thousand Oaks, CA: Sage. Bloomfield, A. 2020. The Breakdown. Sky Sport Auckland, May 19. Bonnett, G. 2020. “Family at Centre of Rumours Struggling with Online Abuse.” Radio New Zealand, Aug. 18. Bowker, G. C. 1996. “The History of Information Infrastructures: The Case of the Inter national Classification of Diseases.” Inf Process Manag 32: 49–61. Cheng, D. 2020. “COVID 19 Coronavirus: What Alert Level 3 and Other Levels Mean for You.” NZ Herald, April 16. Connor, F. 2020. “‘No Link’: MBIE Shuts Down Rumour Blaming Auckland’s COVID-19 Outbreak on Girl Breaching Quarantine to Visit Man Deported from Australia.” Newshub, Aug. 15. Coughlan, T. 2020. “Coronavirus: Chris Hipkins and Ashley Bloomfield Slam Spreading of ‘Vile’ Rumours About Latest COVID-19 Cluster.” Stuff, Aug. 16. Fleischman, S. 1999. “I Am . . . , I Have . . . , I Suffer from . . . A Linguist Reflects on the Language of Illness and Disease.” J Med Humanit 20: 1–31. Frank, A. W. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Freidson, E. 1972. Profession of Medicine: A Study of the Sociology of Applied Knowledge. 4th ed. New York: Dodd, Mead. Gardener, A. 2019. “A Times Column, Now Streaming.” NY Times, April 16. Gouvernement Français. 2021. “COVID-19: La résilience des Français à l’honneur dans la campagne #TenirEnsemble.” Gouvernement Français, Aug. 2. Graham-Mclay,GovernmentGovernmentnirensemble.vernement.fr/covid-19-la-resilience-des-francais-a-l-honneur-dans-la-campagne-tehttps://www.gouofCanada.2020.“Coronavirusdisease(COVID-19).”GovernmentofCanada.https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-19.html.ofIreland.2020.“InThisTogether.”IrelandDepartmentofHealth.https://www.gov.ie/en/campaigns/together/.C.2020.“‘StayAwayfromUs’:NewZealandersReturningHometoCOVID‘Lifeboat’FaceBacklash.”

Annemarie Jutel 350 Perspectives in Biology and Medicine References

Guardian, June 25. Graunt, J. 1662a. Natural and Political Observations . . . Made Upon the Bills of Mortality London: John Martyn. Graunt, J. 1662b. Reflections on the Weekly Bills of Mortality for the Cities of London and Westminster and the Places adjacent. London: Samuel Speed. Hanne, M., and S. J. Hawken. 2007. “Metaphors for Illness in Contemporary Media.” Med Humanit 33 (2): 93–99. DOI: 10.1136/jmh.2006.000253. Jutel, A. 2013. “When Pigs Could Fly: Influenza and The Elusive Nature of Diagnosis.” Perspect Biol Med 56 (4): 513–29. DOI: 10.1353/pbm.2013.0033. Jutel, A. 2019. Diagnosis, Truths, and Tales. Toronto: University of Toronto Press.

“Planning for Uncertainty: A European Approach to Informing Re sponses to the Severity of Influenza Epidemics and Pandemics.” Bull WHO 89: 542–Parsons,44. T. 1958. “Definitions of Health and Illness in the Light of American Values and Social Structure.” In Patients, Physicians and Illness: Behavioral Science and Medicine, ed. E. G. Jaco, 120–44. Glencoe, IL: Free Press. Radio New Zealand (RNZ). 2020. “Nearly 10,000 Reports of Suspected Lockdown Breaches Made.” Radio New Zealand, March 31. Smith, A. 2020. “COVID-19: Reports of Isolation Breaches Crash Website.” Radio New Zealand, March 30. World Health Organization (WHO). 1957. Manual of the International Statistical Classifica tion of Diseases, Injuries and Causes of Death. Geneva: WHO. Zerubavel, E. 1996. “Lumping and Splitting: Notes on Social Classification.” Sociol Forum 11: 421–33.

“In This Together” 351summer 2021 • volume 64, number 3 Lacey, C., M. P. Kelly, and A. Jutel. 2020. “Fighting Words in the Antipodes.” Perspect Biol Med 63 (4): 669–82. Leder, D. 1990. “Clinical interpretation: The hermeneutics of medicine.” Theor Med 11: New9-24.Zealand (NZ) Government. 2020a. “COVID-19 Updates.” Beehive.govt.nz. New Zealand (NZ) Government. 2020b. “Unite against COVID-19”. https://covid19. Nicoll,govt.nz/.A.2011.

Stories

R. A. Solomon is an emerging writer based in Wellington, New Zealand, and San Luis Obispo, California. She writes poetry and short stories, and this past year she completed her Master’s degree at Victoria University, where she wrote her first novel-length manuscript. In her spare time, she works as a freelance artist and a game developer.

55-Word

Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 352. © 2021 by Johns Hopkins University Press 352

The Unexpected Perks of Flatting During COVID-19

The world flipped its sign from open to closed. I’m 6,714 miles from home in a place that tastes familiar. At night, I dream about my mother. It goes like this: I, blindfolded, frantic. My mother, always out of reach. When the sun rises, I bake bread and find I have fallen in love. Ruby Solomon

elderhood, race, and biocitizenship in the time of coronavirus

Jennifer Lum

Department of Rhetoric, University of California–Berkeley. Email: jmlum011080@berkeley.edu. Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 353–369. © 2021 by Johns Hopkins University Press 353 Autopsy of the Living

ABSTRACT This article reflects upon a story that Jiayang Fan, a staff writer for the New Yorker, shared during the first days of the coronavirus pandemic lockdown. In spring 2020, Fan pleaded for help to the Twitter community: her mother, a 68-yearold who suffered from amyotrophic lateral sclerosis (ALS), was trapped at the Henry J. Carter Specialty Hospital in New York City, amid a COVID-19 outbreak. Even worse, her mother’s aide, a Fujianese immigrant, had been forcibly evacuated by the hospital’s police due to noncompliance with lockdown orders, and Fan knew that her mother couldn’t survive without her. Using Eric Klinenberg’s concept of the “social autopsy,” this article explores the historical, social, structural, and political underpin nings of Fan’s family’s ordeal and argues that Fan’s story underscores the harmful leg acies of immigration measures and austerity politics unfolding in one of the world’s wealthiest cities. Fan’s turn to social media networks for help reflects a pattern of bio logical citizenship emerging in the COVID-19 era, which has mobilized the disabled, elder care, and racial justice communities in a time of pervasive insecurity. It was the racial slur that caught my attention. All of the familiar sensations awakened: the surge of nausea, the racing heart, the burning ears, the seizure in my throat, and the rage in my stomach. For a second, it transported me back to the overcast February day in elementary school, when two 10-year-old boys named Chad and Brandon approached me outside the school cafeteria and sud

Jennifer Lum 354 Perspectives in Biology and Medicine

On March 28, 2020, Fan pleaded for help from the Twitter community. Fol lowing New York City’s transition to lockdown, she had been barred from vis iting her mother, a 68-year-old woman who suffers from amyotrophic lateral sclerosis (ALS), at the Henry J. Carter Specialty Hospital in Manhattan. Fan was deeply distraught, as her mother was on a ventilator and barely clinging to life, under the care of a rotation of health aides who tended to her 24 hours per day. Even worse, Fan knew that residents in long-term care facilities were especially vulnerable to the coronavirus, and she feared her mother was a sitting duck. Feeling helpless, Fan implored her nearly 60,000 followers on Twitter for dona tions in order to purchase food and supplies for the hospital’s roughly 400 staff members. In early April, Fan learned that some patients at Carter had contracted COVID-19, and she was subsequently told that all visitors would need to leave the building indefinitely. On April 9, Fan tweeted that security staff had seized and expelled her mother’s aide from the hospital, due to noncompliance with lockdown orders. Seemingly miraculously, with the help of two New York state politicians and a prominent Twitter personality, Fan was able to negotiate the aide’s return to her mother’s bedside by the following day.

denly cackled at me in unison, making a slanted eye gesture with their fingers, and mocking a language they presumed I spoke. Or perhaps they didn’t, but it didn’t matter. My Asian features were all that mattered. This time, however, the slur had been directed not at me, but at Jiayang Fan (2020), a staff writer for the New Yorker, who posted on Twitter about the inci dent immediately after it happened. On March 18, 2020, my brother had sent me a screenshot of her tweet. She had been taking the garbage out from her apartment in New York City, when an older white man snarled at her: “F—ing Chinese!” In a moment of confusion, she had stared at the man incredulously, when he doubled down: “Yeah, you, you Chinese b—!”

While following Fan’s story I’ve been left with the haunting impression that Fan’s dogged advocacy has done nothing short of saving her mother’s life. Fan had known that her mother couldn’t survive without her aide’s fine-tuned atten tion to her life-support technologies, her Chinese language skills, and her famil iarity with her mother’s patterns of communication. The pandemic confronted

Not being keen on social media, I normally would have sent my brother a “disgusted” emoji in reply and moved on with my evening. Even so, it had been anything but an ordinary week. Having been abruptly and indefinitely sent home, due to the COVID-19 pandemic, from the classes I had been teaching at UC Berkeley, I’d found myself with more unscheduled time on my hands than I had wanted. I’d pored over several articles documenting a surge in anti-Asian hate crimes stemming from resentment over the coronavirus, not only in the United States, but around the world. Feeling a different kind of vulnerability than I ever had before, I decided to follow Fan on Twitter, at which point she shared a story that has become the point of departure for this essay.

Autopsy of the Living 355summer 2021 • 64, number 3

In what follows, I explore some of the historical, social, and political condi tions that have brought about such precarity in the day-to-day lives of some liv ing in New York City. Turning to Eric Klinenberg’s (2001) notion of the “social autopsy,” I argue that Fan’s family’s story is symptomatic of the fallout from US immigration policies and from austerity measures that have stratified and margin alized communities of color since the 1970s. I go on to suggest that Fan’s strat egies of advocacy for her ALS-stricken mother reflect the history, as well as the emergent directions of health-care activism in the US, in the time of COVID-19.

A History of a Life Near Death

In order to make sense of Fan’s family’s ordeals during lockdown in New York City, it is important to consider Fan and her mother’s life history together. The pair came to the US from Chongqing, China, in 1992. Fan was seven years old at the time. Her mother, Yali Cong, had worked as a physician in the Chinese army. The two had been living on their own in Chongqing since 1986, when Fan’s father departed to study biology at Harvard University. On July 4, 1992, Fan and her mother landed at JFK Airport outside New York City, carrying suit cases stuffed with bedding, cooking items, and a stethoscope. They joined Fan’s father, who by then had been hired at Yale University, in a tiny studio apartment in New Haven. The reunion, however, didn’t last long. Fan’s father deserted the pair for another woman, leaving Fan and her mother alone to face eviction. Cong had $200 to her name, and she spoke little English. As circumstances grew desperate, a friend brought Cong to the local library, where she browsed employment ads and secured a position as a live-in house keeper for a family in nearby Greenwich. At the time, in the mid-1990s, Green wich was one of the wealthiest places in the country, and Cong believed that the local schools would offer Fan a pathway to elite higher education. Cong soon discovered that that her employers’ needs were fickle, and that every few years

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Fan with her mother’s extreme vulnerability, which was punctuated by the vi olence of her mother’s aide’s evacuation by the hospital’s security team. I am also fascinated with the actions Fan took, and particularly her outreach on social media, as her mother’s life hung in the balance. Had the Twitter community not intervened, the outcome of the events might have been much different. These observations have led me to wonder: what have Fan’s family’s trials revealed about the deep fragility of life in the face of the COVID-19, particularly among Asians, working-class laborers, and elderly people in New York City? How might we historicize such glaring vulnerability, and how might we begin to parse the layers of trauma and violence that have unfolded at the Carter Specialty Hospital, which, on its face, is a space of safety and healing? Furthermore, what have Fan’s tactics shown us about the strategies and directions of health-based advocacy and activism in the post-COVID-19 era?

Jennifer Lum 356 Perspectives in Biology and Medicine

she would need to scour the local advertisements once more for jobs close to Fan’s schools. Such perennial anxiety, Fan believes, led her mother to develop a stubborn facial rash, along with a host of other chronic body ailments.

In late March 2020, as New York City unfurled its lockdown policy in re sponse to the coronavirus, Cong had two regular health aides, Ying and Zhou.

Upon learning that Carter planned to ban all visitors, Fan called Zhou and told her to stay home in Queens, two hours away, where she lived with her son’s family and in-laws. She then implored Ying, whose shift was ending, to stay as long as possible with her mother. Barred from visiting her mother, Fan docu mented her predicament on Twitter and called for donations to purchase food for Carter’s employees, in order to support and stay connected to the staff. On April 9, Fan absorbed a double blow: she was briefed about a COVID-19 outbreak at Carter, hours before security guards dragged Ying out of the hospital so abrupt ly that she didn’t have time to put on her shoes. Fan responded by tweeting at Mitchell Katz, the president of New York City Health and Hospitals, and public ly pleading for his help. That night, three people contacted her: Yuh Line-Niou, a New York assemblywoman whose district includes Manhattan’s Chinatown; Brian Benjamin, a state senator whose district includes Harlem, where Carter is located; and a prominent Twitter personality who knew Katz personally and offered to contact him on Fan’s behalf. Early the next morning, Fan received a phone call from David Weinstein, the medical director and head of public rela tions at Carter. To her relief, Weinstein informed her that Ying would be autho rized to return to her mother’s bedside, effective immediately.

In the fall of 2011, at the age of 59, Cong was diagnosed with ALS. Over the next three years, she endured a gauntlet of emergency surgeries, ICU visits, and stints in nursing homes. By 2014, Cong could no longer breathe without a ven tilator and was moved to Henry J. Carter Specialty Hospital, a long-term acute care facility in Manhattan, which is 30 miles from Greenwich. Recognizing that her mother required more assistance than Carter could provide, Fan stayed by her side, turning her every two hours to avoid bedsores, suctioning the mucous from her throat every half-hour, and designing a communication system in which her mother blinked at letters on an alphabet chart. Torn by her work obligations, Fan eventually hired a rotation of Fujianese health-care aides to look after her mother 24 hours per day.

Fan’s family’s story is undeniably one of long-term insecurity, combined with dogged perseverance. Given the severity of Cong’s bout with ALS, as well as her advancing age, it would certainly be possible to read her decline as an inevita ble trajectory toward death, and to interpret the clash with hospital police as an unfortunate byproduct of the fallout from the COVID-19 pandemic. In light of the family’s decades-long and multilayered journey, however, I am interested in exploring some of the historical, social, and structural conditions that brought about such extreme vulnerability.

A Model of Minor(ity) Insecurity

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Although many aspects of Fan’s family’s story are rather poignant, I am especially struck by the bond of mutual reliance that Fan and her mother have shared since their arrival in the US in the early 1990s, as they have managed to survive on modest means while weathering one crisis after another. This bond has likely saved Cong’s life since the onset of ALS symptoms in the early 2010s, and in particularly dramatic fashion amid COVID-19-related lockdown conditions that have taken hold since mid-March 2020. As remarkable as Fan and her mother’s life together has been, their story of immigration, and of scraping by through so cial, financial, and health-related insecurity, is far from uncommon among elderly Asians and their families living in New York City. Since the early 2000s, Asians over the age of 65, like Cong, have represented the fastest-growing population of aging immigrants in New York City, growing by at least 68% between 2000 and 2010. This trend has accelerated since the 1970s, the decade before Fan’s father relocated from Chongqing to Boston. For the past four decades, Asian immigration to the US has outpaced the growth rates among all other ethnic groups (González-Rivera 2013). Within a broader histori cal context, this dramatic increase in Asian immigration to the US stems from the Immigration and Nationality Act (INA) of 1965, which ended northwestern Eu ropean and Germanic bias in immigration policy. By removing race-based quotas restricting newcomers from Southern and Eastern Europe, Africa, and Asia to the US, the INA ushered in a wave of immigrants from mainland China, India, Korea, the Philippines, and Vietnam (Lobo and Salvo 1998). Between 1964 and 1994, the period during which Fan’s family came to the US, legal immigration from Asia rose from 21,000 to 292,000 arrivals per year. By the 2010s, the decade during which Cong developed severe symptoms of ALS, a large percentage of these immigrants, like Cong, had reached the age of 65 or older.

Autopsy of the 3

Eric Klinenberg’s (2001) concept of the “social autopsy” serves as a useful tool for making sense of the trauma Fan’s family has endured. The social autopsy enables a political sociology of death and dying, in order to reveal “a structure of urban marginality and insecurity that is always present but otherwise difficult to perceive” (123). The social autopsy peers beyond the organic profile of the dead or dying body, while turning a critical eye to the intersectional politics of illness and vulnerability within which the body is situated. In what follows, I use the concept of the social autopsy to explore some of the structural pathologies that Cong’s predicament during the COVID-19 pandemic lays bare. I focus on the lingering residue of 20th-century US immigration policies and austerity politics, as well as the uneven geographies of race, opportunity, health, and wealth distri bution that such politics have engendered.

While Cong has survived in the US, and successfully raised Fan on modest means, the pair’s ordeal at Carter Specialty Hospital underscores the lack of re

It is important to point out that this snapshot of poverty and hardship among aging Asian immigrants flies in the face of the “model minority myth,” which has cast Asians as upwardly mobile and socioeconomically advantaged compared to other minority groups in the US, particularly African and Latinx Americans. Asians’ success, the story goes, may be attributed to traditional Confucian beliefs, a culture that fosters a strong individual work ethic and robust family values (Chou and Feagin 2015; Hartlep 2013; Wu 2015). Although a thorough interro gation of the model minority myth is beyond the scope of this paper, it is critical to emphasize that this narrative obscures the politics and ongoing ramifications of the INA. Although the INA increased the overall influx of immigrants to the US, it was structured according to a preference system that favored relatives and children of US citizens and permanent residents, highly skilled professionals, and refugees. Strikingly, between 1971 and 1994, 34.3% of Asian immigrants were classified as highly skilled professionals, compared to 22.7% of immigrants overall (Lobo and Salvo 1998). This policy of “hyper-selectivity” has enabled the earning power of Asian immigrants and has positively influenced the edu cational trajectories and long-term outcomes among subsequent generations of Asian-Americans (Zhou and Lee 2017).

Jennifer Lum 358 Perspectives in Biology and Medicine sources at their disposal to allow Cong to navigate her trials with ALS in the comfort of her own home. Although Cong is able to pay for long-term care at Carter with the help of Medicaid and Medicare, elderly Asian immigrants in New York City are far more likely to fall below the poverty line than are se niors from other ethnic groups. As of 2013, the four fastest-growing groups of immigrant seniors, which included Chinese, Indian, Caribbean, and Koreans, all suffered from poverty rates of at least 25% (González-Rivera 2013). These rates are driven by multiple factors. To begin with, these groups are much less likely than native-born seniors to benefit from substantial Social Security–based income, because they have earned less over the course of their working lives. In addition, people from these immigrant groups are more likely to have suffered from long-term, limited earning power, as well as social isolation, due to their limited English skills. According to a study by the Center for an Urban Future, 94% of elderly Korean immigrants, as well as 92% of elderly Chinese immigrants, like Cong, spoke English “less than very well” (González-Rivera 2013, 7). This combined lack of language skills and earning power, as well as social isolation, has resulted in comparatively high levels of depression and even suicide among older Asian immigrants, according to Jo-Ann Yoo, the managing director of commu nity services at the Asian American Federation in New York City (González-Ri vera 2013). It is within this context, not surprisingly, that Fan has mused that her mother’s chronic physical ailments reflect her stressful life course.

Against this backdrop, Fan’s family’s story illustrates the uneven legacy of the INA and its scattered distribution of privilege and insecurity. On the one hand, Fan and her mother were able to enter the US through the policy of family re

Austerity, COVID-19, and the Politics of Vulnerability

Although the INA increased the flow of immigrants into the US, Fan and her mother arrived in the country in 1992, when austerity politics had already weak ened the US government’s support for new arrivals. Reagan-era tax cuts and disinvestment in the social safety net set the stage for a host of welfare and immi gration reforms in the mid-1990s, right after Fan’s family dissolved. In 1996, Con gress passed the Welfare Reform Act, which reduced federal spending, required

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In this respect, Fan and her mother’s story resonates more closely with the mi gration stories of Southeast Asian refugees who were granted asylum under the INA than it does with the upwardly mobile trajectories of those Asians, like Fan’s father, who benefitted from the immigration system’s practice of hyper-selectivi ty. A larger share of Southeast Asian immigrants, including Cambodian, Laotian, Hmong, and Vietnamese, live in nontraditional family structures compared to other Asian immigrants, due to the deaths of family members amid conditions of wartime and hardships faced at refugee camps (Landale, Thomas, and Van Hook 2011). The combination of single-parent households, as well as relatively low er rates of professional skill and education among Southeast Asian refugees, has resulted in higher rates of poverty in relation to other Asian immigrants and has thrown into relief the socioeconomic disparities among Asians as an ethnic group that the model minority myth obfuscates.

unification, which promised an upwardly mobile lifestyle, driven by Fan’s father’s work, institutional affiliations, and socioeconomic status. On the other hand, the six-year gap (1986–1992) between Fan’s father’s arrival in the US and Fan and her mother’s migration trajectory illustrates the bureaucratic complexities of the US immigration system, which has been designed to cap the influx of migrants from single countries. As of 2011, the average wait time for a spouse or a minor child of a legal permanent resident was six years. More broadly, the system has disproportionately affected those hailing from countries with large numbers of potential migrants, including Mexico, China, India, and the Philippines (Landale, Thomas, and Van Hook 2011). As Fan’s family’s struggles illustrate, this waiting period has often strained migrant families. The reunification process is fraught with insecurity at multiple stages, including high rates of illegal immigration on the part of those who have acquired visas but must wait to enter the US due to the backlog; children who, while waiting, age out of the categories for which they have been approved; and ongoing interpersonal strain, to which Fan’s family can attest, once the families have been reunited after a years-long separation and must negotiate their new lives together.

After Fan’s father deserted the family, Fan and her mother were left to face eviction and ongoing social and financial precarity as a single-parent household.

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The COVID-19 pandemic of 2020 has laid bare the impact of austerity pol itics upon the city’s public infrastructure and the precarious conditions of living that working-class laborers, as well as the elderly, have consequently faced. After losing thousands of hospital jobs during the 1990s, for example, New York City’s public hospital system sustained another round of cuts to jobs, mental health pro grams in schools, pharmacies, and community clinics in 2009 (Hartecollis 2009), two years before Fan’s mother was diagnosed with ALS. The cuts were part of a long-term trend in budget reductions and insurance overhauls, as the city reduced its number of licensed hospital beds from 73,931 in 2000 to 53,000 in 2020 (Campanile et al. 2020). It is within this context that Carter Specialty Hos pital was the only long-term acute care facility that would accept Fan’s mother in 2014, and that Fan needed to stay by her bedside for a lengthy period of time after her admission, due to inadequate staffing.

Although the safety net for immigrants was largely dismantled by Congress in the 1990s, the austerity politics driving such developments had begun to remake New York City decades earlier. During the 1970s, amid oil shocks, inflation, and global financial collapse, the city had garnered criticism for its Great Society–era investment in the public sector, including its robust social services, its free public university, and its elaborate network of municipal hospitals (Phillips-Fein 2017).

able-bodied persons receiving government assistance to work, and eliminated the Aid to Families with Dependent Children (AFDC) entitlement program. In addition, Congress passed the Illegal Immigration Reform and Immigrant Re sponsibility Act. Together, these initiatives reduced the eligibility of legal immi grants, as well as refugees, for most need-based social services. For instance, legal immigrants like Fan and her mother became ineligible for food stamps, and refu gees became eligible for food stamps and supplemental security income (SSI) for only their first five years of residence. Illegal immigrants remained almost entirely ineligible for federal benefits (Huber and Espenshade 1997).

