Author: admin

Book Reviews

Jane Ward, The Tragedy of Heterosexuality, NYU Press, 2020

THE STRAIGHTS ARE NOT OKAY.

The tragedy of heterosexuality is this: modern straightness dooms once-hopeful, loving couples to share dull, frustrating, and lonely lives together. After all, men are from Mars, women are from Venus, and what’s a heterosexual to do about it? Against this dismal state of affairs, Jane Ward’s The Tragedy of Heterosexuality offers a scholarly, empathetic intervention from the perspective of queer culture. Ward’s book reveals that the titular tragedy is rooted in the misogynistic ideology permeating straight culture, according to which women are at once objects of desire and derision. In a culture animated by this antinomy, women and men are very different creatures and, by the same token, they are bound to struggle in communicating their needs to one another, to say nothing of living fulfilling lives together. Uncrossing these lovers’ stars, Ward contends, requires adopting a form of heterosexuality—deep heterosexuality—that excises misogyny from straight culture, thereby making room for a version of heterosexuality in which men not only lust for women, but actually like them.

But, how did this situation come to be? Relying on the work of feminist historian Afsaneh Najmabadi among others, Chapter 2 draws readers’ attention to the historical tension that gives rise to this tragedy. Prior to the social evolution of modern companionate heterosexuality, marriage was an explicitly patriarchal, property-centric institution. Across many cultures, wives were merely a tool for property transfer and procreation. In patriarchal contexts like this, Ward contends, the possibility of love—the heart of today’s understanding of straightness—becomes suspicious and emasculating. A man who is devoted to a woman is subordinated to her. Thus, wherever the transition away from property-based marriage begins, it threatens the long-standing patriarchal social order (Ward 2020, p. 38). Such threats do not go unanswered.

Ward focuses on the development of this tension in the United States, with particular attention to the influence of the eugenics movement and the relationship between heteronormativity and American white supremacy (Ward 2020, p. 39). Eugenicists of the early 1900s held that the preservation of white society required happy white homes, because happiness would lead to fecundity. Thus, the happy heterosexual home became an ideal of American life. Ward’s archival analysis reveals that this ideal was a demanding one: men and women of the time routinely loathed both the marriages in which they’d found themselves and the partners to whom they were bound. They regarded one another’s bodies as unfamiliar and disgusting (Ward 2020, p. 39), and women, routinely raped on their wedding nights and knowing little, if anything, of what they were about to experience, came to know their husbands as purveyors of an unspeakable, ungratifying, and ugly act (Ward 2020, p. 41). This, of course, is poor soil for seeds of love and companionship.

In observation of this fallow state, sexologists at the Eugenics Publishing Company pioneered the techniques of the heterosexual-repair industry. This industry is central to Ward’s project: While it aims to diagnose and treat the problems that plague straight couples trying to forge lives together, Ward observes that the industry takes a decidedly heteronormative tack. In the early days, titles like the 1919 Sane Sex Life and Sane Sex Living normalized the disgust men and women felt for one another and urged them assuage it through professionally guided education and extensive rituals of “hygiene”, such as shaving, perfuming, douching, and so on (Ward 2020, p. 44). Emphasizing the otherworldliness and incomprehensibility of the opposite sex, even the earliest products of the heterosexual-repair industry advised men and women to lean into the analysis that misogyny provided and choose the solutions it placed in easy reach.

By the 1950s, the industry shifted away from addressing the shortcomings of couples considered together, instead focusing on the many failings of the women in those couples. Women were advised to groom not only their bodies, but also their personalities. As explained by Dr. Edward Podolsky’s “10 Commandments for Wives”, listed in Sex Today in Wedded Life: A Doctor’s Confidential Advice, the important and world-weary men in women’s lives needed wives who could overcome the desire for petty household chatter, ensure a warm, happy, clean home, and maintain an enticing appearance (Ward 2020, p. 49–50). As time went on, Ward illustrates, women’s emotional and physical labor remained the panacea of the heterosexual-repair industry, even as it adopted a more feminist tone in the 80s and 90s. Despite identifying misogyny and male entitlement problems, still the industry was unequivocal: Where a marriage is lacking, a woman is slacking.