Following the city’s financial crisis of 1975, administrators eviscerated such provi sions by withdrawing and reallocating funds earmarked for centers for child care and early childhood education, libraries, parks, schools, playgrounds, hospitals, and police and fire departments. By 1978, the public workforce had shrunk by nearly 70,000, with layoffs disproportionately impacting Black, Latinx, and fe male workers, who often had less seniority and thus less protection (Phillips-Fein 2017). During the 1980s, policymakers continued to gut the social safety net, prioritizing the growth of free enterprise, while the 1990s brought further attacks on labor unions, the embrace of “workfare” programs for poor women, and the acceleration of broken-windows policing under Mayor Rudy Giuliani. Econom ic disparities in the city festered throughout the 2000s under the Bloomberg ad ministration. By 2013, 21% of New Yorkers, or nearly 1.7 million people, lived below the poverty line, while the average household in the top 5% earned 88 times as much as a household in the bottom 20% (Phillips-Fein 2017).

In addition, nearly 6,700 residents in New York State’s nursing homes and long-term care facilities, like Fan’s mother, had died of symptoms of COVID-19 as of October 2020, which represented 20% of the state’s overall death toll. Na tionwide, more than 84,000 coronavirus-related deaths have occurred among patients in such institutions, and these fatalities have comprised 38% of the over all death toll in the US as of October 2020. COVID-19 has been especially lethal within these facilities due to the high numbers of people over the age of 60 living there, the widespread prevalence of underlying health conditions that render this population more vulnerable, the congregate living arrangements, and the volume and frequency of workers moving between rooms (New York Times 2020).

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Throughout New York State, moreover, the pandemic has disproportionately impacted communities of color, as well as the disabled and elderly populations. Fatality rates attributed to the coronavirus have been markedly higher among Black and Latinx residents. By the end of March 2020, it had been estimated that Black (non-Hispanic) adults were 5.38 times more likely to die of COVID-19 symptoms than White (non-Hispanic) adults, whereas Latinx adults were 3.48 times more likely (Holtgrave et al. 2020). These disparities have been attribut ed to “upstream” factors unevenly distributed along lines of race and wealth accumulation, including housing and food insecurity, high housing density, a higher percentage of front-line occupational work, and a heightened reliance upon public transportation, all of which have made social distancing difficult, if not entirely impractical. It has also been pointed out that poor clinical outcomes within the Black community in response to COVID-19 have been exacerbated by underlying health conditions such as diabetes, coronary disease, and chronic lung disease, all of which have been linked to environmental stressors and struc tural inequalities.

New York State’s death toll across such institutions has spurred criticism of Gov. Cuomo’s late-March order, amid ongoing proposals to cut Medicaid, for nursing homes to accept coronavirus patients from hospitals, at a time when hospital beds were being overwhelmed with new admissions. In response, the State Department of Health released a report that instead blamed 37,500 nursing

Even as the pandemic had begun to ravage New York City, in mid-March 2020 a panel convened by Gov. Andrew Cuomo announced plans to cut the state’s Medicaid program by identifying $2.5 billion in potential savings. The proposals included $400 million in cuts to hospitals, even as beds and ventila tors grew glaringly scarce and the state’s death toll was on its way to the nearly 35,000 fatalities registered by October 2020. Many of the hospitals that stood to be compromised by the cuts were so-called safety-net hospitals, which largely served uninsured or undocumented residents. It is important to point out that this population faced—and continues to face—heightened susceptibility to the coronavirus due to cramped living and working conditions, and an incapacity to practice social distancing (Ferre-Sadumi and McKinley 2020).

These structural and racial insecurities constitute the backdrop against which Ying found herself the target of an evacuation raid at Carter in April 2020, for failure to comply with the hospital’s lockdown orders banning all visitors. What is

Bracketing the Cuomo administration’s dubious decisions, the Health Depart ment’s report calls attention to the tenuous conditions of life and labor, in the midst of the pandemic, for health-care workers such as Ying and Zhou, Fan’s mother’s Fujianese aides. It is remarkable that Zhou normally traveled two hours one-way to get Carter Hospital from her multi-generational and multi-family home in Queens, which she shared with her son and his in-laws. Home to one of the most ethnically diverse, as well as income-stratified populations in the city, Queens has suffered one of the highest rates of infection among all of New York City’s boroughs (Holpuch 2020). Zhou’s and Ying’s stories also highlight the rel atively high numbers of Asian American and Pacific Islander (AAPI) health-care workers not only in New York, but across the US, who are providing “essential labor” and are at higher risk for infection. In New York State in 2018, there were 134,824 AAPI health care workers, who made up 11.6% of the health-care workforce; nationwide, the figures were 1.4 million health-care workers, or 8.5% of the health-care workforce, even though AAPI’s represented only 6.8% of the US population (New American Economy 2020). Almost 1 million of these AAPI workers were immigrants, like Zhou and Ying.

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home workers, who had become infected since mid-March, for transmitting the virus to patients (Ferre-Sadumi and Harris 2020).

Zhou’s work schedule, which includes four hours of round-trip travel per day in order to care for Fan’s mother at Carter, also provides a glimpse into the lives of other working-class Asians in the time of coronavirus. New York State is home to the second-highest number of Asians working in the accommodation and service sectors in the nation (Frauenfelder 2016). Along with health-care workers, these employment sectors include transit workers, restaurant owners, food service workers and chain suppliers, grocers, dry-cleaners, and personal ap pearance workers, all of whom are especially vulnerable to changes in both health and economic status amid the pandemic (Kwon 2020). Although the overall fatality rate due to COVID-19 in New York City has been reportedly lower among Asians than among other ethnic groups, including Whites, this disparity may reflect a lack of widespread testing within predominantly Asian communities (Mays and Newman 2020; Pan 2020). Meanwhile, the number of unemploy ment claims spiked to 147,000 among self-identified Asian workers in New York City during April 2020, compared to 2,100 in April 2019, which was the largest increase among all ethnic groups. Although this plunge in employment may re flect early social distancing practices within Asian communities prior to citywide shelter-in-place regulations, another important factor is the high concentration of Asians in the food and service industries, and the xenophobia that has dispropor tionately affected Asian businesses (Liao 2020).

ALS, COVID-19, and Biocitizenship

Autopsy of the Living 363summer 2021 • volume 64, number 3 striking about this incident is the violence exacted upon Ying’s body in the name of public safety, as security staff burst into Cong’s hospital room and dragged Ying out of the building against her will, while Fan pleaded with the officers over the phone to no avail. The brutality of the encounter recalls the history and politics of disease containment leading up to and beyond the passage of the Chi nese Exclusion Act of 1882, which remains the only US law ever passed that has banned immigrants of an entire ethnicity or nationality. During the last quarter of the 19th century, public administrators and medical experts in California and Hawaii rationalized the failure of their sanitary programs by tracing disease out breaks to Chinese laborers and their living conditions. Beginning in the 1860s, health officials in San Francisco and Honolulu cast the Chinese as unhygien ic, unsanitary, noncompliant with public health regulations, and consequently a threat to the health and welfare of the nation. Well into the 1900s, this narrative legitimized ongoing raids, poisoning, and fumigation practices throughout Chi nese communities to ferret out lepers and other presumed disease-carriers. In addition, policymakers imposed interstate travel restrictions, as well as detention and quarantine protocols (Trauner 1978).

Ying’s forcible expulsion by Carter’s security staff also resonates with the heightened specter of deportation that other Asian immigrants, including Viet nam War–era refugees, have faced in the 21st century, which intensified under the Trump Administration. Although in recent years much attention has been given to deportees from Latin America and the Middle East, in the early 2000s the US also began accelerating deportment proceedings against nearly 5,000 Lao tian refugees, nearly half of whom had been in the US for 20 years or more at the time of deportation orders. Many of these refugees are Hmong, an ethnic group that fought alongside the US during the Vietnam War, and who were offered asylum in the US during the 1970s (Mentzer 2020). The Trump Administration called upon Laos, Cambodia, and Vietnam to accept more deportees and of fered these nations funding for reintegration programs. Having first secured a deal with Cambodia, Immigration and Customs Enforcement (ICE) officials under Trump pressured Vietnam to accept similar arrangements, as 7,000 Vietnamese immigrants had been ordered removed as of 2019. Such an agreement signaled a reversal of repatriation policy in place since 2008, which stipulated that Vietnam would not accept refugees who entered the US before 1995, which was the year Vietnam and the US resumed diplomatic relations (Dooling 2019). Although the upsurge in deportation signals the intensification of violence against Asian immigrants on a different scale, Ying’s encounter with Carter’s security staff calls attention to the broader racial politics of surveillance in the time of COVID-19.

Amid the lockdown orders that separated Fan from her mother and forced Ying from Cong’s room, it is remarkable that Fan immediately publicized her predic

Fan’s plea on Twitter attracted the attention of state-level politicians who helped lobby, with palpable effect, to return Ying to Cong’s bedside. In this respect, Fan’s advocacy for her ALS-stricken mother advanced along the same route as ALS awareness-raising campaigns of the 1990s and early 2000s, which gained public visibility with Congressional support. In 1992, President George H. W. Bush proclaimed May to be National ALS Awareness Month, a decla ration which coincided with the ALS Association’s (ALSA) annual Volunteer Leadership Conference in Washington, DC. The conference assembled hundreds of volunteers, people with ALS, and health-care leaders, all wearing blue ribbons reading “Strike Out ALS” in tribute to the baseball player Lou Gehrig, who famously succumbed to the affliction, and after whom the disease has been nick named. The activists met with Congress members from all 50 states, in order to educate them about the disease, and their recommendations were clear: Congress needed to commit no less than $100 million to cure ALS by the year 2000 (PR Newswire 1992).

Fan’s advocacy for her mother resonates with the modes of thought and action to which Nikolas Rose and Carlos Novas (2005) have referred in their concept of “biocitizenship.” Biocitizenship refers to emergent understandings and practices of subjectivity, based on a shared or mutually recognized biological condition. In what follows, I suggest that Fan’s story reflects both the history and horizons of biocitizenship vis-à-vis ALS and other age-related and debilitating conditions in the time of COVID-19.

ament on social media and mobilized the Twitter community. After asking her nearly 60,000 followers for help funding a food drive for Carter’s staff, she turned to Twitter once more and posted a screenshot of Ying’s anguished expression when Carter’s security team dragged the aide from the building. Fan then used Twitter to attract the attention of prominent Twitter personalities. The collective pressure persuaded Carter’s CEO to allow Ying to return to Cong’s room by the following day.

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What is striking about Fan’s story is the role that social media played in raising public awareness about her mother’s predicament, which in all likelihood saved her mother’s life. Although Fan is a widely read writer for the New Yorker, she is by no means a high-profile celebrity, or someone with formidable political clout. Her story illustrates the power of social media to amplify the voices of ordinary people as they navigate life-threatening diseases and lobby for increased aware ness, resources, and social and institutional support for themselves and others.

The drive to establish May as National ALS Awareness month had been spear headed by US Senator Bob Graham (D-FL) and US House Representative Dante Fascell (D-FL), after a 20-year-old intern named Kevin Packman, whose father suffered from ALS, brought the matter to Graham’s attention. Over the next sev eral years, the ALSA continued to pressure Congress to increase funding for the National Institutes of Health for ALS research, and to remove the legal barriers

From the 1990s to the early 2000s, the ALS community’s strategies of biocitizenship were focused on group action and oriented around seeking Con gressional support, federal funding, and capitalizing on celebrity name-value in order to build investment in understanding and curing the disease. However, in the early to mid-2010s, the ALS community engaged in a number of me dia-savvy consciousness-raising activities, including the Muscular Dystrophy Association’s (MDA) commemorative website marking the 20th anniversary of President Bush’s 1992 proclamation of National ALS Awareness Month, as well as the highly publicized Ice Bucket Challenge of 2014. Fan’s advocacy for her mother during the COVID-19 pandemic recalls these kind of efforts, in that her efforts underscored the power of individual citizens to leverage social media to raise money, mobilize public sentiment, and pressure people and institutions to intervene on behalf of those stricken with ALS. .

In May 2011, the MDA launched a series of online videos called “ALS: Any one’s Life Story.” The videos profiled 31 different people from 20 US states who were living with ALS and were posted on an interactive “ALS Awareness Month” website (ALSA 2011). The site also featured a gallery of artwork created by people with ALS, as well as a section called “ALS: It’s My Story Too,” to which people and families affected by ALS could contribute. In addition to am plifying the life stories of everyday people, the site helped develop new connec tions and support systems among the ALS community, across geographical space and time (Brown 2011). This dynamic of virtual community-building exploded in 2014, when three men with ALS, Peter Frates, Pat Quinn, and Anthony Senerchia, founded the Ice Bucket Challenge as a fundraiser for the ALSA. Tap ping their extensive social networks, Frates, Quinn, and Senerchia challenged 17 million people with the choice of either donating to the ALSA or dousing them selves with a bucket of ice water. In response, over 2.5 million donors raised $115 million for the ALSA, the bulk of which was donated to ALS research. Between 2014 and 2019, researchers used the funds to identify five new ALS susceptibility genes, while subsidizing dozens of new drug and therapy trials. The funds from the Challenge also supported nearly 50 new ALS treatment centers in the US and helped increase the numbers of ALS research collaborations around the globe (ALSAFan’s2019).outreach on her mother’s behalf also echoes other consciousness-raising and political advocacy efforts that have mobilized via online communications

Autopsy of the Living 365summer 2021 • volume 64, number 3 to integrating stem cells into basic ALS research and drug development. In addi tion, the ALSA lobbied to increase Medicare benefits and to expand respite care for people living with ALS (CQ Transcriptions 2005). Along the way, the ALSA’s representatives drew upon names of prominent people besides Gehrig who had suffered from symptoms of ALS, including the US Congressman Jacob Javits, the actor David Niven, the musician Charles Mingus, and the astrophysicist Stephen Hawking (US Congress 1998).

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technologies in the time of COVID-19, particularly on behalf of patients, fam ilies, and workers affected by outbreaks in nursing homes. On June 6, 2020, for example, the advocacy group Senior Disability Action hosted a gathering on Zoom called “Naming the Lost, Fighting for Our Lives: A Vigil and Call to Action.” The event created a meeting space for people from the disabled and elder-care communities to collectively mourn the loss of lives in nursing homes across the state of California due to COVID-19. The meeting’s attendees devised plans to hold nursing home executives accountable for their profit-oriented deci sion-making and to protest Gov Gavin Newsom’s proposed budget cuts to social security, in-home supportive services, and programs for older adults and people withAttendeesdisabilities.at the virtual meeting, who included people currently staying in California nursing homes, emphasized that the crowded living conditions, the drastic shortages of personal protective equipment (PPE), and the lack of ade quate medical and safety training for staff had rendered patients and workers alike extremely vulnerable to COVID-19. The attendees also pointed out the dispro portionately high concentrations of Black, Latinx, and Asian and Pacific Islander women performing low-paid care work in such facilities. In light of the hazards posed to residents, as well as the racial and gendered disparities in labor and vul nerability at nursing homes, participants in “Naming the Lost” pledged to contest efforts by lobbyists to extend liability protections for the nursing home industry in the midst of the pandemic. In addition, the event spurred ongoing campaigns on social media against Gov. Newsom’s proposed cuts to health-related and so cial services, which appeared successful when Newsom relented at the end of June 2020 (Myers 2020). Under the conditions of extreme insecurity that the COVID-19 pandemic has laid bare, both Fan and the Senior Disability Action collective have illustrated the power of everyday people to organize effectively via online communication technologies.

Conclusion At the time of writing this essay, nearly a year after Fan and her mother’s crisis at Carter Specialty Hospital, Cong’s story still haunts my day-to-day awareness of the fragility of life among Asian and Asian American elders living in the US. Concurrently, I have been reminded of the staunch resilience of communities of Asian descent during the pandemic, particularly amid a surge of anti-Asian hate crimes that has intensified across the country, and that has coincided with the two-week-long celebration of the Chinese Lunar New Year. It’s been hard not to notice that older and elderly Asians have been targeted. In late January 2021, in Oakland’s Chinatown, where my grandmother lived for decades, someone snuck up behind a 91-year-old man, a 60-year-old man, and a 55-year-old woman on the same day, and viciously shoved them all to the ground. A stone’s throw away

Autopsy of the summer • volume 64, number 3 in San Francisco, an 84-year-old man from Thailand was attacked and killed during his morning walk. In response, Asian American activists and celebrities have collaborated with community leaders to raise awareness of such incidents and to demand accountability (Brito 2021; Westervelt 2021).

References ALS Association (ALSA). 2011. ALS Awareness Month. http://awareness.als.mda.org. ALS Association (ALSA). 2019. “Founders of the ALS Ice Bucket Challenge and the ALS Association Launch ‘Challenge Me’ Campaign to Mark 5th Anniversary of Biggest Medical Movement in History.” ALS Association, May 13. Asians 4 Black Lives. 2020. “Structural Racism is the Pandemic, Interdependence and Solidarity is the Cure.” Medium, July 11. Brito, C. 2021. “Suspect Arrested in Series of Violent Attacks Against Asian Americans in Oakland.” CBS News, Feb. 10. Brown, J. 2011. “20th Anniversary of ALS Awareness Month: MDA to Honor 31 Amer icans.” MDA News, May 3. Campanile, C., et al. 2020. “New York Has Thrown Away 20,000 Hospital Beds, Com plicating Coronavirus Fight.” NY Post, March 17. Chou, R., and J. Feagin. 2015. The Myth of the Model Minority: Asian Americans Facing Racism. New York: Routledge. CQ Transcriptions. 2005. “US Senator Arlen Specter (R-PA) Holds Hearing on Lou Geh rig’s Disease (ALS).” CQ Transcript, May 11. Dooling, S. 2019. “40 Years After the Vietnam War, Some Refugees Face Deportation Under Trump.” NPR, March 4. Fan, J. 2020. “How My Mother and I Became Chinese Propaganda.” New Yorker, Sept. Ferre-Sadumi,14. L., and A. Harris. 2020. “Does Cuomo Share Blame for the 6200 Virus Deaths in N.Y. Nursing Homes?” NY Times, July 23. Ferre-Sadumi, L., and J. McKinley. 2020. “New York Hospitals Face $400 Million in Cuts Even as Virus Battle Rages.” NY Times, March 30.

As the pandemic wears on, it seems appropriate to close with the words of the queer Korean prison abolitionist Hyejin Shim: “What are the legacies we’ve in herited, [and] which ones will we choose to protect?” (Asians 4 Black Lives 2020)

2021

As the nation’s death toll continues climbing amid haphazard national and local vaccine rollouts, I have been reminded not only of Cong’s fellow nurs ing home residents, but of the health-care providers, such as Ying and Zhou, who keep them alive. A year after major cities in the US first locked down, the pandemic continues to underscore the uneven distribution of vulnerability even among essential workers: although they only make up 4% of the nursing popula tion nationwide, nearly a third of the nurses who have died during the pandemic in the US have been Filipinx (Shoichet 2020). Meanwhile, Black nurses, who make up only 12% of the nursing population, have accounted for 18% of the nursing community’s deaths due to COVID-19 (Marples 2021).

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Frauenfelder, M. 2016. “Asian Owned Businesses Nearing 2 Million.” Survey Bus Owners, July González-Rivera,27. C. 2013. “The New Face of New York’s Seniors.” Center for an Urban Future, Hartecollis,July.A. 2009. “City’s Public Hospital System to Cut Jobs and Programs.” NY Times, March 19. Hartlep, N. 2013. The Model Minority Stereotype: Demystifying Asian American Success. Charlotte: Information Age. Holpuch, A. 2020. “Corona in Corona: Deadly Toll in a New York Neighborhood Tells a Story of Race, Poverty, and Inequality.” Guardian, June 15. Holtgrave, D., et al. 2020. “Assessing Racial and Ethnic Disparities Using a COVID-19 Outcomes Continuum for New York State.” Ann Epidemiol 48: 9–14. Huber, G., and T. Espenshade. 1997. “Neo-Isolationism, Balanced-Budget Conserva tism, and the Fiscal Impacts of Immigrants.” Int Migr Rev 31 (4): 1031–54. Klinenberg, E. 2001. “Bodies That Don’t Matter: Death and Dereliction in Chicago.” Body Society 7 (2–3): 121–36. Kwon, D. 2020. “Confronting Racism and Supporting Asian American Communities in the Wake of COVID-19.” Urban Wire, March 24. Landale, N., K. Thomas, and J. Van Hook. 2011. “The Living Arrangements of Children of Immigrants.” Future Children 21 (1): 43–70. Liao, S. 2020. “Unemployment Claims from Asian Americans Have Spiked 6900% in New York. Here’s Why.” CNN Business, May 1. Lobo, A., and J. Salvo. 1998. “Changing US Immigration Law and the Occupational Selectivity of Asian Immigrants.” Int Migr Rev 32 (3): 737–60. Marples, M. 2021. “‘Absolutely Defeated’: Black Nurses Struggle with Mental Health Support While Battling COVID-19.” CNN Health, Feb. 22. Mays, J., and A. Newman. 2020. “Virus Is Twice as Deadly for Black and Latino People Than Whites in N.Y.C.” NY Times, June 26. Mentzer, R. 2020. “Hmong Leaders Rally Against Trump Administration Deportation Push.” NPR, Feb. 24. Myers, J. 2020. “Newsom Agrees to Rethink Sharp California Budget Cuts in Deal with Lawmakers.” LA Times, June 22. New American Economy. 2020. “Asian Americans and Pacific Islander Americans on the Front Lines.” New American Economy Research Fund, May 21. newamericaneconomy.org/report/aapi-americans-on-the-frontlines/.https://research. New York Times. 2020. “About 38% of US Coronavirus Deaths are Linked to Nursing Homes.” NY Times, Oct. 20. Pan, D. 2020. “A Befuddling Phenomenon: Why Are Boston’s Asians Underrepresented in Coronavirus Cases and Deaths?” Boston Globe, May 29. Phillips-Fein, K. 2017. Fear City: New York’s Fiscal Crisis and the Rise of Austerity Politics. New York: Henry Holt. PR Newswire. 1992. “ALS Association Leads New Drive Against Disease as National Awareness Month Is Proclaimed.” PR Newswire, May 14. Rose, N., and C. Novas. 2005. “Biological Citizenship.” In Global Assemblages, ed. S. J. Collier and A. Ong, 439–63. Malden: Blackwell.

Autopsy of the Living 369summer 2021 • volume 64, number 3 Shoichet, C. 2020. “COVID-19 Is Taking a Devastating Toll on Filipino American Nurses.” CNN Health, Dec. 11. Trauner, J. 1978. “The Chinese as Medical Scapegoats in San Francisco, 1870–1905.” Calif Hist 57 (1): 70–87. US Congress. 1998. The ALS Research, Treatment, and Assistance Act of 1997: Hearings on H.R. 2009. 106th Cong. Testimony of Joshua Javits, the Board of Trustees of the Amyotrophic Lateral Sclerosis Association, Jan. 28. Federal Clearinghouse Congres sional Testimony, 1998. Westervelt, E. 2021. “Anger and Fear as Asian American Seniors Targeted in Bay Area Attacks.” NPR, Feb. 12. Wu, E. 2015. The Color of Success: Asian Americans and the Origins of the Model Minority. Princeton: Princeton University Press. Zhou, M., and J. Lee. 2017. “Hyperselectivity and the Remaking of Culture: Under standing the Asian American Achievement Paradox.” Asian Am J Psychol 8 (1): 7–15.

My story starts with a flashback that aptly captures my life before COVID: it’s an image of me driving to work, maybe at a red light, scrolling through Facebook—one of the many routine wagers I’d put on safety to feel accomplished before 9 am. It’s the moment I learned that New Zealand would be going into full, socially isolated lockdown in just 48 hours’ time. I saw the news in a post made by my gym of all places, inviting members to take some equipment home for the duration. “Shit,” I thought, “I’d better get there early for the 12.5 kgs dumbbells,” and then I mentally rearranged my day to make that happen. (It did.)

The author discusses how Prime Minister Jacinda Ardern’s call to kindness triggered the author’s desire to center love as a personal-political project through the contempla tive practices encouraged by the spiritual discipline of sadhana. The ensuing “pandemic story” is thus a journey of what the author thinks a politics of love requires: self-con templation, reflection and transformation, and the recognition that liberation hinges on our obligations to others. The process revealed how separation normalizes inequality and abuse and ultimately reaffirms the need for a “new normal” that prioritizes a poli tics of love and collective compassion.

Kathleen M. Kuehn

ABSTRACT

Victoria University of Wellington—Te Herenga Waka, New Zealand. Email: kathleen.kuehn@vuw.ac.nz. Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 370–386. © 2021 by Johns Hopkins University Press 370 You Must Change Your Life a journey toward love and kindness

This essay offers a reflection on the author’s personal experience with the global pandemic, which was experienced as an unrooting of self from a USborne identity to one committed to the “Be Kind” politics of Aotearoa New Zealand.

Our then-still-relatively unknown Prime Minister, Jacinda Ardern (2020), had formally outlined the government’s medically advised COVID-19 crisis plan, taking just six minutes to reassure an anxious population that everything would be okay. She had closed her speech with what would become the nation’s med itative mantra over the weeks that followed: “We may not have experienced anything like this in our lifetimes, but we know how to rally and we know how to look after one another, and right now what could be more important than that? So thank you for all you’re about to do. Please be strong, be kind and unite against COVID-19.” While we knew this might be coming, the idea of house arrest for the unforeseeable future seemed a bit, well, precautionary. Selfishly, though, it also felt a bit exciting. As a small nation so far from everywhere else it had been difficult to feel like we were even part of the pandemic at all. We’d had only 52 total confirmed cases earlier that week, which seemed barely worth a byline compared to the mediated hysteria about places like China, the US, and the UK. Many of us had arrogantly sat back and said what we always do: “Jesus, those places are crazy.” Now, it seemed, we’d become part of that crazy, too.

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And while we kind of did, we also kind of didn’t—it depends on who you ask. There are lots of reasons things transpired so differently here than elsewhere— size, cultural attitudes, history, government response—but how those differences played out were stark. At the time, the overriding message—be strong, kind, united—didn’t sound like anything I heard coming from other parts of the world. As then-US President Trump leveled up on scarcity—hoarding medical supplies, promoting intra-state competition, boasting about being the “first” and “best” at recovery—Ardern put her discursive efforts into kindness. She also secured bor ders and introduced wage subsidies and strict isolation measures, but the kindness rule seemed to supersede all. Ideally, extending kindness towards your neighbor goes without saying, but we live in anything but ideal times. I doubt few would deny the value this brings to making the world a better place, but as Sharon Salz berg (2005) rightly notes, a “kind heart [ranks] awfully low in cultural desirabili ty, well after a sound head, a sharp wit, invulnerability, power over others, a fine sense of irony, and countless other qualities” (5). Salzburg’s observation underscores just how disassociated matters of the heart and politics have become in recent decades. So perhaps that’s why, against the backdrop of looming insecurities brought by the pandemic, Ardern’s call to kind ness triggered such a profound and unsettling realization—the recognition that, for many reasons, I simply didn’t have the energetic space for what true kindness actually requires: patience, non-judgment, acceptance, and most of all, love. But I believed in its power, and that’s what woke me up. My pandemic story thus tells of a journey of waking up to the Self; it is a story in which the personal and political collided as my privileges enabled lockdown to serve as an opportunity to reflect on how the life I’d been living no longer served me or the calls to solidarity the pandemic engendered. Ardern’s call to kindness

prompted this unexpected journey home through the spiritual discipline of sad hana, the Sanskrit concept for any routine practice performed in the pursuit of personal growth. Much of what transpired since has really been a meditation on what a politics of love requires: self-contemplation, reflection and transformation, and the recognition that liberation hinges on our obligations to others. In many ways the pandemic makes clear how our separation normalizes inequality and abuse. It reaffirms the need for a “new normal” that prioritizes a politics of love if we are to find solidarity in a global experience that is anything but commonly shared. He waka eke noa A canoe which we are all in with no exception. — M¯aori proverb

Kathleen M. Kuehn

Whilst scowling at the driver who’d impatiently honked when the light turned green as I sat scrolling Facebook, I irritably thought: tomorrow can’t come soon enough. No more traffic, no more meetings (I’d hoped!), no more peopling. As someone who’s functioned on overdrive for 40-plus years I felt giddy at the pros pect of having nowhere to go and nowhere to be for an undetermined period of time. I felt ashamed of it, knowing how privileged I was to feel that way, and so it wasn’t something I openly shared. But it’s the truth, and I sometimes pine for it now.From day one I totally bought into the “Be Kind” magic on the most superfi cial of levels, completely and uncritically, high on the excitement of nowhere to go/nowhere to be. Never mind all those years I’d spent silently eye-rolling my US compatriots who wore yellow ribbons or gave up eating “French” Fries after 9/11, here I was in a foreign land answering the same call to solidarity and I was all in. And it wasn’t just me. In that 48 hours before our first major lockdown, “Be Kind” suddenly appeared everywhere: empty storefronts, people’s windows, church signs, bus tops, graffiti tags. Rallied by a spirit of kindness and compassion, generosity poured out, too: gyms emptied stock to members, businesses gave away food and services, community Facebook pages crowd-sourced solutions to everyone’s last-minute needs and problems. It seemed like nearly all of New Zealand took part in the “Great Kiwi Bear Hunt,” an effort to entertain children and spread a little joy by placing teddy bears in the windows of any building visible from the street. It had an overwhelming effect, all those button-eyed, eartorn stuffed animals just sitting there looking out, rooting you on from behind theOnglass.the first day of lockdown I broke down in tears midway through my after noon jog, overwhelmed by the collective effort of cheer. When I returned home I promptly put the only teddy bear I owned in my own bedroom window, as well—Old Blue, stitched together from a pair of blue-plaid felt boxer shorts that

372 Perspectives in Biology and Medicine

Graffiti on a Wellington, New Zealand, street. Credit: Emily Greenbank.

Figure 1

my best friend made me for my 16th birthday. He’s still there, in fact, looking out at the joggers and the sea, even as all his neighborhood friends have been taken down and put back to wherever they “belonged.”

Warmed with gratitude I felt both proud and extremely lucky to be here. No armed militias stormed city hall, no one seemed mad, and neither government nor the media did any hideous finger-pointing at China. As conspiracy theories circulated about Anthony Fauci’s “plandemic,” New Zealand’s Director-General

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of Health

perfect, exhaustive, nor universally experienced, our COVID crisis plan alleviated some of the burdens I saw many non-New Zealanders carry. So kindness and togetherness came easy because, for once, I had the space for it. As a white, middle-class, single woman with a well-paid academic gig living alone with no kids, pets, or complicated plants, I had few material concerns. I had been promised I wouldn’t go hungry, homeless, hurt, or broke. I had a boyfriend down the road I could “bubble” with on weekends (more on this later), but I intentionally chose alone. Should shit really hit the fan like it had for friends and family in other parts of the world, I trusted I would be cared for. Looked after. I felt like I suddenly belonged to something much bigger than myself—or maybe, just that I even belonged to some place at all. I don’t mean for this to read as a turncoat critique of “mean America,” but it’s simply the truth that the respec

Ashley Bloomfield became a beloved internet meme for his soft-spo ken, no-nonsense delivery of less-than-ideal COVID updates. You can now buy boutique bath towels embroidered with his face surrounded by hot pink love hearts. America burned over George Floyd, Breoanna Taylor, Ahmaud Arbery and other Black Lives Taken, while Jacinda tucked us in each night on Face book Live after putting her daughter to bed, reassuring us into sound sleep not to worry, we would get through this together. On my neighborhood street, kids scribbled “kia kaha” (“be strong”) all over the footpaths; in New York’s streets, refrigerated rigs that once hauled palates of packaged salads, cheese, zoo penguins, and bereavement lilies now chilled the dead, because when thousands of people die at once and there’s no room for their bodies, “their remains become your new neighbors” (Cherelus 2020). It felt like an incredible act of both resistance and privilege to sit with such ease in the face of so much suffering. I’d been le gally mandated by New Zealand to stay home and be nice, while thousands from my mother country were dying, local economies and social structures collapsing. With moratoriums placed on housing evictions and panic buying, we were re assured no one would go homeless or hungry. An economic recovery plan swiftly rolled out wage and business subsidies to all income-earners and firms affected by the pandemic’s forced closure of, well, nearly everything. These payments kept a significant part of the nation afloat and for many un(der)-employed citizens, still do. New Zealand’s public health system added to the pandemic safety net, as any fear one might have had about catching COVID didn’t come with the added worry of unpayable medical bills. Unlike America, New Zealand’s heavily sub sidized health-care system covered those expenses, too. To live in a country that describes its health system as “built on Kiwis’ inbuilt need to see that everyone gets ‘a fair go’ in life” (NZ Immigration 2021) did not escape me in the way it might have for nationals raised to see health care as a right instead of a privilege (although detractors certainly exist). Even just one of these things, like health care for instance, is enough to send many of my American family and friends into

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Kathleen M. Kuehn

worry-overdrive.Whileneither

There’s no linear trajectory to my unraveling and rebuilding, which makes it a challenging story to tell. I mostly remember it now like a holiday for my soul. However, there’s one distinct memory that sticks out from the second day of

You Must Change Your Life 375summer 2021 • volume 64, number 3 tive responses between here and there marked the beginning of my pivot, of an unrooting of self from my national-borne identity to one committed to the “Be Kind” politics of Aotearoa. This wasn’t as easy as I’m making it sound, of course. If you haven’t lived under, or broken from, America’s pledge-of-allegiance conditioning, it might be hard to understand why this felt like a death of self, even though the breakup was a long time coming. I felt marred by a confusing mix of grief and relief, like the decoupling of lovers bound by habit or blind loyalty after years of sleeping in separate beds. This new sense of belonging didn’t replace one exclusive love-ofcountry nationalism for another, either. It felt more like the permission to finally accept what I have felt since the moment I set foot on this land eight years ago. In M¯aori culture, there’s a concept called t¯urangawaewae, meaning a “place to stand.” It refers to places of connection, one’s foundation, or sense of place in the world. Coming home. It felt like that. In those early days my privileges and the sheer luck of living here at all made it fairly easy to turn a blind eye to the fact that things weren’t all fluffy bunnies for everyone—certainly not for the 10% of the population who suffer from food insecurity in normal times, or those supporting an entire extended family on one income stream through a job that probably no longer existed. Compulsory distancing measures that prevented collective mourning, tangihanga (a traditional M¯aori funeral rite) and burial rituals disproportionately affected Muslim, M¯aori, Pasifika people, and other groups whose deeply held cultural values and customs around death and dying couldn’t be honored. Early border closures, strict securi ty, and quarantine measures meant many were shut out or trapped in. Thousands of tourists, foreign workers, and expats trying to get home lived in uncertainty for months, as flights with an inflated ticket price precariously opened and closed at a moment’s notice. Meanwhile, citizens stuck overseas were able to reenter after quarantining for two weeks in a state-run Managed Isolation Facility at a $3,000 NZD per person price tag. In the end, those who wanted to leave got out and those returning got in, but only if they could afford to pay for the privilege. If there’s one thing COVID has since made clear, it’s that the solidarity discourse obfuscated the very real social and economic inequalities that have shaped how some populations experienced the pandemic over others. But for people like me? Easy. Beginnings Why are you knocking at every other door? Go, knock at the door of your own heart. —Rumi

Level 4 lockdown in March 2020 that illustrates how my surrender to kindness started changing things. Sitting on my couch looking out over the cerulean sea swelling across the street, I reflected on an uncharacteristically emotional email I had just sent my mother. I had written it with the raw tenderness of an open heart, confessing my gratitude, my desire to move in love, my connection to place, and the underlying shame I felt for finding joy at these realizations in the context of so much suffering. I imagined how uncomfortable my sentimental unraveling would make her feel, especially where I thanked her and my father for everything they had done, even their well-intentioned mistakes, because each brought me to this point, to this place, to this moment. My mom and I don’t talk like this. (Like literally, not at all. We barely hug.) But there it all was, floating in the internet’s ethereal space, packets of 1s and 0s waiting to be reconstituted upon waking up into her own morning 16 hours behind mine. Having just released all of those thoughts and feelings to the most unlikely of recipients, I felt a palpable sense of fissure, a God-ray breaking through the passing cracks of a cloudy sky at dawn, shining the light of awareness into the darkest corners of my being. An in explicable calm stretched across my chest, my feet firmly rooted into the ground. I had extended a sort of kindness to my mother in a way I had never done before. Days later, she responded with an email that matched my vulnerability with her own. Our relationship hasn’t been the same ever since. With my attention no longer held captive by the 27 different things that would normally structure my day, my morning meditations (formerly known as “planning time”) became remarkably quiet. Pre-COVID, what little time I had I gave to everything else, which often left me empty, exhausted, and resentful. I had been conditioned to thrive in a hyper-competitive culture, running circles around life in a constant cycle of “productivity,” and I often found myself, as many of us do, routinely centering “Doing” at the expense of just “Being.” “I don’t know how you do it,” people would say with a mix of pity and admiration at my endless cycle of squeezing in and rushing through just this one last thing.

Kathleen M. Kuehn

A career in academia suited my deeply rooted tendencies towards overwork and overwhelm, since a healthy degree of self-loathing is both a prerequisite for the gig and a sure-fire indicator that you’re doing things right. I’ve thrived in the academy’s ambiguous metrics of “never enough,” and in fact I only pursued a PhD in the first place because a former supervisor suggested I couldn’t. I some times wonder how my life might have been different had I lived my own truth instead of one I wrote to defy someone else’s.

But now, sitting on that couch in the absence of my usual distractions, I felt the heaviness in the cavity of my chest melt like ice into water, vapor to gas; in later days, the chronic pain I had carried in my hamstrings for two years—no doubt a product of continuous fight-or-flight cortisol spikes—abandoned my body without tension or trace. There was so much spaciousness—mental, physi cal—in all my surroundings. I had nothing and no one to answer to, nowhere and

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On Love and Kindness

The unexamined life is not worth living.—James Baldwin But why kindness? What is its power? As “compassion in action” (Salzberg 2005), kindness is like the gateway drug to a much broader and powerful weapon—love. Kindness is not just rooted in love but is also a way through which love forms. Practically speaking, prioritizing kindness as a political response does little to challenge the normative belief in top-down sovereign power; Ardern certainly didn’t cede the state’s authority in asking everyone to be nice. This is somewhat different, then, from a politics of love that, at the risk of being reductive, breaks free from sovereign power’s control over others to one that forefronts the wellbeing of others. Many writers have explored what a “politics of love” means in both practical and theoretical terms, and the import of this concept seems to be grow ing in the context of so much polarization and unrest. It is partly because of this vast and varied terrain that I hesitate to philosophize about love as a political

377summer 2021 • volume 64, number 3 nothing to be, since the very infrastructures enabling my usual junctures were on lockdown, too. Just me with me, in stillness. In silence. I want to feel this way for the rest of my life. Weeks later, I would tearfully confess my fears about returning to the so-called “new normal” to my boyfriend, who gently responded, “But why do you think you can’t have the simplicity of lockdown all the time?” It had never even occurred to me that I could. The thought landed with the force of being shaken into consciousness while not realizing I had even been asleep. Then came the death of George Floyd. Again, I found myself on the couch, only this time looking out at the mediated spectacle of a deeply divided Red Sea: anti-racist protestors, Black Lives Matter supporters on one side, and equally relentless counter-protestors, apologists, and extremists on the other. I felt dev astated, conflicted, but my reflections on kindness took new urgency even as I questioned what good “Be Kind” served in such an unjust world. That world may not change any time soon, I realized, but I could.

You Must Change Your Life

Being locked down with nothing but my thoughts revealed the ugly truth of how the life I had been living actually didn’t leave much space for prioritizing the kind of universal compassion and kindness Ardern seemed to be calling for; I couldn’t even give that to myself! The exchange with my mother and the death of George Floyd brought my attention to the need for outward compassion and kindness, while my mental and physical health evinced the need to extend these same gestures towards myself. The spirit of the cultural moment was speaking to my heart, insisting I awaken. As it did for the observer in Rainer Maria Ril ke’s poem “Archaic Torso of Apollo” (1908), the same instructive urgency cut through the silence of my reflective solitude: You must change your life. It would mark the first of many awakenings.

Kathleen M. Kuehn

378 Perspectives in Biology and Medicine project or where kindness necessarily fits in. So I’ll leave it at this: while I regard kindness as an essential practice for extending and receiving love, it can’t really be the end game for societal transformation. Instead, kindness is a prerequisite for a politics of love, or at least as a way of moving us in that direction.

When speaking of love, I’m referring neither to eros, intimate romantic love, nor agape, a neighborly love which tends to assume a “sameness” that belies free dom’s much-needed honoring of difference. Rather, I think, love in a political sense lies somewhere between these formulations, perhaps within, across, and beyond. But again, I’m not here to operationalize love through impressive theo retical conceptualizations. My experience in this personal-political transformation has been largely guided by my own intuition as opposed to an analytically rig orous positioning, yet it is loosely informed by a mish-mash of influences: from the academic works of bell hooks, Sonya Renee Taylor, James Baldwin, and Michael Hardt, to the more pragmatic teachings of Buddhist, Hindu, and yogic philosophies that guide my own spiritual practice. While these works differ, a commonality that persists is the idea that love is just as much about the self as it is about others.

Borrowing the psychiatrist M. Scott Peck’s definition, hooks (2001) defines love as a willingness “to extend one’s self for the purpose of nurturing one’s own or another’s spiritual growth” in which the “spiritual” refers holisti cally to physical, mental and social well-being (4). Hardt warns, however, against focusing on “love of the same,” a tendency that dangerously coopts love to cre ate in-group/out-group or us/them associations, as in the case of nationalism, religious fundamentalism, white supremacy, and other forms of exclusion based on similitude. He thus presents a political definition of love as “a love that loves the stranger, a love that functions through the play of differences, rather than the insistence on the same” (Schwartz 2008/2009, 813). As a political notion, then, love requires a respect for—or at least a realization of—the humanity that both binds but also distinguishes us. Love isn’t just a feeling, either, although it can be that, too. It is an action, a form of power, as hooks maintains, that is rooted in one’s personal experience of loving and having been loved—sometimes badly, wrongly, inadequately, or with great dysfunction, which is what makes the need for self-inquiry, self-love, and self-care so essential to a loved-based political project. Related to this point, love cannot be given freely or with total abandon; there is some degree of self-pro tection or boundary-setting that is required in order to guard oneself from being victimized, overrun, taken advantage of, exploited, or used up. While selflessness, selfishness and self-care can sometimes seem like a delicate dance, the bottom line, as hooks (2001) reminds, is that where an ethic of love prevails, “domination cannot exist” (98).

Love is the very basis of our constitution, writes Sonya Renee Taylor (2018), and self-love is the necessary condition for extending love to others. As lockdown dragged on, my newfound sense of belonging, openness, and the fairly simple call

You Must Change Your Life 379summer 2021 • volume 64, number 3 to be kind in the context of multiple pandemics presented to me a quite basic but uncomfortable truth: I had to begin giving to me the very thing New Zealand was asking I give to everyone else: kindness, compassion, and most of all, love. To change the world, as they say, I really would have to start with myself. Sadhana I’ve been (re)awakening since the beginning of this lockdown. It feels like, in my skin: an overwhelming desire to disconnect, be alone and to avoid meaningless small talk and pointless noise. I like this version of myself much better. . . . I feel calm, grounded. I need less.—The break-up email, April 27, 2020 It feels like I am starting all over again. I make lists. Early on I magnetize “I Show Up For Myself By . . .” onto my fridge. It hangs over a photo of me and my then-boyfriend holding jumbo-sized vegan chilidogs with our hoodies up in the rain, making the best of a wet and dreary situation. 1. Make the bed 2. Meditate & Breathwork 3. Journal 4. No email before 9am. 5. Plan the day 6. Keep things tidy . . . . . . 13. Remember, you didn’t do anything wrong! 14. Set clear boundaries. In hindsight, it surprises me that “Stop buying clothes without pockets” didn’t make the cut, but these were just the first things that came to my mind, and I stopped writing when nothing else arose. I had written my list after waking up one morning from a martini-fuelled on line quiz night hosted by my gym, but it hadn’t been my first—or my second— hangover that week. I had also just broken up with my boyfriend, who I’d shared a bubble with over the first two weekends, because he watched too much TV. I couldn’t cope with the cacophony of noise, or the constant schadenfreude he relentlessly expressed in response to CNN’s 24/7 Trump coverage, which always seemed to be on. I didn’t find any of it funny, and I just wanted some peace. I lay there with a terrible hangover, cycling through one of my old-school crash-andburn shame spirals, a broken record of negative self-talk that won’t quiet because there’s no satisfactory reply that can silence one’s own self-loathing. But there amongst the self-shaming came the voice of Rilke’s headless Apol lo—a message from the heart, screaming from the inside. Start showing up for yourself. So I got up and made the list.

Kathleen M. Kuehn Perspectives in Biology and Medicine

Not-Enoughness; to clearing space for self-love, compassion, and kindness; to show up for myself so I could start showing up for others. I would like to believe that it’s the simplicity of these daily practices and affirmations that spoke to their power, but I’m not sure. We don’t always choose how the lessons arrive; some times, God just shows up in ways your consciousness will recognize. In the weeks that followed, I got up every day committed to doing the work, forging a basic mindfulness practice by completing these small commitments that would go on to inspire and nurture much bigger internal changes. Sadhana en ables practitioners to connect to themselves, to remember their “why,” their purpose; to be present without avoiding the task at hand or wishing things were another way. Through meditation, I began to see how putting space around my thoughts and feelings allowed me to make better choices about how I re spond to life’s unpleasantries and triggers. As opposed to unconsciously shooting straight from the hip—my default response when operating under the constraints of time/space/resource scarcity—I began to tap into the crucial moment of pause, which presents the opportunity to make a choice: to either consciously respond from a place of love and compassion or unconsciously react in anger, frustration, or abuse. As the Buddhist nun Pema Chodron (2016) describes, “The more we witness our emotional chain reactions and understand how they work, the easier it is to refrain. It becomes a way of life to stay awake, slow down and notice” (36). Put differently, the choices we make when we respond to the world are enough to exact change, because every interaction becomes one that decides: “Am I going to practice peace or am I going to war?” (12). We can choose to add more aggression to an already angry and aggressive world, perpetuating this cycle forever, or we can slow down, notice our reactive desires and our impulses, and proceed from a space of lovingkindness. From the latter, we can speak our truth while doing the least amount of harm.