But, capitalism loves a vacuum. Chapter 3 takes the reader on an empathetic ethnographic tour of the relatively new, masculine side of the heterosexual-repair industry: the seduction industry. Here, more than anywhere else, Ward’s commitment to empathy is challenging. As Ward traces the seduction industry’s lineage in pick-up artist culture and shares her experience attending in-person seduction industry events, it is difficult to peel one’s attention away from the fact that this lineage is the same one that inspired Elliot Rodger’s explicitly misogynistic 2014 killing spree in Isla Vista, California (Ward 2020, p. 85–6). Nevertheless, Ward manages to conjure a scintilla of empathy for these men. In her accounting, the seduction industry has come a long way from its objectifying, misogynistic beginnings. Today’s “seduction coaches” still tell the awkward, self-disparaging men who seek their advice that their courting woes are not their fault. Rather, these failures are rooted in the fact that it is now women, not men, who control seduction and dating. The evolution of the industry comes in its response to this situation: Success, coaches argue, requires that these men see the world through women’s eyes. To avoid seeming creepy, they must understand that women rebuff their advances not because they see them, in particular, as bad men or because they hate men, but rather because these women must contend with a crushing tidal wave of dubious, sometimes-frightening advances. They must understand that “bitch shields” and protective “AFOGs” (the “alpha females of the group”) are necessary strategies for surviving the onslaught (Ward 2020, p. 90). Nevertheless, these shifts in perspective are not aimed at the liberation of women or genuine empathy for their experiences, despite adopting certain feminist insights and language. Rather, they aim, as one of Ward’s interviewees explained, at getting “more high-quality pussy” (Ward 2020, p. 81). The spark of empathy is fleeting.

Together, chapters two and three illustrate a key insight of Ward’s analysis. While the tactics of the heterosexual-repair industry are carefully tuned to its distinct audiences, it employs an unwavering strategy: teach constituents to understand the vast, gender-based differences between them and their mates, then teach them to manipulate those differences to get what they want. Straight relationships, on the industry model, are relationships of adversarial opposites. Repairing them requires clever new tactics—not an interrogation of the gender roles that define the battlefield. This investigation of the heterosexual-repair industry shows that it embodies Ward’s thesis: despite the ongoing shift away from property-based marriage, straight culture remains tragically misshapen by misogynistic, patriarchal ideology. In her analysis of the industry, we see straight culture not only reify, but also reinforce and normalize these assumptions: from the concept of natural difference (Men are from Mars, Women are from Venus), to the primacy of homosocial status (The Game), to domestic asymmetries (Act like a Lady, Think Like a Man).

Ward attributes her clear vision of this misogynistic throughline to her queerness. Whereas heterosexuality and its many scripts are defaults into which most are socialized, queer lives are discovered and carved out in defiance of this pressure. Despite the fact that this, along with other difficulties of queer life, is widely regarded as a tragedy of its own, Ward’s perspective is joyous. She revels in the freedom and self-ownership of queer culture and queer relationships, and it is against this backdrop that the contrast with straight culture is so visible. Ward is also very much aware of the privilege that the other particularities of her position—not only as an able-bodied white woman, but also as a Professor of Gender and Sexuality Studies at the University of California, Riverside—provide her. For this reason, Ward relies heavily on the perspectives and analyses of queer women of color in her work, drawing on Patricia Hill Collins, bell hooks, Audre Lorde, and others.

The voices of BIPOC queers also come alive in Chapter 4, which provides a litany of queer diagnoses of the ills of straight life: boredom, mutual dislike, lack of imagination, and so on. Largely drawn from anonymous surveys of Ward’s own social circle, these commentaries may not provide a broad-based sociological study, but they are nevertheless passionate, funny, and poignant. For example, observing straight men and how straight women treat their partners, a queer Latina commentator explains, “My guard is always fully up when I meet a new straight man. He might hurt anyone, including himself at any moment to prove how manly he is […] Also the way straight women coddle and excuse away the behavior of their partners as if they are children. They are enabling them to do dumb shit,” (Ward 2020, p.133). Turning to relationships themselves, another of Ward’s commentators writes, “Let’s talk about the sitcoms straight folks keep making for each other. Do straight couples even know they should actually like each other? Because I don’t think they do,” (Ward 2020, p. 127).