Some of my sadhana practices (especially numbers 2, 13, and 14) invited me to lurk around in my shadows, the dark spaces we spend most of our time burying with work, booze, meds, consumption, spectacle, and general busy-ness. We all have our own way of hiding from these parts of ourselves—the bits we’ve unconsciously rejected or abandoned when we adopted the traits and behaviors that parental figures, peers, teachers, and other social structures reinforced and rewarded as more “favorable” ways of performing. I’ve found this work to be helpful in understanding the roots to which many of my reactive tendencies are

It’s a small moment that marked the formalization of a journey to Self that had already begun. The self-disappointment I felt that morning was really my recognition that “slowing down and taking stock” hadn’t magically reigned in my tendency towards “too-muchness,” which often functions simultaneously as both catalyst and coping mechanism for stress, anxiety, loneliness, and anger. For whatever reason, these 14 sadhana became the basis of my spiritual discipline: the keys to my new universe; to balancing Doing and Being, my Too-Muchness and

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tied. Essentially, we learn to receive love and approval through our own self-de nial, completely unaware that’s what we are doing. There is salvation in the looking, in observing our internal worlds, in “an examined life,” as Baldwin said. In my own practice, my curiosity about the darkest parts of myself illuminated the myriad storylines I had long bought into, the attitudes and beliefs I had let define me and my actions. Sometimes it’s embarrassing to realize just how often our past humiliations, little-t traumas, or our nine-year-old selves still undergird so many of our communicative tendencies and interactions. This understanding has helped me get down to the work of healing the wounded parts of me that trigger my ego and its reactive tendencies. How often had I been projecting my own insecurities, my own ego, onto others in order to blame them for making me feel a certain way? These were extremely uncomfortable realizations, but they were parts of myself I had to accept and forgive with a bit of lovingkindness. At the same time, their exposure also revealed I had been living by narratives that I can, in fact, control. This is an ongoing process, a constant gardening of the soul. Replant the roots, give birth to something new.

A politics of love imbricates the personal and political, which sadhana invites by opening the self to mindfulness, meditation, self-reflection, or other modes of inquiry that encourage you to see yourself as part of the bigger picture. The inner work we do doesn’t end inside us; it extends into and beyond every relationship we have, even into the broader community at large. This kind of self-work is ter rifying; we will do anything to avoid our thoughts, to self-preserve, and it doesn’t help that capitalism is built on the back of supplying the distractions. It’s no small aside that I also believe capitalism can’t be sustained by a population of conscious people interconnected through their minds, bodies, and hearts, but that’s an essay for another time. Self-inquiry as the basis for transformation happens when we start to look around and see that we aren’t actually all that different. While the contents of our thoughts and actions aren’t the same, we are similarly bound by our own ego stories, insecurities, and fears. There is something extraordinarily humanizing about seeing the self in others, although as I have come to learn, it’s much easier said than done.

From the Personal to the Political you do not have to be a fire for every mountain blocking you you could be a water and soft river your way to freedom, too. —“options,” Nayyirah Waheed

But there have been a few successes. Enacting a love-based politics has meant unlearning the tendency to be emotionally reactive towards people, issues, or events I find triggering. For one, learning how to pause and put a space between my thoughts and words, my words and actions, has helped me repair broken re lationships damaged by what Tara Brach (2020) calls “trance of bad Othering.”

Through this time, as if a test of its legitimacy, “Be Kind” kept tugging away. I had to accept how damaging my reactive and combative engagement strategies were when it came to important social justice issues, particularly in the relation ships I now felt committed to nurturing. I had to find a different way. I reached deep to put space around my thoughts, feelings, and words, and it took a lot of breathing (#3), journaling (#2), and bed-making (#1) to get there. Instead of lashing out or trying to convince my family for the millionth time they were on the wrong side of history, I mourned alone, reflected, donated, listened. In the weeks that followed, I had many challenging but surprisingly peaceful conversa tions with my sisters, brother, mother, father, and friends that did not intensify the anger or outrage we all felt, despite standing on opposite sides of the ideo logical sea. It became an opportunity to engage from a place of love, a chance to break the trance of bad Othering where everyone suffers and no one wins. The centrifugal rift that typically arises under heightened political tension be tween my family and myself still hasn’t happened, although it’s likely someday it will. But for now, our conversations have become more measured, authentic, and slower. By coming at them from a place of love I can connect to their hu manness through my own; I have a better understanding of the fears that drive their choices and who they are as people. I don’t know if they know I am speak ing to them from a space of conscious intention or not, but that isn’t the point.

All I know is that to date, one year on since making that list, there have been no more wars. To be clear, I’ve not “achieved enlightenment,” and I often don’t get things right. The journey is ongoing, and it entails hard conversations that acknowledge

I came to see how my ex-boyfriend’s terrible media choices weren’t actually a character flaw or sign of our incompatibility, but merely his way of distracting himself from the fears and anxieties we both shared about the world. I literally didn’t realize this, though, until I saw him through the lens of compassion. We have since rebuilt our friendship from a place of conscious awareness, and of the mutual promise of holding the other to account.

Kathleen M. in Biology and Medicine

Kuehn 382 Perspectives

At the height of the Black Lives Matter protests, unlearning reactivity meant sitting with the emotional conflict the protests created for me, looking inward to reassess my own complicity in systemic racism instead of pointing a finger at everyone else. I had long been an antiwar, anti-racism, and police brutality activist, the lone critic in a large conservative Irish Protestant family that flew a Blue Lives Matter flag off the front porch. My father, a retired New Jersey State Trooper, tirelessly sacrificed decades of exhausting labor to provide me with all the privileges that enabled my very resistance. (This remains a source of much internal conflict and guilt.) But what I have learned through all this is that two things can be true at the same time: I can honor my father’s story and we can exist on opposite sides of a political divide. As much as Floyd’s death made me want to distance myself from America and my family, it reminded me that the path to liberation doesn’t come via separation.

I’m reminded of a story I read last July that exposes how frightened we remain of our own vulnerability, despite its capacity to transform. When Japan’s Fuji-Q

You Must Change Your Life 383summer 2021 • volume 64, number 3 and make peace from my missteps. Post-lockdown it has been especially difficult to keep up with my sadhana practice; some days, between the traffic, work stress, and all the peopling, making the bed is the best I can do. It’s hard to have empathy when you’re exhausted, to act from a non-reactive, compassionate space when you’re strapped for resources. Setting boundaries (#14) has meant saying “No” a lot more than I’m used to, but I have to create as much space as I can so I can stay grounded enough to do the work. I acknowledge I have certain privileges that make this easier for me than others; but without dismissing this fact, it’s also worth remembering that many of the activists and spiritual leaders who insisted societal healing begins with the self—James Baldwin, Martin Luther King Jr., bell hooks, Jesus Christ—were individuals who were hardly “privileged.” Most expe rienced exceptional amounts of persecution. Yet liberation, they argued, begins when we turn to our own hearts to unpack our beliefs and interrogate what lies beneath. From this view, calling for solidarity in a global pandemic doesn’t mean we ignore difference, but rather that we recognize human suffering as the basis for our shared belonging.

The latter offers one way of extending compassion to the collective. This seems particularly important as public attitudes become increasingly negative, and as the shared weariness over the pandemic grows. In New Zealand, this neg ativity has played out in the recent vitriol directed at a South Auckland suburb, where community outbreaks forced two separate lockdowns of the wider region in the course of a month. Demands for “postcode lockdowns” and punitive mea sures against rule-breakers illustrate a growing discursive shift from kindness and togetherness to bitterness and individualized scapegoating. There is a discrimina tory subtext to this discourse, as well: the suburb also happens to be an ethnical ly diverse, working-class community of predominantly low-waged workers in public-facing essential service jobs (such as food factories and supermarkets). Few might realize, however, that the socioeconomic realities for many of these resi dents means that, as one local doctor put it, “COVID just is not the biggest thing that is happening in their lives” (Franks 2021). She pointed to the way that lan guage barriers, health literacy, financial struggles, a family’s dependency on subsi dized school meals to feed their children, multi-generational living arrangements in cramped quarters (as in 10 people in a two-bedroom flat) all make self-isolating at home a lot less simple than it was for me. Rather than assuming noncompli ance is a matter of bad people doing bad things, we might instead consider how the myriad inequalities undergirding their choices are vastly different from those that undergird our own. Might we rethink our reproach by remembering what it’s like to be broke, hungry, stressed, constricted, fearful, ashamed, and then hold compassion for the wider collective from this more vulnerable space? There are likely blind spots in my thinking, but a politics of love seems to start from this point. It can feel impossible, but it’s work worth doing.

At the risk of over-intellectualizing the memeification of “Please scream inside your heart,” the aphorism seems more like an outdated slogan from the neolib eral milieu than one defining the contemporary moment. If locking away our fears, desires, and emotions is what keeps us safe in the context of multiple global pandemics, then what has really changed? Perhaps we stay locked inside our hearts because to do otherwise feels threatening, destabilizing. But look around! Nothing here is stable, permanent, and it never was. When we grasp and cling to our rightness against others’ wrongness, to the storylines that keep us small, to our fears of a future we can’t control, we deny the truth of impermanence, searching aimlessly instead for stability in uncertainty, to feel grounded amongst the unknowns. We define ourselves in opposition to “bad Others,” rather than seeing that they are acting from the very same fears and uncertainties as we are. No wonder solidarity seems so elusive.

Keep Doing the Work

In the context of multiple ongoing pandemics, the world feels a bit more broken than it did when COVID first arrived. We need to get down to the business of healing. We need more hearts to crack open if we are to have any hope for repairing the broken promises of democracy in a post-pandemic world. Yet the responsibility is twofold: to unpack our own inner worlds, and to recognize we have an obligation to a world beyond our own self-interest. A politics of love

Kathleen M. Kuehn Perspectives in Biology and Medicine

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Keep breaking your heart until it opens.—Rumi

As James Baldwin wrote in Nobody Knows My Name (1961), “real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety” (209). Surrendering ourselves to the task of personal transformation destabilizes much of what we thought we knew about ourselves—who we are, our priorities, our privileges, who we want to be, and how others fit in relation to those things. In peeling back the layers of our consciousness we let ourselves see where we bought into beliefs or values about power, scarcity, and self-interest that have never placed love at the forefront of how we move in the world. It is then for the sake of our own spiritual freedom and the freedom of others that, as Brach (2020) advises, we “ground our efforts in our caring for life, in our caring for the greater good.”

amusement park reopened post-COVID, management instituted a new set of health and safety rules that forbade patrons to make noise on its rides. The new mandate enjoined riders to “Please scream inside your heart” (Horn 2020). The story went viral alongside a video featuring the park’s executives “enjoying” the rollercoaster’s twists and turns in a totally expressionless manner. The internet declared it as 2020’s unofficial mantra, a tragic demonstration of what the “new normal” looked like in an utterly abnormal world.

It can feel like individual efforts have only marginal consequence to the in equalities and injustices marring a post-pandemic world. At the time of writing, more people have died from COVID-19 in the nursing home where my sister works (30) than in all of New Zealand combined (26); more members in my immediate family have caught and recovered from COVID (3) than anyone I personally know here (0). The fact that I have only worn a protective mask once through this whole ordeal—just three days ago—is also a stark reminder of the small disruption this pandemic has had on my life compared to most. I don’t know that being a more conscious adult changes the fact that Japan has employed a “Loneliness Minister” to deal with its rising suicide rate, which in 2020 took more lives than COVID-19, and I certainly can’t stop the effect that “vaccine nationalism” is having on poorer nations. But I do know I’m changing the im mediate world around me, and for now, that’s the best I can do.

The silence and solitude of lockdown’s unknowable and unstructured time line provided me with the time and space to figure out how I can live a life that centers love, kindness, and compassion. It shouldn’t have taken a global health pandemic, but it did. The opportunity to slow down let me sink into a daily sad hana practice that taught me that a life committed to love and kindness requires actively taking space, setting clear boundaries, letting go, and striking a balance between Doing and Being. It will be an ongoing journey to keep catching my self in ego, to identify my triggers, and to just be with myself and know that I’m enough; to be kind, to foreground love, and not lose my mind when triggered by other people’s choices. It will mean continuously reigning in my pandemic grudges and frustrations by looking out at the bigger picture. But I have also learned that it’s a lot easier to have compassion for others when I’m connected to, and holding compassion for, myself—even when I fail. As Taylor (2018) re minds, “We must learn to be with each other if we plan to get free. . . . Without compassion for ourselves we lose the plot; without compassion for others, we merely reproduce the world we’ve always known” (93). It’s so much easier to be angry, unconscious, reactive, and distrustful when faced with these facts, or as the lockdowns continue. Even now on certain days—sleepy days, lazy days, days where there’s just so many other things to do—I find myself letting autopilot take over and fall right back asleep. But then I remember and get back to the work. And then I forget. I remember, I forget. I do the work to keep remembering.

You Must Change Your Life 385summer 2021 • volume 64, number 3 makes clear that our liberation is inter-subjective: my freedom is bound to yours, and yours to mine. If true societal healing is rooted in the realization of our shared belonging, then it is only by awakening to our own hearts that we can transmute the structures and systems that have been imprisoning us from one another—and ourselves—in the first place.

The Force of Kindness: Change Your Life with Love and Compassion. Boul der: Sounds True. Schwartz, L. 2008/2009. “A Conversation with Michael Hardt on the Politics of Love.” Interval(le)s 3 (1): 810–21. Taylor, S. R. 2018. The Body Is Not an Apology: The Power of Radical Self-Love. Oakland: Waheed,Berrett-Koehler.N.2013.“options.” In salt. San Bernardino, CA: Nayirrah Waheed.

386 Perspectives in Biology and Medicine References

Ardern, J. 2020. “PM Address—COVID-19 Update.” NZ Government, March 21. Baldwin, J. 1961. Nobody Knows My Name: Collected Essays. New York: Library of Amer ica, 1998. Brach, T. 2020. “Awakening to the Trance of Bad-Othering.” Tara Brach.com, Sept. 9. Cherelus, G. 2020. “‘Dead Inside’: The Morgue Trucks of New York City.” NY Times, May Chodron,27.P. 2016. When Things Fall Apart: Heart Advice for Difficult Times. Boulder: Shambhala Press. Franks, J. 2021. “COVID-19: Papatoetoe Community Speaks Out Against ‘Regional Profiling’” Stuff, March 3. Hooks, B. 2001. All About Love. New York: HarperCollins. Horn, A. 2020. “‘Please Scream Inside Your Heart,’ Japanese Amusement Park Tells Thrill-Seekers” NPR, July 9. New Zealand (NZ) Immigration. 2021. “Healthcare.” New Zealand Now. https://www. Salzberg,newzealandnow.govt.nz/living-in-nz/healthcare.S.2005.

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Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 387. © 2021 by Johns Hopkins University Press 387 NZ COVIDAnnemarieDiaryJutel

Victoria University of Wellington—Te Herenga Waka New Zealand. Email: molly_robson@hotmail.com. Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 388–407. © 2021 by Johns Hopkins University Press 388 Intimacy in Isolation

podcasting, affect, and the pandemic

Molly Robson

On Monday, March 24, 2020, I went for a walk by myself to the waterfront of my flat’s suburb in Hataitai, Wellington, New Zealand. The Prime Min ister, Jacinda Ardern, had just announced the complete lockdown of the country to slow the spread of the COVID-19 pandemic, effective at midnight the follow ing Wednesday. Watching Ardern somberly tell the nation through a Facebook Live stream that “tens of thousands of New Zealanders could die” was a visceral experience. The worry we had all been carrying for the last week, the tangible energy on the streets and in the supermarkets, was becoming actualized in real

ABSTRACT Using close interviews with podcast listeners conducted between July and September 2020, this essay explores the affective role podcasting played for listeners during the COVID-19 pandemic. For some participants trapped indoors due to COVID restrictions, podcast hosts became like friends, providing feelings of social ity in a physically distanced landscape. Furthermore, through their on-demand, con verged, and idiosyncratic features, podcasts created mediated opportunities for agency for individuals bereft of their usual mobilities and freedoms, which provided a kind of affective agency that helped listeners make sense of the crisis. This essay argues that podcasting’s overriding value—both in the pandemic and contemporary life—lies not necessarily in its unifying properties, but in its individual affective impact.

Aural media has historically played a significant role in times of crisis. According to Alex Goody (2018), in the early years of the Second World War, BBC radio drama was a crucial vehicle for articulating a sense of national unity and present ing a counternarrative against Nazi propaganda. In her article “BBC Features, Radio Voices and the Propaganda of War 1939–1941,” she argues that the blind format of the medium raised important political and moral questions in a time of national despair:

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389summer 2021 • volume 64, number 3 time through a social media interface. During my walk, I listened to the podcast Boners of the Heart by New Zealand comedians Alice Sneddon and Rose Matafeo. Their approach is light-hearted and relaxed—an unscripted, back-and-forth chat between two friends. The episode “Boners of the Quarantine” had been released just a couple of days prior, and in it Sneddon and Matafeo—stuck in isolation together having recently fled home from the UK—chat candidly to one another about the crisis, cracking jokes about the terrifying and absurd nature of current affairs. As I walked along the harbor with my headphones on, the familiarity of their voices, accents, laughter, inside jokes, and candor offered me a feeling of welcome relief in a time of deep uncertainty. I came home feeling lighter. This essay explores the experience of mediated affect occurring in moments like this. Affect refers to the “visceral forces beneath, alongside, or generally other than conscious knowing, vital forces insisting beyond emotion” (Gregg and Sei gworth 2010, 1). In my research on podcasting, I have sought to understand the affective dimensions of the medium, and to achieve this, I conducted in-depth interviews with seven podcast listeners between April and August 2020, focusing on their personal experiences, practices, and engagement with the podcasting medium. This period of time was an unprecedented moment in history for ob vious reasons, and the pandemic shaped listeners’ experience with podcasts in unique ways. This led me to consider the role that personal media technologies, such as podcasts, might play in a crisis context. How do we employ different me dia to feel comforted, safe, and connected during times of uncertainty?

Several participants reflected about how they used podcasts to fill the pandem ic-sized hole in their everyday social lives. This article presents a critical analysis of how podcasts can be wielded as tools of self-mediation in individual efforts to negotiate emotional needs during a time of crisis. Thus, the article both helps to illuminate podcasting’s contemporary identity as a medium and offers qualitative insight into the process and function of mediated affect in a global crisis. I argue that the intimate, on-demand, and idiosyncratic dimensions of podcasting afford ed listeners opportunities for dependable, free, customizable sociality in lieu of their “normal” lives.

Aural Media and Crisis

Molly Robson 390 Perspectives in Biology and Medicine

The hazards of a disembodied aural presence that could engender physical, per sonal emotions in listeners, generated particular issues as BBC wartime features developed and sought to dramatise contemporary events and actual people. As a result, whilst producing programmes which could bind the nation together in opposition to Nazi Germany in the opening months of the war and as British military campaigns escalated across 1940, the BBC Features Department also had to pay careful attention to what their radio voices might embody for and in their listeners. (195) With its television service closing down at the outbreak of the war, BBC Radio was reconfigured to “adopt a new culture and outlook” that was “more powerful than ever” (BBC 2021a). As communications professor David Hendy observes, “The BBC saw one of its main wartime missions as nurturing civilian morale in the country at large” (BBC 2021b). One notable program to emerge from this shift was Desert Island Discs. In 1943, Roy Plomley invited celebrities into the bomb-damaged Maida Vale Studios, where guests would imagine they were cast away alone on a desert island and discuss the eight gramophone records they would choose to have with them: “assuming of course, that you had a gram ophone and an inexhaustible supply of needles” (BBC 2021c). Though initially born of “the BBC’s effort to make life during wartime slightly more bearable,” the program achieved iconic success, and thus continues in broadcast and pod casting format today. In his New Yorker piece about the program, Hua Hsu (2020) describes the “romantic” escapism such a listening experience afforded citizens during the war: “It was a way to insure that not every waking second of life was lost to worry. The conversation was scripted and polite, and one imagines that guests were encouraged to offer selections that would make listeners feel opti mistic or proud.”

The morale-building function of radio is also well documented among schol ars. In 1941, James Rowland Angell located radio’s unifying potential in three key features: its ability to blend the emotional with the intellectual; the ease with which one can “tune in” and consume radio content; and the simple fact that radio’s messages are carried by the human voice. He wrote: Again, as compared with the printed page whose meaning is taken in by the eye, radio with its transmission of the living human voice enjoys with most listeners a great psychological advantage. This is under ordinary conditions less significant in the mere communication of news, but when a great personality speaks on an issue of current moment, the effect as compared with the reading of the address at a later time is generally far greater. That the speaker is at a dis tance, possibly half around the world, that the voice conveys a sense of sincerity and integrity (if it does), makes an appeal that the printed page simply cannot equal in the case of most persons. (352)

These accounts of sound technologies and crisis provide evidence of the rich function that sound and auditory technologies serve in times of upheaval, thereby challenging what Bull (2003) describes as “assumed supremacy of the ‘visual’ in accounts of the social” (3). They also provide helpful context for considering the role that podcasts have served in the contemporary pandemic. Podcasting can be characterized as the latest, most significant development in auditory technology, or as Llinares, Fox, and Berry (2018) describe it: “a medium that has now reached

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This excerpt speaks to the affective and unifying power of the human voice. The importance of orality and sound is now widely acknowledged by researchers, and the recent proliferation of sound recording technologies has made it easier than ever to access and convey information through the medium of sound. However, it is important to remember that sound technologies can be equally powerful instruments in displacing bodies, as well as inspiring unification. In Sonic War fare: Sound, Affect and the Ecology of Fear, Steve Goodman and colleagues (2009) provide a thorough historical account and analysis of what they call “sonic war fare”: “the use of force, both seductive and violent, abstract and physical, via a range of acoustic machines (biotechnical, social, cultural, artistic, conceptual) to modulate the physical, affective, and libidinal dynamics of populations, of bodies, of crowds” (10). From the sense of dread induced by low-frequency drones, to high-frequency mosquito “machines” designed to disperse teenagers in antisocial crowds, the authors offer a comprehensive map of the ways in which acoustic technologies are deployed to induce an ambience of fear. Sound technologies can also be an instrumental tool for capturing the essence and urgency of contemporary crises. According to an article in The Outline, a new crop of sound engineers are using music and soundscapes to produce ecological knowledge and document the “mood” of modern-day environmental anxiet ies (Gordon 2018). For example, sound artist Anja Kanngieser explores climate justice through their work, which “encompasses oral testimony, field recording and data sonification to amplify climate justice issues, weaving a narrative around the people and soundscapes of the Pacific.” Other artists, such as Saplings, Loose Blooms, Björk, and Anohni, use soundscapes to actively engage with pressing ecological issues. More recently, British composer Pete Sollery (2021) created a “COVID-19 sound map” in an attempt to “preserve the temporary sounds of lockdown for the future, while, at the same time, “encouraging people to really listen.” His project brings together citizen-submitted sound recordings from across the world during the pandemic, including urgent loudspeaker an nouncements at an unusually vacant Barcelona airport, vibrant birdsong in pop ulated urban areas, and the grain of digitized voices reciting the Lord’s Prayer via the video-conferencing platform Zoom. Sollery encourages us to “listen to the sounds around us” and “enrich our lives in a post-lockdown world—by seeking out these sounds which brought us comfort and by keeping our ears open to experience fully the soundscapes we live in.”

Molly Robson 392 Perspectives in Biology and Medicine

a watershed moment” (6). Podcasting’s internet-born identity shapes its uses in the pandemic in ways that illuminate the dominant desires underpinning media use more widely. Using past studies on aural media, crisis, and affect to contex tualize my participants’ responses, I argue that podcasting supported individuals both affectively and ideologically in their efforts to manage and succeed under the crisis. For most participants, podcast hosts became like “friends” to listeners suddenly trapped in lockdowns, performing a compensatory social function in a time of collective chaos. Furthermore, through their on-demand, converged, and idiosyncratic features, podcasts created mediated opportunities for agency for individuals bereft of their usual mobilities and freedoms. This provided a kind of affective agency that helped listeners make sense of the crisis via the conversations of distant, yet familiar, others.

At the time of our meetings, all interviewees had experienced some form of lockdown over the recent weeks and were subject to varying degrees of social restrictions in their area at the time of the interview. When I asked participants to describe what they had been experiencing since the pandemic began, key themes to emerge were feelings of uncertainty and anxiety over the effects of long-term social deprivation caused by lockdowns and quarantines. Participants’ personal devices became a key tool for negotiating these challenges, and the majority of

Media Use in Social Isolation

Data for this study was attained through a series of in-depth interviews with seven regular podcast listeners. Interviews were conducted in the months between June and August 2020, at the height of the pandemic’s outbreak. Participants were recruited through two closed Facebook groups: The Bobo & Flex Show and the RNZ Podcast Discussion Group. These groups are online spaces to discuss pod casting content and debate relevant topics. While the Bobo & Flex Show group is mainly limited to the audience of that podcast show specifically (with approxi mately 17,000 members), the RNZ Podcast Discussion Group hosts conversations on all sorts of programs, although it is significantly smaller in size (2,400 active members) and sees less activity day-to-day. Selected participants reflected a young sample group, with most participants in their mid-to-late 20s, except for one participant who was in their 50s. At the time of the interviews, five participants were living in New Zealand, one in England, and one in Australia. Collectively, the sample reflected a range of ethnicities and gender identities. All participants considered themselves moderate-to-heavy consumers of podcasts and were moti vated to participate by an intrinsic interest in the topic of the research. Interviews were conducted over Zoom—or in person, where possible—and lasted between 45 minutes to 1.5 hours. I have created pseudonyms to protect the identities of participants, but relevant details pertaining to their demographic, occupation, and media consumption practices are the same.

participants reported a significant increase in their general media consumption since the pandemic started. One participant, Cassie, described the fear of “not knowing” when restrictions would be lifted in Melbourne:

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There’s just been absolutely no indication whatsoever of when this lockdown’s gonna be lifted. We’ve just been hearing rumours that it’s probably going to be extended, or like, we’re not going to lift restrictions until we’re down to like zero cases, which is going to take a while. I think there’s a lot of uncertainty in that realm. And I do think that podcasts, but also like all the media that I’ve consumed in general, has been, like, soothing Most other participants reported listening to more podcasts since being in lockdown, too. Taylor, a London-based trust-officer in her early 20s, described podcasts as serving a “comforting” function in her life in social isolation: “they’ve been very soothing, comforting, and allowed you to just continue listening to di alogue in your life.” She characterized the beginnings of the pandemic and subse quent quarantine as “incredibly bleak,” and admits that she struggled to grasp the full severity of the pandemic for a couple of months. It wasn’t until they were in the thick of the lockdown that she realized “I needed to do stuff to actually help myself, during this time, otherwise I will go insane.” She started getting into “all the lockdown activities, like yoga and baking,” and developed a weekly routine around podcasts to help find a sense of normalcy in her days: I definitely have started listening to more podcasts than before, and yeah, I have some sort of routine, I have podcasts that I listen to every week when they come out in the morning. So yeah, my listening habits have definitely changed, and gone up massively. Before I definitely did love a podcast, but I didn’t really listen to them as much as I do now, and yeah, I think it comes from us being stuck indoors and not really having too much to talk about. . . . Obviously, with lockdown happening, not having friends around, not seeing people as much, you’ve been yearning for that conversation, and that dialogue between people. So that routine definitely came out of quarantine, my listening has gone up since then. And I’d say that’s because I just miss my friends, and I miss that conversation as well.

Similar themes were evident in other participants’ responses. In Olive’s inter view, she described the lockdown experience as “tedious” and “long,” having spent the period living in her parents’ house, completing her university semester from a laptop. Podcasts offered her respite from using screens all day for her as signments, as well as an opportunity to hear the voices of others outside of her immediate domestic context: With podcasts, I was definitely listening to more [during lockdown], ’cuz I kind of realised I wasn’t having many conversations with people, I was kind of being

It stands to reason that populations under stressful conditions might turn to me dia to cope with their feelings of loneliness, anxiety or isolation. As Horton and Wohl stated in 1956: “nothing could be more reasonable or natural than that people who are isolated and lonely should seek sociability and love wherever they think they can find it” (223). Podcasting’s well-established properties of “intimacy” imbue the medium with an especially attractive social function in this new landscape. In the following analysis, I explore how the unique properties of podcasting made it a valuable tool through which participants negotiated these changes in their social worlds.

It’s clear from our data that morning routines have changed significantly. Ev ery day now looks like the weekend. This trend was seen more significantly in Podcasts than in Music, likely due to the fact that Car and Commute use cases have changed quite dramatically. However, listening time around activities like cooking, doing chores, family time, and relaxing at home have each been up double digits over the past few weeks. Audio has also taken on a greater role in managing the stress and anxiety many are feeling in today’s unprecedented en vironment. (Spotify Investors 2020)

exposed to new ideas, or at least new thoughts. Like, you can kind of just like listen to what other people are thinking . . . . There was definitely a craving for, like, hearing people that weren’t my family. I think that definitely fulfilled that sort of desire for like, fresh perspectives, and with my family it kind of just be came: “how’s your day going?” and because we’re in the same room, it just be came tedious. So yeah, I think it definitely filled that sort of desire, like “I need to hear—and not necessarily have interactions—but at least hear other people having interactions.” And even like, saying words I haven’t heard today, I felt like I was getting into a really weird pattern and cycle of articulation, so it was cool to have something that shifted me out of that. It’s like a form of escapism. These responses speak to the vital social role podcasting played for them in the pandemic, serving as a kind of compensatory tool for isolated individuals in lieu of their face-to-face networks. Statistics about global podcast listening during the pandemic support this finding. Studies have revealed that though audiences ini tially veered away from podcasts at the onset of the coronavirus outbreak, listen ing has largely increased in the months since (Amburgey 2020). Voxnest reported a 42% increase in global podcast listening since March 2020, and in an October survey by Trailer Park in collaboration with Variety Intelligence Platform, 52% of respondents said they were listening to podcasts “much more” or “a little more” since the pandemic began (Amburgey 2020). Spotify has also reported a steady growth in podcast listening on their platform, but due to changing com muting practices, noticed a shift in temporal trends of listening:

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When I asked if she felt familiar with the podcast hosts that she listens to regular ly, she replied: “Yeah, heaps . . . I’m in my room, by myself, and I listen to the girls from I Said What I Said [podcast], and I’m like: ‘Ah, yes, my friends!’ It defi nitely has that familiarity, and also, comfort, I guess?” Taylor spoke with equal affection towards her favorite podcast hosts. Through repeated exposure to the same voices, and the continual self-disclosure evolving from such conversations, she felt that she had come to “know” her favorite podcast hosts intimately and that she nurtured an ongoing, dependable (albeit unrequited) bond with them: You start to build a relationship. Especially with Bobo and Flex, that kind of conversation. You really get to know them, and you get to understand why

Parasocial Phenomena and Podcasts

Hartmann’s definitions are startlingly consistent with the ways in which par ticipants in my interviews described their own relationships with their favorite podcast hosts. For example, in Olive’s interview, she laughed about how she had recently caught herself accidentally referring to her favorite podcast hosts as “friends” in conversation, despite knowing it was not an accurate assessment of theAndrelationship:thenIwas like, no no, he’s not like my friend, but he’s just someone that’s kind of entered the fold of my life—[air quotes] “to me”—in such a way that feels like a familiar face. Like, it really feels like someone who is really trying to engage with me, and trying to explain things clearly and lucidly.

Olive’s response here fits neatly within Hartmann’s definition of a parasocial interaction: “users intuitively feel addressed by the other . . . [feeling] a sense of mutual awareness, attention and behavioural adaptation towards the other—al though these reciprocal qualities do not actually exist” (131–32). Other partici pants I spoke to were keenly aware of the fact that the feeling of mutual friendship was largely illusory, but enjoyed the fantasy nonetheless. Rosie, a 22-year-old linguistics student from Wellington, expressed similar feelings in our interview.

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Emerging literature is already beginning to explore the role that digital me dia has played in the lives of populations enduring long-term lockdowns from COVID-19, with increasing interest turning to the correlation between paraso cial phenomena and mass social-isolation (Jarzyna 2020). Theories of parasocial phenomena offer a valuable lens through which to analyze how podcasts have assisted listeners during quarantines and lockdowns. According to Tilo Hartmann (2016), parasocial interaction “deals with users’ immediate illusionary feeling of being in a real social interaction with a media character, despite knowing that they are not” (131). Similarly, a parasocial relationship is when users, through repeated exposure, “develop a long-lasting social bond and sense of intimacy and proximity towards [media personalities], almost as if they were real friends” (131).

According to Perks and Turner (2019), the kind of self-disclosure that Taylor describes is central to parasocial phenomena. It is worth noting how the conver sational structure of many podcasts fosters heightened emotional intimacy. Un like other audio formats such as radio, podcasting hosts know that their audience has actively chosen to tune in, and they therefore might feel more liberated to express their vulnerabilities with their audience. According to podcasting scholar Mikhaela Nadora (2019), when media personalities disclose personal admissions to their listeners, it “enhances their feelings of connectedness, and their abili ty to identify and cultivate intimacy with them” (10). In a similar vein, Cassie described the bond she formed with Bobo from The Bobo and Flex Show, after listening to an episode she resonated with deeply: “Now it kind of feels like . . . like I know we’re not actually friends, but it does feel like I have new ‘friends,’ or just people in my life that I can talk about these subjects with. And so that feeling was really moving to me.”

These responses show some strong consistencies between parasocial phenom ena and podcasting practices, both in format and consumption. The question, then, is how might the newly restricted social landscape of the pandemic have shaped these practices? A valuable perspective is offered by the “compensation hypothesis” in parasocial studies, which asserts that parasocial relationships may compensate for a lack of social benefits usually acquired in real-world relation ships. Numerous studies on parasocial phenomena strongly support this hypoth esis. For example, Greenwood and Long (2009) have found that “the experience of solitude as the ‘absence of valued others’ particularly predicted parasocial in tensity” (cited in Hartmann 2016, 136). Baek, Bae, and Jang (2013) found that loneliness was a strong indicator of the number of parasocial bonds formed with celebrities on social networking sites. Furthermore, social-psychological studies have examined whether parasocial bonds can in fact bolster against the effects of social isolation or loneliness, concluding that such mediated bonds “can provide social support . . . and shield against or diminish the effects of social exclusion and loneliness,” and thus appear to be at least partially successful in compensat ing one’s “thwarted need to belong” (Hartmann 2016, 137). These studies help to elucidate the recurring themes of affection, friendship, and familiarity that arose in my interviews. Looking at participants’ responses within these parasocial frameworks helps us to understand more clearly the intensity of the bonds listen ers felt with their favorite podcast hosts.

Molly Robson 396 Perspectives in Biology and Medicine they say or do certain things and the reasoning behind them, and they talk about that as well . . . it’s getting to know someone without them knowing you, and them giving you access to so much of themselves.

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Having established podcasting’s potential as a vehicle of parasociality, it is im portant to understand how precisely such relationships take shape through this aural medium. What are the characteristics of podcasting that make it socially gratifying? What distinguishes it from other media in this pursuit? And in what ways do these features support listeners in their efforts to manage under pandem ic conditions?

Autonomy, Identification, and Wellbeing

One participant I interviewed, Gen, offered up a short anecdote that I think speaks to podcasting’s widespread appeal in the COVID-19 era. Gen grew up listening to the “crackling radio” in her parents’ car on long road trips. Now 53 and a self-identified “podcast fanatic,” she appreciates the personal sense of freedom podcasts provide: My parents were big radio listeners, musical people. And so we either had mu sic blaring away, or news bulletins. And I remember that as a child, the crack ling radio with the car and the aerial, and in those days it wasn’t electric aerial. With the radio, you couldn’t really capture it, unless you went to the trou ble of recording something with a cassette player to set up, you couldn’t hear it again. It was once. And there was no replay . . . so radio was real time. Podcasts are brilliant because you know what you’ve got, and you can listen to it when it suits you, so like “10pm: listen to a podcast.” You can plan your day and incorporate podcasts. Whereas when I was little, you had to base things—and your family had to base things—around something on the radio. So, radio is a moment in time, and the podcast is something to take along for the ride. I real ly like the podcast for that. This contribution from Gen gets to the core of podcasting’s appeal as an “em powered” medium, which allows the consumer to define and enact their own agency freely, whether through the “time-shifting” playback features of the streaming platform itself or the huge swathes of content available on increasingly niche topics (Sullivan 2018, 38). As Gen notes, contrary to the linear, scheduled programming of radio, the portable, idiosyncratic properties of podcasting facili tate unparalleled “autonomy and agency over one’s mediated self” (Llinares, Fox, and Berry 2018, 3). These affordances fit into a burgeoning trend in digital media at large, which grants the user increasing control over their own consumption experience.However, even when considering examples of other consumer-driven pro gramming, like Netflix, freedom of choice is still bound by the commercial purchases of that platform, and users must pay a monthly fee to maintain their subscriptions. By contrast, as Nadora (2019) describes, the autonomy offered through podcasting is a “defining advantage” of the medium at large, on both ends of the communication process: in the amateur-friendly production culture and in the autonomy listeners are given to curate their personal listening diets for no mandatory cost, and at their own will (7). Nadora explains:

“In crisis,” Berlant (2017) writes, “we improvise like crazy, where ‘like crazy’ is a little too non-metaphorical. Plus, when a crisis is ordinary, flailing—throwing language and gesture and policy and interpretations at a thing to make it stop— can be fabulously unimaginative, a litany of lists of things to do, to pay attention to, say, to stop saying, to discipline and sanction.” In other words, during times of deep uncertainty, humans will reach for varied demonstrations of self-autonomy and self-determination to sustain fantasies of control and security. For partici pants, podcasting offered a safe, dependable, free, and instant means of exercising suchForcontrol.several

Participants would often select podcast hosts with whom they could identify and relate—people they could imagine befriending in social reality. For example, Taylor told me she listens to a range of genres but tends to “take the women and female-led podcasts more seriously.” Similarly, Cassie told me a part of the rea son she started listening to programs like Bobo and Flex was because she “wanted to listen to more podcasts hosted by women.” As an American woman living in Australia, she was recommended the podcast by a friend, and immediately found herself obsessively bingeing the episodes: “[she] was like, ‘Have you heard of Bobo and Flex? One lives in America and one lives in Australia.’ And I was like, ‘Oh, that’s so cool, I’ll probably resonate with some of the things they say.’ And I’m obsessed with it now, so yeah.” Moreover, Bobo and Flex spoke from a lens of experience that Cassie found affirming to her own identity as a woman of color: “Bobo and Flex talk about very personal topics that a lot of people can just relate to, especially like if you’re a woman or a person of colour, or both.” Rosie told me that she didn’t feel her podcast consumption had challenged much of her preexisting views, laughing: “I already came to the podcast being a feminist, being a little leftist hippie, so I don’t know.”

Answers from other participants revealed that despite sometimes feeling chal lenged by the hosts or the content itself, this self-reflexivity helped to affirm their personal identities as progressive, critical thinkers. For example, Leo explained

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Curation is an essential trait when closely interacting with podcasts and utilizing the autonomy offered by them. Without it, listeners may lose interest and con centration and tune out. Curation is a personalized experience. Because listeners want to choose how and what to spend their time on, their feed is self-sched uled and self-selected. (6) These affordances, I argue, take on a renewed function in a pandemic context.

participants, this freedom allowed them to construct a sense of “cultural safety” in their media consumption, a concept defined by Williams (1999) as “an environment, which is safe for people; where there is no assault, challenge or denial of their identity, of who they are and what they need. It is about shared respect, shared meaning, shared knowledge and experience, of learning together with dignity, and truly listening” (213). For my study partic ipants, this was revealed to be an important value in deciding what to listen to.

Intimacy in Isolation 399summer 2021 • volume 64, number 3 that as a White person, they used podcasts as a way to gain insight into the expe riences of marginalized communities and evaluate their own identity in the pro cess: “I do my best to be, you know, a progressive person who understands from others perspectives, and I guess that’s the point . . . to kind of have your own perspectives challenged, and decide whether it’s something you want to learn from, adapt and kind of integrate into your own. So, [my podcasting diet] fits my political compass by challenging it.” Similarly, Olive explained that the podcasts she listens to have helped her to be more self-reflexive and challenge personal biases: “the podcasts that I’ve listened to have put me in spaces, like audio spaces, that I wouldn’t have been in otherwise . . . you kind of do feel like a fly on the wall and a part of a conversation . . . . It can definitely expose you to scenarios and conversations that you wouldn’t necessarily be in otherwise, or questions that are maybe really hard to ask people, that could be quite invasive.” Such responses speak to the self-reflexivity underpinning much podcast consumption. Even when a listener does not share the personal experiences of the host or subject in question, the feeling of being involved (albeit passively) in the conversation can serve as an affirmation of one’s existence, beliefs, and worldview. As Olive later told me: “It is a privilege to listen to those frank and candid interactions, especially between two people like them who gel so well in conversation. There’s a lot of chemistry, which is really cool to listen to.”

Correspondingly, many studies of parasocial relationships have found identifi cation to be a key indicator in predicting the intensity of parasocial phenomena.

Perks and Turner’s (2019) study on uses and gratifications of podcasts found similarities with hosts to be a defining theme of parasocial development: “commonalities between host and listener can present invitations for intimacy” (110). Additionally, they found that parasocial connections were often powerful enough to keep some listeners consuming the content, even if the substance of the topic was not interesting to them. This last finding helps to elucidate the soothing properties of podcasting that many participants reported in my interviews. Listening to voices that one registers as familiar serves a ther apeutic function, allowing users to “remain unaffected in changeable, stressful, and distracting environments” (Hagood 2019, 3). This feeling alone can be more enjoyable than the content itself, a claim that is demonstrated in one of Rosie’s answers: “You’re used to the voices. I find the first couple of episodes always take a bit of getting used to, and navigating the voices. But once you’re familiar with them, it’s really nice.”

With podcasting, feelings of identification are amplified for additional reasons. Producing a podcast is often an independent venture, with minimal barriers to

Horton and Wohl (1956) argued that the strength of a parasocial interaction is positively related to their ability to identify with them. Tian and Hoffner (2010) similarly found a “significant positive predictor of both identification and paraso cial interaction, and identification was associated with higher levels of parasocial interaction” (250).

First, the social interactions an individual engages in should ideally be pleasant, but should definitely be devoid of conflict or negative affect. Second, these social interactions should take place in a relational context, characterized by an existing interpersonal bond or relationship with the other that is marked by sta bility, [mutual] affective concern, and continuation into the foreseeable future.

Hartmann(131) argues that these desires can be partially fulfilled through parasocial relationships with “mediated others” and can become stronger when particular conditions limit the possibility of face-to-face socialization. Several factors render podcasts an especially successful medium in satisfying this desire, factors that can

entry compared with other top-down industries such as radio, television, or film.

Podcasting’s relatively “open, accessible and democratising internet distribu tion” means that everyday people from a variety of cultural perspectives flood the production sphere, imbuing the medium with a “powerful ethos of authenticity” (Heeremans 2018, 58–59). This affordance might partially explain the safety par ticipants reported feeling while listening to their favorite programs. As Llinares, Fox, and Berry (2018) put it: “No matter how deep or obscure your interests are, there is a podcast for you, or there is (relatively) little stopping you making your own” (2). The widely touted “‘radical subjectivity” of the medium extends such freedoms not only to content (topics, genres, interests, style, fandoms, style) but to subjective experience itself. As past studies on radio and crisis have demonstrat ed, the amplified voice is aurally coded by a range of identity signifiers: it serves as an unscripted transcript of human experience that has the capacity to “pow erfully pull us backward and forward through our own memories, thoughts and feelings” (Copeland 2018, 212). The aural delivery of podcasts is important here, setting it apart from visual media. As Stacey Copeland (2018) reminds us: “the sound of one’s voice carries with it traces of age, sex, gender, sexuality, culture and many more facets of collective and individual identity” (209). Furthermore, the spoken word is itself a powerful vessel of intimacy and closeness. One of my participants, Leo, explained this point in their answer: the podcasting voice helps to humanize abstract experiences, because “it carries the emotional weight of the person delivering it.”

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Further support for the therapeutic role that podcasting played for participants in the pandemic can be found in “belongingness theory,” which asserts that the need to belong—the “need for frequent, nonaversive interactions within an on going relational bond”—is one of the strongest and most fundamental human drives (Hartmann 2016, 497). Psychological researchers have found that this need is so urgent that social isolation or lack of satisfying relationships can be a signifi cant risk factor for mortality (House et al. 1988). Accordingly, the need to belong is intricately tied to wellbeing. According to Hartmann (2016), a wholly satisfied “need to belong” depends upon two criteria:

Intimacy in Isolation 64, number 3 become amplified in a crisis like COVID-19. First, as I have established, pod casting expands opportunities for identification for increasingly niche and diverse subjectivities, meaning no matter how physically isolated one is, it is relatively easy to find voices in the podcasting sphere with which one shares experienc es, values, or worldviews. Second, the serialized format of podcast distribution means that listeners frequently return to the same programs over extended peri ods of time, deepening the illusion of a mutual relationship. As Nadora (2019) notes: “sharing hosts’ lives through an ongoing narrative in serialised instalments furthers the parasocial bond—as if the listener is checking in on friends” (9). This trend was confirmed in my interviews, with all participants emphasizing their loyalty and affection for their “favorite” programs or hosts.

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Finally, the autonomy that I described earlier applies not only to curation of the content and personalities one listens to, but also the playback controls of the podcast interface itself. Morris and Patterson (2015) conceptualize the de velopment of these features as “sonic interactivity,” which they argue intensifies the “hyper-personalised” nature of the medium. The personal control afforded through such features enhances the capacity for non-averse, non-threatening, and pleasurable sonic experiences. If listeners don’t like the content, section, or even voices of a podcast—in other words, if they experience affective displea sure—they can simply turn it off and choose another one. This autonomy can be inherently comforting precisely because it allows even deeper control of “how we allow ourselves to resonate, especially where the vibrations of others are con cerned” (Hagood 2019, 4). As Gen put it in our interview: “I take responsibility for my own good time when it comes to podcasts. If I listen to something and I don’t like it, I turn it off, and I’ll go into something else. . . . I’m selective.” She highlighted this advantage by comparing podcasts to “normal” social interaction with a good friend: There’s nothing better than talking to a friend and you’re both in the right direction with the subject, it’s like a mound. And you just keep adding cool things, and then the next person says something cool, and so on and so forth. And before you know it, it’s like, “Gosh, we can take on the world at this rate.” And I think podcasts are that too. However, you can’t talk to them. You can’t engage with them. Equally though, a friend can really piss you off—ex cuse my language—but often, they say something that you don’t agree with. And so, it’s almost like you don’t have to have any conflict if you listen to pod casts. Zero conflict. If you don’t like what someone is saying on a podcast, you say bye and then you go and find another one. You know, you don’t have to Geninvest.later explained that the fulfilment gained from podcasts actually replaced her need for some real-world support networks during the pandemic. She considered herself an extrovert until lockdown arrived, during which she was pleasantly sur

And now, this netball team that I’ve grown away from, I’ve replaced all those players with podcasts. Gen’s reflection here gives insight into the vital role that social connection plays in wellbeing, and how new media practices like podcasting have expanded opportunities in this pursuit. Her preference for podcasting relationships over real friendships in this particular example emphasizes the unique role that parasocial phenomena play as instruments of sociality. Support for this claim can be found in Schmid and Klimmt’s (2011) conclusions about the social value of parasocial relationships (PSRs): Their unique role is rooted in their instrumental value: media users can decide autonomously whether they want to establish, continue, or break up a PSR; they do not have to accept rules and obligations that are inevitably implied in real-life relationships; and PSRs are typically less dynamic than real-life rela tionships, as most media characters display very stable characteristics and cannot respond individually to the social behaviours of media users like, for example, friends or neighbours do. Therefore, PSRs enable simulated or vicarious social experiences that people may find entertaining without demanding much effort or imposing obligations and responsibilities like real-life relationships. (254) In other words, in contrast to the real social networks available to her, podcasts allowed Gen to literally and figuratively “hear” what she wanted. As Hartmann (2016) reminds us, a satisfied need to belong relies upon interactions that should “ideally be pleasant, but should definitely be devoid of conflict or negative affect” (133). Podcasts allowed Gen to filter her environment to her own personal de sire, essentially suppressing the unstable, unpredictable, or unfavorable elements of social interaction while enjoying those that give her pleasure.

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prised at how much she enjoyed deciding the terms of her interactions: “COVID gave me a chance to enjoy podcasts in the comfort of my own home, so that was really nice. I quite like spending time on my own, and interacting with people when I want to.” Later in our interview, she elaborated on this point by offering up another anecdote: Years ago I played in this netball, social netball team and the group of us are still friends. We get together only probably about two or three times a year. And then the lockdown came and some of the girls and old team became so ner vous about things that they wanted to do a Zoom, pretty much every couple of weeks. . . . And I thought that was a really cool idea but I didn’t want to take part, because I thought, why don’t you contact everyone every couple of weeks when we don’t have a lockdown? I thought “wow, that just isn’t me at all.”

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Podcasts, like many digital media technologies, can be theorized as one of the latest manifestations of what Jodi Dean (2009) calls communicative capital ism: “the materialization of ideals of inclusion and participation in information, entertainment, and communication technologies in ways that capture resistance and intensify global capitalism” (2). Under communicative capitalism, Dean argues, “messages are contributions to circulating content—not actions to elicit responses” (26). Perhaps no medium better embodies this critique than podcasting. First, podcasting’s ultimate value lies in its ambient dimensions: the content of the message matters less than the affective experiences it offers users, which is often constituted by and through the people voicing them (and what they represent).

Second, the podcasting sphere is saturated by voices from laypeople, fandoms, producers, and professionals, reflecting perfectly what Dean conceptualizes as the “fantasy of abundance,” which begins with the observation that “more people than ever before can make their opinions known” (25). She elaborates on this concept in the first chapter of her book:

Conclusions, Critiques, and Future Areas of Inquiry

While listeners felt affectively and ideologically safe with their favorite podcast hosts, the private, customizable, individual, and idiosyncratic practices under pinning podcasting ultimately did little to challenge the ideological or material conditions of isolation from others. More importantly, this was never the goal to begin with. Instead, podcasts, like most new media during this time, helped listeners to navigate and manage these challenges privately. As Gen’s reflection shows, sometimes podcasts—and digital media at large—made it easier to com pletely sever traditional social ties.

Looking at most podcasting and radio literature to date, one might be forgiven for assuming that podcasting would have been a unifying and moralizing force in the pandemic, something that could have brought our varied networks closer together.

To quote Llinares and colleagues (2018): “podcasting seems to possess the advantages of the internet while expelling some of the pitfalls” (2). However, my analysis reveals that, somewhat paradoxically, participants’ engagement with podcasts during the pandemic represented both a mediated antidote to social iso lation and a fortification of its core dynamics. This is not to undermine the serious affective value and power that pod casting serves in a contemporary context. As I have demonstrated, for many, podcasts offered a vital means of sensory self-care, which provided easy comfort amid widespread uncertainty. Podcasts fostered feelings of safety, understanding, companionship, and intimacy for listeners suddenly bereft of those fundamental human needs. To conclude my analysis, I offer a critique of podcasting’s identity as an “empowered” medium, one that hopefully helps us to reach a richer under standing of podcasting’s value and its limitations in times of crisis.

“The psychological effects of losing all but our closest ties can be profound” writes Amanda Mull (2021) in an Atlantic article on the pandemic’s social impact. “Peripheral connections tether us to the world at large; without them, people

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to Dean, the risk of this fantasy is that massive streams of content erode the specificity of messages, creating an overwhelming din of voices that foreclose opportunities for action and application: “any given message is a contri bution to this ever-circulating content, a drop in the ocean of cultural and politi cal stuff engulfing us” (26). Similarly, the hyper-personalization of the podcasting medium provides great comfort for individual listeners, but ultimately does little to resolve increasing concerns about digital echo chambers, online polarities, and radicalization in an increasingly virtual social landscape (Hagood 2019).

Thus, a key risk associated with the personal autonomy offered by media tools like podcasts is an ever-increasing desire to “hear what you want,” which presents a challenge to idealistic discourses about podcasting’s identity as a community-driv en medium. However, as Hagood (2019) notes, “new media’s din of mediated voices—diverse and democratic, yet overwhelming and often hateful—makes guarded listening a necessity for sensory and emotional self-care” (6). Perhaps then, instead of theorizing podcasting in a binary of “progressive” versus “regres sive” media, it is more helpful for us to consider what podcasting’s popularity in this context illustrates about our sociopolitical landscape. Zizi Papacharissi (2014) argues that to understand the civic utility of technologies, “we need not inter pret them as forces that bring about change, do activism, or enact impact. They are networked infrastructures that present people with environments of a social nature, supporting interactions that are aligned with the particular cultural ethos deriving from historical or geographic context” (6). Through neoliberal logics of freedom and choice, podcasts offer listeners an escape from the fraught realities of the pandemic, while at the same time they reflect the same dynamics of isola tion, closed networks, and individualism that have defined our response to that pandemic. Podcasts thus occupy a liminal space in the pandemic: they are both inclusive and exclusive; social and solitary; democratic and hegemonic.

Uncoupled from contexts of action and application—as on the Web or in print and broadcast media—the message is simply part of a circulating data stream. Its particular content is irrelevant. Who sent it is irrelevant. Who receives it is ir relevant. That it need be responded to is irrelevant. The only thing that is rele vant is circulation, the addition to the pool. Any particular contribution remains secondary to the fact of circulation. The value of any particular contribution is likewise inversely proportionate to the openness, inclusiveness, or extent of a circulating data stream: the more opinions or comments that are out there, the less of an impact any given one might make (and the more shocking, spectacu lar, and new a contribution must be in order to register or have an impact). In sum, communication functions symptomatically to produce its own negation.

According(26)

. “Morale and Music.” History of the BBC. bbc.com/historyofthebbc//100-voices/ww2/music-morale. British Broadcasting Corporation (BBC). 2021c. “The History of Desert Island Discs.” BBC Radio 4. Berlant,J0MGKVfh7/the-history-of-desert-island-discs.https://www.bbc.co.uk/programmes/articles/59YrnYM0Tw8J7WL.2010.“CruelOptimism.”In

Podcasting’s overriding value in the pandemic thus lies not in its unifying potential, but instead in its individual affective impact.

The Affect Theory Reader, ed. M. Gregg and G. J. Siegworth, 93–177. Durham: Duke University Press. Berlant, L. 2017. “Big Man.” Social Text Online, Jan. 19. https://socialtextjournal.org/ Bull,big-man/.M.2003.

The Auditory Culture Reader. New York: Routledge. Copeland, S. 2018. “A Feminist Materialisation of Amplified Voice: Queering Identity and Affect in the Heart.” In Podcasting: New Aural Cultures and Digital Media, ed. D. Llinares, N. Fox, and R. Berry, 209–25. Camden: Palgrave Macmillan.

Intimacy in Isolation 405summer 2021 • volume 64, number 3 sink into the compounding sameness of closed networks.” As we retreat into our “bubbles” to prevent the spread of the virus, we creatively employ the media tools at our disposal to soothe our loneliness, anxiety, and worries. However, as I have demonstrated, the core appeal of technologies like podcasting often derives from the suppression of difference and discomfort: podcasting gives us the ability to hear what we want, when we want, how we want. While listening to your favorite podcast can sustain a powerful illusion of personal friendship and affec tion, more often than not the podcast host has, at most, only a vague idea of your existence, and you no idea of fellow audience members’. Instead, as my analysis on parasocial phenomena demonstrates, the medium’s defining appeal lies in its stable, consistent, uncomplicated one-sidedness. It is a medium, primarily, about contribution to the conversation, and the feeling of being a part of something. In Papacharissi’s words, “affective attachments to media cannot produce communi ties, but they may produce ‘feelings of community’” (4). While this might seem like a despondent perspective, personal affect-management plays an important role in crisis. Affective safety is central to survival and wellbeing in a fundamen tally unstable world: a compromised solution to uncontrollable circumstances.

References Amburgey, I. 2020. “COVID-19’s Impact on Podcast Listening (April Update).” Voxnest Blog, April 22. https://blog.voxnest.com/coronavirus-impact-on-podcast-listening/. Angell, J. R. 1941. “Radio and National Morale.” Am J Sociol 47 (3): 352–59. British Broadcasting Corporation (BBC) 2021a.“The BBC at War.” History of the BBC Britishbbc.com/historyofthebbc//research/bbc-at-war.BroadcastingCorporation(BBC).2021b

To quote Lauren Berlant (2010): “shifts in affective atmosphere are not equal to changing the world. They are, here, only pieces of an argument about the cen trality of optimistic fantasy to surviving in zones of compromised ordinariness” (116).

Dean, J. 2009. Democracy and Other Neoliberal Fantasies: Communicative Capitalism and Left Politics. Durham: Duke University Press. Goodman, S., et al. 2009. Sonic Warfare: Sound, Affect, and the Ecology of Fear. Cambridge: MIT Press. Goody, A. 2018. “BBC Features, Radio Voices and the Propaganda of War 1939–1941.” Media Hist 24 (2): 194–211. DOI: 10.1080/13688804.2018.1471346.

Greenwood, D., and C. Long. 2009. “Psychological Predictors of Media Involvement: Solitude Experiences and the Need to Belong.” Commun Res 36: 637–54. DOI: Gregg,10.1177/0093650209338906.M.,andG.J.Seigworth.2010. “An Inventory of Shimmers.” In The Affect Theory Reader, ed. M. Gregg and G. J. Siegworth, 1–28. Durham: Duke University Press. Hagood, M. 2019. Hush: Media and Sonic Self-Control. Durham: Duke University Press. Hartmann, T. 2016. “Parasocial Interaction, Parasocial Relationships, and Well-Being.” In The Routledge Handbook of Media Use and Well-Being, ed. L. Reinecke and M. B. Oliver, 133–44. New York: Routledge. Heeremans, L. 2018. “Podcast Networks: Syndicating Production Culture.” In Podcast ing: New Aural Cultures and Digital Media, ed. D. Llinares, N. Fox, and R. Berry, 57–79. Camden: Palgrave Macmillan. Horton, D., and R. R. Wohl. 1956. “Mass Communication and Para-Social Interac tion.” Psychiatry 19 (3): 215–29. House, J., et al. 1988. “Social Relationships and Health.” Science 241: 540–45. DOI: Hsu,10.1126/science.3399889.H.2020.“JoinMeinMy Obsession with ‘Desert Island Discs.’” New Yorker, March 19. Jarzyna,sion-with-desert-island-discs.https://www.newyorker.com/culture/cultural-comment/join-me-in-my-obsesC.L.2020.“ParasocialInteraction,theCOVID-19Quarantine,andDigitalAgeMedia.” Human Arenas. DOI: 10.1007/s42087-020-00156-0. Llinares, D., N. Fox, and R. Berry. 2018. “Introduction: Podcasting and Podcasts—Pa rameters of a New Aural Culture.” In Podcasting: New Aural Cultures and Digital Media, ed. D. Llinares, N. Fox, and R. Berry, 1–13. Camden: Palgrave Macmillan. Morris, J. W., and E. Patterson. 2015. “Podcasting and Its Apps: Software, Sound, and the Interfaces of Digital Audio.” J Radio Audio Media 22 (2): 220–30. DOI: Mull,10.1080/19376529.2015.1083374.A.2021.“ThePandemicIs Resetting Casual Friendships.” Atlantic, Jan. Nadora,al-friends/617839/.https://www.theatlantic.com/health/archive/2021/01/pandemic-goodbye-casu28.M.2019.“ParasocialRelationshipswithPodcastHosts.”BAHonorsthesis,PortlandStateUniversity. University Honors Theses. Paper 771. DOI: 10.15760/hon Papacharissi,ors.789. Z. 2014. Affective Publics: Sentiment, Technology, and Politics. Oxford: Oxford University Press. Perks, L. G., and J. S. Turner. 2019. “Podcasts and Productivity: A Qualitative Uses and Gratifi cations Study.” Mass Commun Soc 22 (1): 96–116. DOI: 10.1080/15205436.2018.1490434.

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Gordon, L. 2018. “What Does the End of the World Sound Like? Listen to This.” Out line, Aug. 20. https://theoutline.com/post/5960/climate-change-music.

Intimacy in Isolation 407summer 2021 • volume 64, number 3 Schmid, H., and C. Klimmt. 2011. “A Magically Nice Guy: Parasocial Relationships with Harry Potter Across Different Cultures.” Int Commun Gaz 73 (3): 252–69. DOI: Sollery,10.1177/1748048510393658.P.2021.“ThisIsWhatLockdown Sounds Like.” Conversation, Jan. 21. https:// Spotifytheconversation.com/this-is-what-lockdown-sounds-like-153590.Investors2020.“SpotifyTechnologyS.A.AnnouncesFinancial Results for Third Quarter 2020.” Press release. Spotify Investors, Oct. 29. Sullivan,nancial-Results-for-Third-Quarter-2020/default.aspx.com/financials/press-release-details/2020/Spotify-Technology-S.A.-Announces-Fihttps://investors.spotify.J.L.2018.“PodcastMovement:AspirationalLabourandtheFormalisationofPodcastingasaCulturalIndustry.”In Podcasting: New Aural Cultures and Digital Media, ed. D. Llinares, N. Fox, and R. Berry, 35–56. Camden: Palgrave Macmillan. Tian, Q., and C. A. Hoffner. 2010. “Parasocial Interaction with Liked, Neutral, and Dis liked Characters on a Popular TV Series.” Mass Commun Soc 13 (3): 250–69. Williams, R. 1999. “Cultural Safety: What Does It Mean for Our Work Practice?” Aus NZ J Pub Health 23 (2): 213–14.

Rebecca E. Olson,* Adil M. Khan,* Dylan Flaws,† Deborah L. Harris,‡ Hasan Shohag,§ May Villanueva,¶ and Marc Ziegenfuss**

**Adult Intensive Care Service, The Prince Charles Hospital, Chermside, Queensland, Australia.

Correspondence: Rebecca E. Olson, School of Social Science, University of Queensland, St. Lu cia, Queensland, Australia.

*School of Social Science, University of Queensland, St. Lucia, Australia.

†Department of Mental Health, Royal Brisbane and Women’s Hospital, Herston, Queensland; Critical Care Research Group, The Prince Charles Hospital, Chermside, Queensland; and School of Clinical Sciences, Queensland University of Technology, Kelvin Grove, Queensland, Australia.

‡School of Nursing, Midwifery and Health Practice, Victoria University of Wellington, New Zealand.§Internal Medicine, Gold Coast University Hospital, Gold Coast, Queensland, Australia.

Email: r.olson@uq.edu.au.

¶Auckland City Hospital, New Zealand.

Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 408–419.

ABSTRACT COVID-19 has plunged us into times of loss—loss of friends and family, loss of purpose, and loss of a sense of certainty about the immediate future. As we traverse this time of anomie and loss between pre- and post-COVID-19 times, through pandemic surges that threaten to exhaust our resources and seemingly endless troughs of calm, we need to care for each other. Care provided to those in need of hos pitalization due to COVID-19 should undoubtedly be prioritized, but we should not forget to care for those who are physically well but suffering, by recognizing the fear and sorrow that flavor changed experiences due to COVID-19. Narratives that reveal challenges and triumphs are central to this kind of care. Frank (2007) argues that care is about “helping people find their stories.” We find comfort in telling these stories and in hearing them; recognizing ourselves in another’s tale allows us to find meaning in our own suffering. This paper tells the narratives of three health professionals on the COVID-19 frontline.

© 2021 by Johns Hopkins University Press 408 Victors, Victims, and Vectors

Documentaries

The well-established story of medicine in the 20th century is one of discovery and intervention: perseverance and conquest over the unknown leading to great achievements. Improvements in medical knowledge (along with advances in wealth, nutrition, and public health), from the discovery of penicillin to a vaccine for polio, saw substantial improvements in life expectancy (Szreter 2002). such as the New England Journal of Medicine’s Getting Better: 200 Years of Medicine tell the familiar tale of the victors of medical research, from Dr. Sidney Farber’s advances in treating childhood leukemia in 1948 to advances in personalized medicine and the terror, turmoil, and triumphs of the HIV/AIDs epidemic (Porter, Dietz, and Johnson 2012). There is comfort—from the van tage point of the present—in the linear progress trajectory of medicine that such storiesCOVID-19—asreinforce.

a novel and potentially life-threatening disease—suspends this humanistic narrative, thrusting medicine into uncertain terrain and the world into a period of stasis. The emotional and economic burden from COVID-19 is heavy, and it is not yet clear how long we will need to bear it. Yet uncertainty has long been central to medicine. Uncertainty comes not just from personal but also professional limits of knowledge (Fox 1957). New York Times medical col umnist and physician Dr. Lisa Sanders (2014), for example, recounts her first day of medical school, when the faculty dean announced that “half of what we teach you these next four years will be wrong. Unfortunately, we don’t know which half” (219). Further disturbing the narrative of certainty, and the security that it brings, are uncertainties stemming from treatment and client responses (Light 1979). Variations in human bodies and the complexity of interactions between the social, psychological, environmental, and physical realms mean medicine isn’t always an exact science; sometimes it’s a process of trial and error (Hodges 2010).

The Story of Medicine

COVID-19 lays bare the (un)certain tension in medicine’s narrative. To vary ing extents, governments around the world have entrusted medical officers with direct responses to the pandemic, making judgments about border closures, social distancing, mask wearing, and work-from-home restrictions. But when medi cal officials have made mistakes or changed guidelines following the release of new information, we have seen frustration with this vacillation experienced as a betrayal in our trust in medicine to secure our futures (Martin et al. 2020; Pi otrowski 2020).

In addition to disrupting medicine’s narrative, COVID-19 has prompted suf fering through many other forms of loss. Drawing on Tate and Pearlman’s (2019) relational conceptualization of self and suffering, COVID-19 has threatened who we are. Lockdown undermines our relationships while uncertainty and change threaten the socially informed roles that are central to what it means to be our selves. This is true for many, but perhaps particularly for health-care professionals

Victors, Victims, and Vectors 409summer 2021 • volume 64, number 3

During the height of the HIV epidemic, medicine was valued not so much for its (delayed) ability to treat those facing a life-threatening illness, but for its capacity to bear witness to suffering and provide care (Frank 2002). Not eventual treat ment, but care. This aligns with the 15th-century aphorism offering a timeless assessment of medicine’s role: “to cure sometimes, relieve often, comfort always” (Shaw 2009, 955). During the height of the HIV/AIDs epidemic, medicine of fered care and comfort by recognizing and acknowledging other’s’ suffering and helping patients and carers to make sense of their loss: lost physical capabilities, lost capacities to work, lost friends, lost plans, lost capacity to plan for the future (Frank 2007; Olson 2011; Tate and Pearlman 2019). Narratives are central to this kind of Words,care.more specifically stories, are therapeutic. They have the power to assuage and make people feel cared for. Through the validation and empathy that they foster, stories can even alleviate physical symptoms of pain (Tate and Pearlman 2019). In short, if we feel cared for, we do better physiologically—we feel less fatigued and less pain; our bodies focus on repair rather than defensive response (Brody 2016; Marchant 2016). Narratives also help us to understand what to do and who to be.

410 Perspectives in Biology and Medicine

Arthur Frank (1993, 2003, 2007, 2008) argues that when serious illness threat ens one’s sense of self, life purpose, and linear trajectory, narratives can be central

Stories “show how to live” and “bring everyone to life, by allowing us to see ourselves in the lives of others” (Frank 2007, 393, 394). Telling our own stories allows us to contain and distance ourselves from what is threatening us, find meaning in suffering and—most importantly—find ourselves (Thomas 2010).

working on the frontline, isolated from family and friends and facing reimagined roles in hospitals, clinics, and communities. Suffering in the context of uncertainty and powerlessness is not new for med icine. During the HIV epidemic, it took nearly two decades to make anti-retro viral medications widely available to people living with HIV/AIDS—and they are still not universally accessible (Barré-Sinoussi, Ross, and Delfraissy 2013). The years between emergence and pharmaceutical treatment saw millions of peo ple infected, their taken-for-granted linear trajectories suspended (Ezzy 2000).

Listening to stories teaches us what it means to live and live well. From Ae sop’s fables to the stories of First Nation Peoples, narratives provide important lessons about the world and how to be in it (Wachowich and Scobie 2010).

Although narratives can feel very personal, they are also social. As Andrews and colleagues (2004) explain, narratives are “the cornerstone of our identities,” but they “are not and can never be wholly personal” (100). Stories work both on and through people, helping us to find our roles and “become a self” (Frank 2007, 391). They are how we form (and reform) our identities within groups, how we articulate ourselves through social means—especially in times of uncertainty and change, such as illness.

Rebecca E.

Olson et al.

411summer 2021 • volume 64, number 3 to reimagining and reasserting one’s identity. Stories are useful in helping patients to find, and find meaning in, their new roles—to articulate the grief for lost plans and recognize frustration with life’s fragility (Bury 2001). As Frank (2007) explains: “The universal aspiration expressed in personal narratives of illness is to learn what it is to play the part of being ill, to reach a decisive moment in which one shows that one can play this part well, and to teach others something of their parts and what counts as playing them well. This last aspiration, to teach, is when private trouble crosses into public plight, and illness crystallizes the problem of how to live” (380–81). In contexts where cure is not an option, care can be more about “helping people find their stories” (390). The role of health professionals in the patient’s unfolding drama is to recognize that “they are playing parts in the ill person’s plight” and to help, rather than stifle, the patient’s narrative journey (380). The power of stories to care and alleviate suffering, however, is not limited to patients. Health-care professionals can also benefit.

Shifting beyond medical sociology’s long fascination with patient’s narratives and medicine’s usual practice of emotional concealment (Frank 1993, 2007; Mc Naughton 2013; Thomas 2010), this essay reflexively examines the narratives of three health professionals on the COVID-19 frontline. Specifically, it draws on narrative interviews with coauthor health professionals from New Zealand and Australia, facilitated as part of an international webinar on COVID-19 frontline responders’ experiences, to explore what it means to be a health professional

Victors, Victims, and Vectors

Medicine’s New Story With lockdown measures and border closures, everyone has experienced fear and loss: lost roles, lost connections, lost purpose, and, importantly, a lost sense of certainty about the future. For the story of medicine in particular, COVID-19 has posed a disruption. Beside the fear of close contact with COVID-19 patients, health-care professionals have experienced a sense of loss as the traditional role of hero or victor has been challenged by this novel disease, prompting uncer tainty for some about who and how to be. Like HIV in the 1980s and 1990s, COVID-19 has displaced medicine’s discovery and conquest narrative with a more complex tale that includes fear of the unknown. How do health professionals learn to play their parts in this more complex drama? How can they support themselves and each other? Narratives can help. Narratives help us show care for each other and learn what it means to play our new parts. Recognizing ourselves in another’s tale can allow us to find meaning in and relief from our own suffering. This is because, when we become story tellers, “fear and loss become actors in [our] drama,” and we become “capable of directing that drama” rather than the reverse. In this way, stories take care of us, allowing us to take control of our emotions and share them (Frank 2007, 389).

Chapter 1. Confronting the Unknown Our story begins with Dr. Hasan Shohag, Staff Specialist in Internal Medicine at the Gold Coast University Hospital in Queensland, Australia. Hasan tells a genesis story: the start of the “conflict between forces” with patients, health-care professionals, and the community caught in the surge of COVID-19’s tidal wave.

1A summary of the discussions included in the webinar can be found at COVID-19-and-frontline-responders—Health-professional-perspectives.https://cgs-bd.com/article/971/Thewebinar,jointlyorganizedbytheFacultyofHumanitiesandSocialScienceandtheSchoolofSocialScience,UniversityofQueensland,Australia,andtheCentreforGovernanceStudies,Dhaka,Bangladesh,broughttogetherCOVID-19frontlinehealthrespondersfromfiveSouthAsiancountriesandAustraliaandNewZealandtoexchangeexperiencesandlearnfromeachother.

References to well-known images and tales of danger, loss and uncertainty are woven into health professionals’ stories to make them more familiar and aid in the search for security, predictability, and triumph amongst the dangers and upheaval of COVID-19. The metaphors are familiar—some might even say cli ché—but useful, helping us to make sense of and attune our emotions to pre vious experiences of the unknown, the tumultuous, and the fear-inducing. The collective story articulated across health professionals’ narratives is divided into three chapters, aligned with Frank’s (2007) analysis of typical story emplotment, which begins with genesis, follows through to a form of reckoning, and ends with a resolution.

Rebecca E. Olson et al. 412 Perspectives in Biology and Medicine and to live well in this new era (Frank 2008; Khan and Olson 2020) 1 Inspired by ethical convictions from participatory research and narrative approaches to valuing experiential data (Bernard 2000; Thomas 2010), first and second authors Olson and Khan invited five health professionals, representing different frontline responder experiences in logistics, mental health, internal medicine, contract tracing, and nursing, to collaborate with us on the project as participants, co-re searchers, and webinar speakers. Prior to the webinar we asked collaborating health professionals to reflect in written format on a list of questions inspired by narrative approaches to inquiry (Labov 1997). Questions attended to health professionals’ knowledge, actions, feelings, and reflections: When did you first hear about COVID-19? When was your first engagement with a COVID-19 patient? How did you feel? How did you respond? How were you treated in the community after you returned from work? Should we see COVID-19 or another pandemic reemerge, what should we do differently? During the recorded international webinar, we invited frontline responders to speak to their written narratives and respond to questions. In this essay, we draw on our abductive anal ysis of the recorded narratives—obtained in written and audiovisual format (in quotes)—of three coauthors with direct patient contact experience (Dey 1993; Frank 2007). We merge these narratives into one story (below), drawing on me dia reports for context.

The “fear of the unknown” deterred some coworkers, but Hasan saw COVID as “a once in a life-time event.” He volunteered to be a leader of the COVID response team and began directly treating COVID-19 positive patients at the end of March. Because the hospital was “well-equipped” with the necessary personal protective equipment (PPE), Hasan “never felt any risk.” But this feeling was not shared by the community: In hospital, a strict hygiene protocol was maintained daily. It included changing into hospital scrubs and wearing PPE prior to entering COVID-wards, taking a shower and changing back to casual clothing upon leaving the COVID-ward and following a strict handwashing protocol. All the COVID patients were kept in tight isolation in their single rooms with negative pressure ventilation and a two-stage entry system to visit them. Unfortunately, despite all this, I was seen by others in my community as a potential threat of COVID infection. I was asked to stay in hospital indefinitely. My family was seen by neighbours as a possible source of infection too.

For Hasan, the story begins in January 2020. He learned that a doctor from China’s Wuhan province found a new strain of coronavirus. Subsequently, Wu han went into lockdown and a temporary hospital was formed to treat corona virus patients in the area. Invoking Hokusai’s famous painting, The Great Wave of Kanagawa, the news in China was like a tidal wave visible in the far distance, building strength before reaching our shores. By March the waves came crashing down before us, in Australia. Hundreds of cruise ship passengers disembarked in Sydney’s Circular Quay, spreading coronavirus through Australia’s second most densely populated urban area (ABS 2020). International arrivals quietly flooded capital cities with the infection. In Queensland, some of the first patients to be treated were Hollywood actors Tom Hanks and Rita Wilson, who started to feel unwell while working on a Baz Luhrmann movie about Elvis (ABC News 2020). Hasan describes the actors as “whistle blowers,” awakening Australia and the Gold Coast University Hospital, where he works, from their paralytic fear of the COVID tidal wave and prompt ing a swift call to action. Consequently, our infectious diseases team established COVID-wards. Hospital governance came up with a multi-tier action plan. Appropriate working groups were appointed in advance. To reduce the pressure on doctors and nurses, shift duties were put in place, minimizing burnout. Daily briefings and multidisci plinary meetings were in place to evaluate the progress and find fault in the sys tem. Review of new emerging evidence in treatment was discussed daily.

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As the first wave progressed, reports of health professionals in the community— in Australia and abroad—being scorned had become commonplace in the media

A niggling sense of helplessness started seeping in. “The stress of your patient deteriorating in front of your eyes and you are unable to do anything, is the worst fear for a doctor.” This sense of powerlessness was undergirded by widespread uncertainty. “There was no treatment. We knew too little about COVID at that stage. . . . We only knew Hydroxychloroquine may have some benefit as it showed inhibition of COVID-19 in vitro.” So, Hasan prescribed hydroxychlo roquine for several COVID patients, but, as studies would eventually confirm (WHO 2020), he was “not convinced” of its efficacy in treating COVID-19.

The plot twist in the call to action of this early chapter in COVID-19 frontline responders’ story is that the victors, victims, and vectors are one: health profes sionals at risk of infection, nonetheless acting to treat and protect the public from COVID. The villain takes many shapes: it is found in the disease, the communi ty, and possibly even in oneself as a potential source of infection.

starts in late February. New Zealand has its first COVID-19 pa tient, an international arrival from Iran, who is being treated at Auckland City Hospital (France-Presse 2020). “I heard on the news that the hospital was treating the first COVID patient. Because I work in a Respiratory Ward, I had assumed the patient would be treated in another ward. So, I was surprised when the patient was in our ward—moreover, when I learned that I would be the nurse taking care of him that shift.”

Rebecca E. Olson et al. 414 Perspectives in Biology and Medicine (Bagcchi 2020; Ralph et al. 2020). Hasan began to share the sense of vulnerabil ity and fear projected by neighbors. None of his patients died, but a close friend in the UK contracted the disease and died. Subsequently, “the fear of getting COVID and transmitting the infection to others became stronger.”

Her initial inclination was to run. “There was a lot of fear and anxiety every time we heard the world and local news about the number of COVID cases in creasing day by day. I felt like quitting. I had just joined the hospital for a threemonth contract. But I said to myself, I was called to be a Nurse to serve the sick

In the next chapter, we learn what it means to play the part of the duty-bound health professional, acting and enduring to help those struggling.

In Hasan’s genesis story, we hear his excitement at rising to the challenge, along with his sorrow for the loss of a close friend. We bear witness to the rising sense of fear and helplessness that goes with confronting a novel disease. We get a glimmer of the uncertainty swimming below medicine’s shining surface.

Chapter 2. Reckoning with COVID-19 New Zealand Nurse May Villanueva’s story is one of reckoning. It is a story of “self-reconstruction and renewal,” where the hero is “forced . . . by necessity . . . to recognize, first, what they truly value and desire, and second, the fullest extent of their capacity to act in order to achieve what is valued and desired” (Frank 2007,May’s392).story

May’s sense of loneliness was only interrupted by her feelings of camarade rie with the others working on the COVID ward. “Our Ward was our bubble during COVID-19.” They were alone together, as “the hospital responded by isolating the COVID ward—including restrooms, equipment, cleaners, kitch ens—from all other wards in the hospital. . . . All doors were locked. No other Ward had access to ours.” A buddy system, where each nurse worked with one other nurse over the course of a shift, meant she did not feel alone when caring for patients on the COVID ward. The other nurse was there to share in caring for the patient, assist in maintaining infectious disease control measures, and break up the oppressiveness of isolation.

From May’s story of reckoning, we learn what it means to live well—to em body a sense of duty, to endure isolation and manage emotionally and relation ally. May’s story allows us to bear witness to her fear, suffering, and vigilance as a health professional working on the frontline and caring for the sick while pro tecting herself, her family, and the public. From May, we also gain insight into the sense of loss that is magnified for frontline health workers: lost certainty about the future, lost contact with family, and lost taken-for-granted sense of infection security. The sorrow that imbues her tale is interrupted only briefly by empathy for her patients, for whom isolation is even more extreme, and by solidarity with colleagues whose shared sense of camaraderie offers temporary respite.

“Practicing social distancing at home was hard—setting guidelines, having separate utensils, no other stuff in the toilet and shower room. Each per son had their own basket for toiletries. For two months, not sleeping in the same room with my spouse and not being able to kiss and hug my kids. It was also the time that my children were at home doing distance learning with my spouse.”

Victors, Victims, and Vectors 415summer 2021 • volume 64, number 3 regardless of the sickness and the situation. So, I stood firm and am doing my best to serve my patients and protect myself and my family at home too.”

May’s narrative offers insight into her suffering as a COVID nurse, giving this suffering scale and purpose. The final chapter of our COVID narrative culmi nates in a path forward, not just for health professionals working on the frontline, but for the broader public.

Protecting her family meant weeks without physical contact with her spouse or children.

Sorrow and longing tinged with inert compassion are evident in how May describes life while working on the COVID ward. She compares her sense of loss to staying on the COVID ward. “I felt for my patients wanting to have their fam ily see them, being sick and away in the hospital. They wanted their own books and belongings. They felt bored and sicker being in a lonely room, but their belongings were restricted. They had phones with dead batteries, as nothing was allowed to enter their hospital rooms unless it was significant for their care—not even phone chargers.”

In Hasan and May’s stories, we see Australia and New Zealand rendered pow erless to COVID-19, without a cure and unable to foster the usual affect-rich, relational caring environment to which patients and practitioners are accustomed. Through their stories, we hear the familiar tales of fear and loneliness, helping us to recognize and give meaning to our own feelings of loss, frustration and helplessness.Deborah’s chapter offers us a path out of the turmoil: a decision about how to respond as health professionals and as humans. Even without a vaccine, her story tells us that the challenges of COVID-19 can be endured and staved off through

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Chapter 3. Road to Resolution

Nurse Practitioner and Lecturer Dr. Deborah Harris’s chapter offers an ending to our frontline responders’ tale: a path to follow in responding to COVID-19.

Deborah was called on in mid-March 2020 to set up New Zealand’s National Close Contact Service (NCCS). With a team of five other nurses, she worked to establish this government-supported response to COVID-19. The NCCS was responsible for identifying and calling by phone close and casual contacts of those infected with COVID-19, and instructing them to isolate: I was responsible for confirming that people had COVID-19, calling close con tacts and informing people that self-isolation (or more correctly that quarantine) was required for 14 days. I also fielded phone calls from nurses and people in the community who were unwell. As more and more callers were recruited to the NCCS, our small group of 5 nurses became more responsible for pastoral care. There were tears, feelings of fear of the unknown. As the COVID-19 outbreak continued, anxiety increased. However, our leadership was calm and clear, and we had a capability style (we have got this—if we do this).

The NCCS was New Zealand’s mechanism for breaking through the fear and uncertainty to develop a defense plan. This plan called on the public to trust in leaders, rally support, and reinstate a sense of confidence in the “now normal.” “I am troubled by the number of people who have died internationally because of poor leadership. The virus has one goal—to infect the host (us). Our job is to stop that from happening and the only way to do that is to listen to the science and public health advice: self-isolate.” As Auckland saw a second wave of COVID-19 in August—albeit much smaller—the defensive plan was tested again. But they were “more prepared” this time. Through the NCCS, they now have “end-toend data collection which is accessible to all healthcare providers who need it. We can call up to 10,000 people a day.”

As Frank (2007) explains, dramatic stories typically involve: “conflict between forces; certain actors are caught among those forces and have limited capacities to affect the forces that affect them; the action moves forward toward a decisive mo ment in which an individual actor or a collective of actors does something” (380).

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Narratives provide a rich means of exploring human action as embodied and emotionally rich. They offer a way to appreciate the centrality of meaning, emo tion, and identity at the intersection between individual behavior and social cir cumstances. Besides forming the “fabric of everyday life,” narratives mend and reinstate meanings (Bury 2001, 264). Much research has attended to how illness narratives enable individuals to respond to an identity disrupted by illness or stig ma by helping reconcile their relationship between body, self, and surroundings (Bury 2001; Hydén 1997). Yet stories may be useful to all of us—sick or not—as we confront the existential challenges that come with COVID-19. Narratives may be particularly valuable to health-care professionals, whose overarching medical narrative, roles, and sense of self are challenged by the suffering, uncer tainty, and loss of COVID-19. The story offered here not only articulates these challenges, but normalizes and contains them, allowing space for health profes sionals to find reassurance and (re)direction. Furthermore, the narratives reflected upon here also serve as an important reminder that, despite ongoing isolation, we are not walking this road alone.

417summer 2021 • volume 64, number 3 strong leadership and the tried-and-tested techniques of quarantine and contact tracing. Rather than a resolution—as might be found in a happily-ever-after tale—Deborah’s story offers a road paved with strategic thinking and prevention. As Bruner (2002) explains, some stories are about finding meaning in “the road rather than about the inn to which it leads” (cited in Frank 2007, 389). Once we know what road we are walking down, we can then (re)discover who we are and what we are to do.

Conclusion As we travel between the pre-COVID and post-COVID worlds—or, more ac curately, as we move into a world where COVID-19 becomes one of many seasonal viruses to which we have some immunity in the community—we need to take care of ourselves and each other. Stories are central to providing this care. “Fears multiply in silence,” Frank warns us (2007, 388). By allowing us to name and contain our fears and uncertainties—especially in acknowledging that chal lenges are daunting, but triumph is also possible—stories provide a mechanism for reflecting on who and how to be.

References ABC News Australia. 2020. “Tom Hanks and Rita Wilson Released from Gold Coast Hospital as Queensland’s Coronavirus Cases Reach 78.” ABC News Australia, March Andrews,17. M., et al. 2004. “Narrative Research.” In Qualitative Research Practice, ed. C. Seale, et al., 98–114. London: Sage.

“Five Dramas of Illness.” Perspect Biol Med 50 (3): 379–94. Frank, A. W. 2008. “Narrative Research from Inside and Outside.” Can J Sociol 33 (3): Hodges,689–92.B.

Australian Bureau of Statistics (ABS). 2020. “Regional Population: 2018–19.” https:// Bagcchi,www.abs.gov.au/statistics/people/population/regional-population/2018-19.S.2020.“StigmaDuringtheCOVID-19Pandemic.” Lancet Infect Dis 20 (7): Barré-Sinoussi,782. F., A. L. Ross, and J. F. Delfraissy. 2013. “Past, Present and Future: 30 Years of HIV Research.” Nat Rev Microbiol 11: 877–83. Bernard, W. T. 2020. “Participatory Action Research as Emancipatory Method: Chal lenges and Opportunities.” In Research Training for Social Scientists, ed. D. Burton, 167–86. London: Sage. Brody, H. 2016. “Beyond Mind and Body.” Perspect Biol Med 59 (2): 276–82. Bruner, J. 2002. Making Stories: Law, Literature, Life. New York: Clarkson Potter. Bury, M. 2001. “Illness Narrative: Fact or Fiction?” Sociol Health Illn 23 (3): 263–85. Dey, I. 1993. Qualitative Data Analysis: A User-Friendly Guide for Social Scientists. London: Ezzy,Routledge.D.2000. “Illness Narrative: Time, Hope and HIV.” Soc Sci Med 50 (5): 605–17. Fox, R. 1957. “Training for Uncertainty.” In The Student Physician: Introductory Studies in the Sociology of Medicine, ed. R. Merton, 207–41. Cambridge: Harvard University France-Presse,Press. A. 2020. “New Zealand Confirms First Coronavirus Case.” Guardian, Feb.

2010. “Clinical Commentary.” In My Imaginary Illness: A Journey into Uncer tainty and Prejudice in Medical Diagnosis, ed. C. Atkins. Ithaca: Cornell University Press. Khan, M. A., and R. E. Olson. 2020. “Beyond PPE—COVID-19 and Safety, Stress and Trauma Concerns of Frontline Health Workers: Perspectives from Australia and New Zealand.” South Asia J, Sept. 3. Labov,from-australia-and-new-zealand/.19-and-safety-stress-and-trauma-concerns-of-frontline-health-workers-perspectives-http://southasiajournal.net/beyond-ppe-COVID-W.1997.“SomeFurtherStepsinNarrativeAnalysis.”

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J Narr Life Hist 7 (1–4): Light,395–415.D.1979. “Uncertainty and Control in Professional Training.” J Health Soc Behav 20 (4): 310–22. Marchant, J. 2016. Cure: A Journey into the Science of Mind Over Body. Melbourne: Text Martin,Publishing.G.P., et al. 2020. “Science, Society, and Policy in the Face of Uncertainty: Re flections on the Debate Around Face Coverings for the Public During COVID-19.” Criti Public Health 30 (5): 501–8.

Frank,virus-case.https://www.theguardian.com/world/2020/feb/28/new-zealand-confirms-first-corona28.A.W.1993.“TheRhetoricofSelf-Change:IllnessExperienceasNarrative.” Sociol Q 34 (1): 39–52. Frank, A. W. 2002. “What’s Wrong with Medical Consumerism?” In Consuming Health: The Commodification of Health Care, ed. S. Henderson and A. Petersen, 13–30. London: Frank,Routledge.A.W.2007.

Sanders,in-a-border-city-143787.com/heroes-or-just-doing-our-job-the-impact-of-COVID-19-on-registered-nurses-https://theconversation.L.2014.“DiagnosisasProblemandSolution.”In Social Issues in Diagnosis: An Introduction for Students and Clinicians, ed. A. Goldstein Jutel and K. Dew, 213–19. Baltimore: Johns Hopkins University Press. Shaw, Q. 2009. “On Aphorisms.” Brit J Gen Pract 59 (569): 954–55. Szreter, S. 2002. “Rethinking McKeown: The Relationship Between Public Health and Social Change.” Ame J Pub Health 92 (5): 722–25. Tate, T., and R. Pearlman. 2019. “What We Mean When We Talk About Suffering— And Why Eric Cassell Should Not Have the Last Word.” Perspect Biol Med 62 (1): Thomas,95–110.C. 2010. “Negotiating the Contested Terrain of Narrative Methods in Illness Contexts.” Sociol Health Illn 32 (4): 647–60. Wachowich, N., and W. Scobie. 2010. “Uploading Selves: Inuit Digital Storytelling on YouTube.” Études/Inuit/Stud 34 (2): 81–105. World Health Organization (WHO). 2020. “‘Solidarity’ Clinical Trial for COVID-19 Treatments.” WHO. al-for-COVID-19-treatments.rus-2019/global-research-on-novel-coronavirus-2019-ncov/solidarity-clinical-trihttps://www.who.int/emergencies/diseases/novel-coronavi

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Victors, Victims, and Vectors 2021 • volume 64, number 3 McNaughton, N. 2013. “Discourse(s) of Emotion Within Medical Education: The Ever-Present Absence.” Med Educ 47: 71–79. Olson, R. 2011. “Managing Hope, Denial or Temporal Anomie? Informal Cancer Car ers’ Accounts of Spouses’ Cancer Diagnoses.” Soc Sci Med 73: 904–11. Piotrowski, D. 2020. “The Reason Behind Mask Backflip: Why Gladys Berejiklian

Waltham: Massachusetts Medical Society. DVD. Ralph, J., et al. 2020. “Heroes, or Just Doing Our Job? The Impact of COVID-19 on Registered Nurses in a Border City.” Conversation, Aug. 23.

55-Word Stories

Michael McLane

Michael McLane is an editor with the journals saltfront and Sugar House Review. His work has ap peared in numerous journals, including Western Humanities Review, Denver Quarterly, Colorado Review, and South Dakota Review. He is a PhD candidate in the International Institute for Modern Letters at Victoria University of Wellington. Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 420. © 2021 by Johns Hopkins University Press 420 Unpacking We move in two weeks before lockdown. The house is full of spiders. At first, we release them, then invite them to stay. We feed feral kittens abandoned be neath the house in those first quiet days, leave food and water for birds and hedgehogs. We trust in routine, but love what flickers in or out.

National Socio-Environmental Synthesis Center (SESYNC), University of Maryland–College Park. Email: meisenberg@sesync.org.

ABSTRACT During the first year of the COVID-19 pandemic, historians of medicine, disease, and health became frequent guests in academic talks and even in national media. These historians’ expertise suddenly appeared relevant, particularly those who worked on two previous pandemics, the 14th-century Black Death and the 1918 influenza pandemic. This article examines how history was searched for possible insights and predictions about the present-day pandemic. The article then traces why assumptions about what COVID would do based on the past, such as COVID leading to a leveling of inequality, were faulty: these supposed lessons from the past flattened pandemics into one-size-fits-all approaches, which existed in neither the past nor the present. To understand the possibilities and limits of what pandemics do, we must ground the differing experiences of a pandemic in their specific times and places. In particular, framing pandemic responses in terms of resilience serves to center the mar ket and the state, rather than individuals. The article concludes with thoughts on how to make changes during a pandemic that center people, not states or profits.

© 2021 by Johns Hopkins University Press 421 Uses of History During the First Nine Months ofMerleCOVIDEisenberg

By fall of 2020, the COVID-19 pandemic had passed through two rough stages of historical commentary and reflection. The first attempted to use lessons

The author would like to thank Robert Alpert, Andrew Edwards, and the anonymous reviewers for their comments. This work was completed at the National Socio-Environmental Synthesis Center, which is supported by funding received from the NSF DBI 1639145.

Perspectives in Biology and Medicine, volume 64, number 3 (summer 2021): 421–435.

In other cases, historians drew on analogies from the 1918 influenza pandemic in policy discussions of how to minimize the impact of subsequent waves of COVID (Petras and Gelles 2020). There was a view early on that we in the 21st century could take lessons from the past about what had worked and what had failed, to ensure we would do better. But by late 2020, at least in the United States, that seemed a vain hope. Historical reflection on the spread of pandemics all but dis appeared. Historical knowledge had proved ineffective. It became increasingly clear that despite the profession’s best efforts, few in the US had learned anything from history (Chandra, Christensen, and Likhtman 2020).1 In fact, policymakers seem to have chosen to make disastrous choices despite knowing what had pre viously occurred. Presentist exceptionalism had triumphed.

Merle Eisenberg

1Chandra and co-authors wrote in the spring of 2020 but published in the fall. Their article reflects a sense of optimism during the early months of COVID that, by explaining the importance of season ality and connectivity in the disease’s spread, it might be stopped. Many of the articles in the special issue of the Journal of Global History that was published in November 2020 suggest similar lessons, but this recourse to history did not stop subsequent outbreaks of COVID, which the introduction to the volume, written later, recognizes (Birn 2020).

2Increased inequality due to COVID-19, rather than a reduction, seems obvious now, with Amazon CEO Jeff Bezos’s seemingly limitless increase in wealth as the most apparent. For a discussion of num bers, see Woods 2020. Eisenberg and Mordechai 2020c offer a refutation of these Black Death myths and legends.

422 Perspectives in Biology and Medicine from historical pandemics as tools to help the public understand and mitigate the spread of the virus. The second asked what past pandemics could tell us about what comes next. One group of early historical op-eds offered comparisons with the Black Death (c. 1346–1353 CE) and its global spread. COVID and the Black Death both passed along trade and transport routes from China to the Middle East and then to Europe, offering plenty of comparative material, and journalists and producers asked historians to contextualize this information (Marcus 2020).

The second stage of historical analysis focused on what might come next, but the same naïve goal remained: using the past as a means of projecting beneficial outcomes to replicate. Stage one’s failures were lost, or ignored, in the process. Given the few discernible, positive effects of the 1918 influenza pandemic, the Black Death took on a more central role. Some historians speculated that the aftermath of COVID, like that of the Black Death, might result in a reduction in wealth inequality (McBride 2020). Others suggested we might experience a cultural rebirth, a 21st-century Renaissance (Wright 2020). Despite the lack of accurate historical data to support any long-term, broad-based reduction in inequality after the Black Death or any connection to the emergence of the Re naissance, hope for the future remained central to thinking about COVID (Alfani 2020). These supposed “silver linings” had no basis in the empirical reality of the Middle Ages, but hope, it seemed, was what historians had left to sell (Eisenberg and Mordechai 2020c).2

This article reflects upon the paradigmatic use of historical disease during the first nine months of the COVID pandemic. I first lay out some of the problems

Uses of the 64, 3 with how historical pandemics have been used during COVID-19, particularly the flattening of earlier pandemics into a single conceptual model. I then demon strate that even if pandemics offer lessons or hope from the past, they are too often used to offer false comfort, assuring people that life will improve without engaging in an understanding of the present or in challenging the status quo. I next examine how we too often neglect the experience of living during pandem ics, focusing on the beginnings and endings at the expense of understanding how people lived and struggled through them. We in the 21st century have assumed our moral, scientific, and humanistic superiority to peoples of the past, which our response to this pandemic in no way justifies. We have also focused on how our communities, whether local, national, or more expansive, might be resilient in the face of COVID-19, rather than acknowledging that resilience does not cre ate social change without understanding, and that without concerted, organized effort, grit alone does little to transform the underlying structures of societies. Us ing lessons from the past is futile without tracing the framework through which historical societies perceived the pandemics of their time and through which they accordingly acted (or did not). Furthermore, by using a contemporary capitalist impulse to draw lessons from the past and think about future possibilities, we in evitably prioritize economics above human experience and suffering, resulting in cheapened, mechanistic accounts of social struggle. Given that COVID’s impact is disproportionately borne by those least able to do so, I argue that we should instead attempt to understand how historical peoples have thought humanistically about pandemics, and to apply those different modes of thinking towards ending our contemporary inequities.

History During

Lessons from the Past, Hope for the Future

Historians first engaged in thinking about historical pandemics by directly comparing past experience with the present, often as a result of people wanting to know whether there was historical precedent for their new realities during COVID. These early forays were understandable, since most people lacked any

number

The first few months of the COVID-19 pandemic amplified the voices of histo rians of medicine, disease, and pandemics. In academic circles, various temporal, thematic, and geographic fields raced to increase programming to meet a seem ingly endless demand, as historians sought to reflect upon what had happened in the past as they lived with new, daily pandemic realities. Specialist historians pre sented to broader public audiences as well, through digital and traditional media forms, with well-known historians, and those with timely books, engaging in a variety of commentary (Clark 2020; Eisenberg and Mordechai 2020a). The next few years will likely witness an explosion in monographs devoted to histories of disease and pandemics, just as similar booms occurred in the history of capitalism after the 2008 financial crisis (Johnson 2013; Levy 2012).

First Nine Months of COVID 423summer 2021 • volume

personal experience of living through an epidemic, let alone a pandemic. These historical analyses reflected upon the past not just as a useful source of perspec tive, but also for equivalencies that could be copied and pasted directly onto the present. The first months of 2020 not surprisingly witnessed an outburst of comparisons between past pandemics and COVID-19. By the time of the first European and American lockdowns of February and March 2020, this had grown into a cottage industry. As the founder of a new podcast who suddenly found himself on CNN, I should know. As commentators and the public grappled to understand what was happening first in China and then across the globe, past pandemics were a natural way to try to understand COVID’s spread. COVID, for example, appeared to follow the path of the Black Death of the mid-14th cen tury: originating somewhere in the east, spreading through central Asia, and then into Italy (and finally, in obvious and understandable contrast to the Middle Ages, into the Americas) (Green 2020; Khanna 2020). But historical comparisons were not more useful than knowledge of 21st-century context. Current political and economic connections between China and Iran, for example, resulted in a much higher rate of initial spread of COVID in Iran. While the Black Death followed a similar transmission from central Asia to the Middle East, understanding how COVID spread did not require comparison to the Black Death (Eisenberg 2020).

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The second equivalency with the Black Death was the underlying fear generat ed from the novel coronavirus’s spread: would COVID-19 be as bad? The Black Death emerged as a point of comparison because it remains the single greatest destructive pandemic (by percentage) in human history, and because it looms large in the collective imagination. The early fears surrounding COVID-19 were amplified by its many unknowns: its virulence, its morbidity, and, perhaps most of all, how it infected people. Historians who discussed the Black Death in pub lic-facing pieces were quick to assure readers that COVID was far less likely to kill you than the Black Death (known simply as “the plague” and caused by the bac terium Yersinia pestis), but the fear lingered (Clamp 2020; Eisenberg, Mordechai, and Alpert 2020; Newfield 2020). These fears only increased when early reports about the spread of COVID suggested that it could remain on surfaces for up to three days, which led to runs on bleach and frantic efforts to wipe down anything that entered the home. This fear mirrored early 20th-century discoveries about the role of germs; lacking precise scientific knowledge, the public adopted that earlier 20th-century model as a means of preventing COVID’s spread (Tomes 1998; van Doremalen et al. 2020). That fear only dissipated once the idea of surface spread was finally (or at least largely) shown to be highly unlikely. Finally, the Black Death was a popular point of comparison for the scapegoating and xe nophobia in America and elsewhere against Asians and Asian-Americans during COVID. Segments of the population sought to (and still do) blame China—and Asians more broadly—for the spread of COVID. Indeed, the ubiquity of blaming “wet markets” as a stand-in for “strange,” foreign practices of eating, seems clear

The 1918 influenza pandemic provided mixed lessons for COVID in 2020. For example, there is little evidence of significant societal effects in the years that followed the outbreak of the 1918 pandemic. Although influenza killed tens of millions of people, there is little indication of any economic, cultural, or political impact on the 1920s in the US or anywhere else. Alfred Crosby famously framed the 1918 Influenza as “America’s Forgotten Pandemic” in the 1989 title to the reissued version of his original 1976 book. Not satisfied with this explanation, historians have speculated and sought to trace potential tangible effects through hypotheticals. What if President Woodrow Wilson had contracted the virus at the key moment of the post–World War I peace negotiations, which then sup posedly changed the political trajectory of the world? This hypothetical (and many others) notwithstanding, drawing a causal connection between the 1918 influenza and events in the 1920s is uncertain, if not impossible. Disease was the dog that did not bark. If this earlier pandemic was not forgotten, as if the entire world had collective amnesia, it was perhaps most remembered at an individu al level, even if it did little to shape large-scale social structures (Bristow 2012; Milne 2018).

Uses of History During the First Nine Months of COVID 425summer 2021 • volume 64, number 3 in retrospect, given how COVID spreads via human to human, airborne contact (Liu 2020; Lynteris and Fearnley 2020). Historians, of course, responded to these persecutions and the use of racist language to remind the public of their ubiquity in past pandemics. Bigotry feeds on ignorance; the Black Death famously led to the scapegoating of Jews (Einbinder 2018; Marcus 2020).

In addition to the Black Death, commentators employed the 1918 influenza as a useful comparison. This assessment stemmed from the superficial similarities between the two: both are airborne viruses that globalized and killed—or at the time potentially might kill—millions. The 1918 influenza pandemic also appealed to commentators because it offered photographs that looked eerily prescient: im ages of mask-wearing Americans in 1918 were easily juxtaposed with Americans today (Solomon 2020). The influenza pandemic likewise provided evidence of what might happen during COVID, with subsequent “waves” of the pandemic over the course of several years. The first wave in early 1918, as historians have shown, was less virulent than the second wave in late 1918, which was impressed upon the public consciousness from an early date of COVID’s spread. Thus, COVID, too, could get worse in subsequent “waves.” Moreover, the 1918 influ enza had been at the center for planning preparations for future pandemics during several previous US presidential administrations (Markel et al. 2006). The office overseeing those plans adopted historical data from the 1918 influenza before COVID broke out, only to be dissolved by the Trump Administration (Johnson 2020). This failure was not the case everywhere: Australia and New Zealand, among others, used 1918 planning to guide their responses to the COVID out break (Rice 2020).

3As of February 2021, this view seems likely to increase in the US and the UK, which have had some of the highest numbers of deaths but also some of the fastest vaccination rates.

Merle Eisenberg

This somewhat paradoxical set of contingent circumstances, complacency, and technological utopianism helps account for the significant number of infections and deaths from COVID in many Western European countries and the United States.3Both

426 Perspectives in Biology and Medicine

The 1918 influenza has also had relatively little impact on contemporary thinking as a result of a changed perception of medical advancements and of technology generally. In 1918, scientists and the public assumed germs could still kill large numbers of people, which large-scale pandemics such as the “Russian Flu” had done just a few decades earlier (Honigsbaum 2010). At the same time, paradoxically, the public was beginning to believe that modern medicine and hygiene could contain, or even stop, diseases. People in 1918 had a memory of what a pandemic, and infectious diseases more generally, could do, but at the same time they were increasingly optimistic that modern science, public health, and the transformation of the norms of daily life to eliminate germs might end the scourge of disease once and for all (Hays 2009; Tomes 1998). From the 1918 pandemic through the 1970s, the public began to take less seriously the impact of diseases and particularly pandemics, even if this fear never went away entirely (Peckham 2020). The elimination narrative began to shift starting in the 1980s, during the reemergence of infectious diseases around the world, especially the HIV/AIDS epidemic (McKay 2017). Despite repeated warnings from the sci entific community that a pandemic could eventually wreak havoc on the global community, expectations that a disease could disrupt individual lives or even broader society remained low until COVID (Caduff 2015; Garrett 1995; Spinney 2018).The COVID pandemic has unfolded in an inverse context from the 1918 influenza pandemic. Due to medical advancement in the intervening century and the belief in the elimination of infectious diseases, there is now a view that we have the necessary medical knowledge (or can quickly develop the medi cine) to stop a pandemic from interrupting our lives. This assumption is based significantly on technological utopianism, with an emphasis on the development of a vaccine that will stop COVID and allow us to return to our “normal” lives.

the Black Death and the 1918 influenza pandemic, are, of course, dra matically different from COVID-19 in one obvious respect. There is a stark di vide between how people live and work in 2020 versus 1918, let alone 1347. It is now possible to shut down an entire country or union of countries, while allow ing white-collar sectors to continue largely unchanged through telework. Large numbers of people today can sit in their homes while meeting with colleagues on Zoom and writing reports. Commerce and capitalism can likewise continue online and arrive via delivery to your front steps.

In the early months of COVID, some historians naïvely found the notion of plague as a great leveler comforting, even hopeful. They put forward the notion that this latest pandemic also might reduce economic inequality. Optimistic that this pandemic might duplicate the Black Death’s leveling, early commentators ignored contradictory examples, the significance of social context, and the re ality of political struggle, and, unsurprising, were disappointed (Scheidel 2020a, 2020b). In the US in 2020, by all accounts, the income gap only increased, with white-collar workers receiving steady paychecks, significant returns in the stock market, and becoming flush with cash they were unable to spend, while “essential” workers were forced to put themselves and their families at risk in order to earn a paycheck, and were likely to suffer first when businesses or local governments experienced a cash crunch. Able to isolate safely in their homes,

One example of how the plague concept misleads was the initial view that COVID would act as a great leveler of inequality. This view was based upon mid-14th-century economic data showing that in the years immediately follow ing the catastrophic loss of around 50% of the European population, some peas ants in some regions received an increase in their wages, resulting in a reduction in inequality (Scheidel 2017). Elites who required peasants to farm their lands were required to redistribute their wealth (via increased pay) given this labor shortage. Of course, this happened in only certain regions, England in particular, and affected only some people (Alfani 2020). However, the notion of disease as an economic leveler entered the plague concept, thus extending this belief in the redistribution effects of a pandemic to somehow apply everywhere and across all time, wherever disease takes a devastating societal toll. (For more details, see Geltner 2020 and Haldon et al. 2020b.)

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Problematic Paradigms and the Plague Concept

Over the past century, historians and other scholars have developed, almost un wittingly, a set of assumptions about what historical pandemics must supposedly do. The paradigmatic pandemic has long been the Black Death. Our collective memory of that experience, however partial, I have argued, has resulted in the “plague concept.” We know that the Black Death killed tens of millions, and we believe it reshaped European history in a variety of ways. We then take that knowledge and apply it as a point of comparison to every subsequent pandemic, real or imagined. The plague concept has the effect of transforming any signifi cant epidemic outbreak into an ahistorical and trans-historical event, merging all historical pandemics into a single, flat concept (Eisenberg and Mordechai 2020b). The plague concept prompts us to look for certain kinds of impacts, certain kinds of stories. Of course, the concept is itself not static: it has evolved over the past century and surely will again following COVID. Historians are constantly adding to it, subtracting from it, or altering bits and pieces. But the broader problem is the notion of sameness it fosters, the sense that disease, rather than people re sponding to disease in specific, contingent ways, makes history.

Historical pandemic research should focus instead on a different source of in formation, which we have tended to ignore: the voices of those who have lived during past pandemics. Historical scholarship on pandemics has begun to ask about the experiences of those living through an outbreak (Bristow 2012; Milne 2018; Steere-Williams 2020). Rather than the grim mortality statistics or eco nomic outcomes, the daily life of those living through past pandemics may offer us glimpses of different ways to think about our world today.

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elites cut back on discretionary spending (Horsley 2020), while workers whose jobless benefits were reduced or cut off in an effort to force them back to work, even as the pandemic continued to spread, found themselves increasingly unable to support themselves, even as COVID-19 devastated their communities (Badger and Parlapiano 2020). Social context matters, yet the plague concept has molded what we think should happen, supposedly based on lessons from the past, even as such projections have manifestly failed to appear.

The

Pandemic Experience

One experiential focus has been on the significant trauma of people who can not bury dead relatives and friends in accordance with normal practices. Procopius of Caesarea famously wrote a firsthand account of Constantinople during the ini tial Justinianic Plague outbreak of 542 CE. According to him, the situation grew increasingly worse over the course of the outbreak, and while the first people to die were buried in single graves, eventually a new office (called the Referendarius) was created that was tasked with finding new ways to bury the dead. Procopius noted that “at that time all the customary rites of burial were overlooked. For the dead were not carried out escorted by a procession in the customary manner, nor were the usual chants sung over them, but it was sufficient if one carried on his shoulders the body of one of the dead to the parts of the city which bordered on the sea and flung him down.” Moreover, throwing people into the sea was not the only way to dispose of the large numbers of dead. Some, for example, were thrown into hollowed out sections of the city walls, while others were tossed into mass graves (Procopius, 2.22–23). How many people died may never be known, but the impact of the disease on the minds of the city populace, including Pro copius, was profound (Mordechai et al. 2019). Similar attitudes to burial were ex hibited during the 1918 influenza pandemic, in which even the (relatively) small increase in the weekly dead quickly overwhelmed the morgues, and authorities had to create temporary burial jobs in Philadelphia (Crosby 1989). COVID-19 is no different: hospitals have required temporary freezer morgues on site; infamous large mass graves of unclaimed dead were established on Hart Island off the Bronx in New York City during COVID’s height; and even those who could be buried in single graves have had funerals conducted via online platforms (Jackson and McDermid 2020; Kilgannon 2020).

A second pandemic experience appears to be flight, especially of elites from cities. During the initial outbreak of the Justinianic Plague, John of Ephesus, who was traveling through what is now Israel and Syria, remarked that entire villages were empty as people fled into the hills to avoid the plague. This was far from unusual. Paul the Deacon recorded similar empty villages in Italy during an out break of the plague a century later. While some entire villages fled, elites benefit ted the most. They not only could afford to flee but also left with large amounts of their wealth intact and available, which is why John of Ephesus’s account is focused on the greed of elites in trying to abscond not just with their own wealth, but with their neighbors’. According to Theophanes Confessor, during one of the last outbreaks recorded in the middle of the eighth century, the Emperor Constantine V fled from the capital of Constantinople to a nearby city. While the writers of the time condemned his actions, his flight did not disrupt the workings of the government. He continued working as before, but in a new place. COVID-19 has resulted in a similar experience. Elites with their excess capital and ability to work remotely have been able to flee urban centers, famously New York and Paris, and move to rural and suburban locations to avoid the threats and inconveniences of COVID. The focus here on how different groups—those with the power to move and those without—is a far more useful approach to under standing, and critiquing, the culture of the time, than simply noting pandemics leave a path of death and destruction (Bellafante 2020; Onishi and Méheut 2020).

Historians of disease and other disasters (not to mention many other scientific fields) have often worked within a resilience framework. Within that frame work, societies are conceived as complex adaptive systems that have structural features with significant roles for humans and their belief systems. The complex interplay of humans and structural features provides the possibility that states can resolve instances of social stress—crises—within those belief systems (Cumming and Peterson 2017; Haldon et al. 2020a). Many historical analyses of pandemics, but especially those of the distant past, have subsumed the experience of people who lived through them to questions about how the society, regardless of its size,

Resilience and Transformation

The Justinianic Plague example highlights the differences between how societies define “elites.” In the eighth century, the elites consisted of the emperor and his key administrators, who were both wealthy and non-wealthy individuals, while today the flight of people from cities is linked almost entirely to financial wealth. This one example reveals the inappropriateness of applying the past to the present without an understanding of that cultural past. It also demonstrates how contem porary culture hardly represents a moral improvement upon premodern people simply by virtue of modern medicine. Contemporary culture too, can react to a pandemic in altruistic or callous ways.

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The flattening of the pandemic past into a societal resilience model misunder stands how people in the past thought about their world, how they experienced a disease at an individual level, and inappropriately uses past pandemics to con form to present needs. It is not enough to try to find silver linings during past pandemics, since doing so ignores the plight of the individuals who lived through them and suggests that past realities might simply be reused in the present. The failure to contain COVID in the US resulted not just from President Trump’s disbanding the response team that had put together a plan for addressing a pan demic such as COVID-19, but also from a collective failure to think outside the structural straitjacket of contemporary cultural norms. Arguing about whether past pandemics caused a reduction in inequality teaches us nothing, because the obsessive focus on saving “the economy” did not exist in the past: the idea of the economy as a unique sphere that should be privileged above all else is a creation of the 20th century (Mitchell 2014).

was resilient. The pandemic then simply becomes an autonomous actor impos ing its biological power on another biological specimen—a pathogen against a human, with human society simply trying to prevent or at least limit the patho gen’s impact—and from today’s perspective, the primary reason the premodern world is unable to contain the pathogen is the absence of modern medicine. The resilience framework is inherently conservative, because the goal of resilience is defined as a return to the status quo. Death, particularly of the poor and vulner able, is simply accepted. Additionally, the resilience framework is self-serving to those who center capitalism, and particularly the free market, because while the market may be resilient, individuals—who die in large numbers—clearly are not. In a series of separate articles with several colleagues, I have examined reactions to these moments of stress, the costs of resilience, and the intended and unintended consequences of this resilience. What appears quite clear from these historical cases—which span from the early middle ages to the early modern period—is that the costs are not shared equally and, in fact, are borne most significantly by the least powerful members of society (see, for example, Haldon et al. 2020b).

Our search for easy economic answers exists across all spheres of our lives today. Looking for answers about the future of the sports industry in a postCOVID world, for example, based on what happened in 1918, is futile. The place of sports in shaping daily life and culture was fundamentally different in 1918 than it is in 2020. Simplistic predictions, such as that COVID will reduce the number of collegiate sports, overlooks how differently people thought in the past. More importantly, it prevents us collectively from making choices that will shape a future that benefits us equitably and morally. For the past to be of use, we must first acknowledge how differently people once thought and then engage in the slow, hard work of examining ourselves today.

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Uses of History During the First Nine Months of COVID 431summer 2021 • volume 64, number 3

Yet, if the world is able to prevent another globalized pandemic for five or 10 years after COVID, hospitals and nursing centers are likely to refuse to replenish any stocks of PPE as an “onerous” business expense. As long as economics drives these kinds of decisions, we will simply be left to mourn again the enormous numbers of preventable deaths at nursing homes. Multiple waves of COVID in fections were initially predicted, and this prediction resonated with the media and public, but because most people, including governments, could not be bothered to take appropriate actions, the predicted waves were allowed to occur. We will need to change our thinking in order to prevent additional deaths. We must use different ideas from the past to change the present, aiming for better outcomes during and after the COVID-19 pandemic. At an initial level, states need their populations to unify during COVID as a way to ensure social cohesion and to prevent the deaths of their most vulnerable members. Social cohesion is necessary, for example, to ensure that everyone wears a mask in coun tries that are unwilling or unable to impose more coercive measures to reduce infection rates. Yet that is the bare minimum. On a broader level, we must take into account the diversity of experiences and impacts and replace an econom ics-centered model as the sole basis for analysis. There is no point in returning to a normalcy in which in which capital defines who lives and increasingly who dies. Nothing changes just because something—in this case, the COVID pan demic—happens: rather, change happens because of how people react to what has happened as they organize, mobilize, and march.

Conclusion

A key goal for historians should be to recognize the different ideologies that governed how cultures previously responded to pandemics in order to provide us new ways of thinking about and transforming the inequalities of the society in which we live. Resilience requires not merely survival (of the fittest) but also attempts to transform the reality in which we find ourselves. One result of the COVID-19 pandemic that already appears “obvious” is that hospitals, nursing care centers, and other high-risk locations must retain on hand significant quan tities of personal protective equipment (PPE) and other supplies to prevent dev astating consequences. The surplus approach seems to have helped Taiwan, for example, reduce the number of deaths and researchers, even before the pandemic suggested the US and other countries adopt the same practices (Chen et al. 2017).

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Cover Illustration: Graffiti on a Wellington, New Zealand, street. Photo © Emily Greenbank. Used with permission This issue of Perspectives includes: Special Issue on the COVID-19 Pandemic Edited by Cherie Lacey and Annemarie Jutel Editors’ Introduction: More Than a Virus Cherie Lacey and Annemarie Jutel The Trials of Solidarity: A Defence Rubén A. Gaztambide-Fernández Cells in Hiding Rebecca Gray Ontological Uncertainty and Ontological Threat: COVID-19 and the UK Michael P. Kelly In Case the Sun Disappears Julia Schneider “In This Together”: Diagnosis and the Imaginary Nation Annemarie Jutel The Unexpected Perks of Flatting During Covid-19 Ruby Solomon Autopsy of the Living: Elderhood, Race, and Biocitizenship in the Time of Coronavirus Jennifer Lum You Must Change Your Life: A Journey Toward Love and Kindness Kathleen M. Kuehn NZ COVID Diary Annemarie Jutel Intimacy in Isolation: Podcasting, Affect, and the Pandemic Molly Robson Victors,Victims, and Vectors Rebecca E. Olson, Adil M. Khan, Dylan Flaws, Deborah L. Harris, Hasan Shohag, May Villanueva, and Marc Ziegenfuss Unpacking Michael McLane Uses of History During the First Nine Months of COVID Merle Eisenberg