This contrast between queer and straight relationships brings out another of the book’s many insights: it isn’t that queer relationships are free from strife, but rather that queer culture assumes that the solutions to those struggles are to be found in the partners themselves—not in prefabricated gender roles they occupy. Through Ward’s telling, one gets the feeling that straight culture asks couples to make a poor bargain: you may gain the security and legibility of well-trodden paths, but at the cost of your freedom to shape your life according to your own, genuine needs and desires.

In her final chapter, Ward sets out to define and endorse deep heterosexuality as an alternative to the morass of unsuccessful remedies canvassed throughout the book. For this, Ward returns to fellow queer thinkers—in particular, the lesbian feminists of the 1970s, who took the liberation of women as an object of not only their politics, but also their love. In recent years, feminists have grown rightfully wary of the lesbian separatists and their contemporaries, taking note of the ways that essentialism and universalism led to an exclusionary, transphobic perspective inconsistent with today’s feminism. Nevertheless, as Ward rightly notes, we are often too quick to abandon those who came before us. Revisiting this movement, Ward finds the resolution of a puzzle that both they and straight men must grapple with: How does one square the carnality and felt objectification of lust with the goal of seeing women as fully human partners? Or, as Ward puts it, how does one learn to “fuck women feministly” (Ward 2020, p. 159)?

For the lesbian feminists in Ward’s sights, such as the Radicalesbians, these were not separate things. Women loving women is, in itself, a liberatory act. Seeing another woman’s body as desirable, as a site of pleasure, is a mirror in which one’s own body becomes the same. This sexual liberation can only be understood, in Ward’s analysis, as one facet of the broader liberatory project of being woman-identified. To be woman-identified is to seek women’s liberation in all the facets of their lives. To be woman-identified is to “crave hearing women’s voices, thirst for women’s leadership, ache to know women’s full humanity, and thrill at women’s freedom,” (Ward 2020, p. 32). It is an orientation toward the collective; to women as much as it is to any particular woman. But, as Ward points out, men who express something like this woman-identifiedness in today’s society, who show too much interest in women’s art or art about women’s emotional and interpersonal lives ”risk being perceived as a bit ‘gay’,” (Ward 2020, p.157).

While her queer forerunners provide inspiration, Ward stops short of their separatism and recommendations of “queering”. Instead, the concept of woman-identifiedness is employed as a tool by which to honor the ostensibly guiding impulse of men’s straight identity: love for women. This, I think, is worthwhile. While the exhortation to abandon straight life to one degree or another is exhilarating and liberatory for many queers, and therefore may appear universally liberatory, we cannot assume that this is true for people who genuinely and deeply identify as straight. Some people really are, and really like to be, straight. Thus, in Ward’s proposal for deep heterosexuality, we see an approach interested in the “actualization, rather than undoing” of straightness (Ward 2020, p. 157).

As the framing in terms of Radicalesbian feminist role models might suggest, Ward addresses this final chapter to men. She urges men to reorient their sexuality—to become not just women-oriented, but women-identified. She urges men to yearn for women’s liberation in the same moment as they lust for them, drawing exemplars from the vivid memoirs of Audre Lorde, Dorothy Allison, Jeanne Cordova and others. She urges men to set aside the conquest of women’s bodies in favor of centering their pleasure. In illustration of this point, Ward considers stone butch sexuality. Stone butches are masculine women who eschew penetration by their partners and often refuse sexual touch. But, these preferences do not render them sexually inert. Rather, stone butches’ erotic satisfaction often lies in the pleasure they provide to their partners—in the giving, rather than the receiving (Ward 2020, p. 169). Male orgasm, in other words, need not be the focus of masculine eroticism.

As moving as this example is, however, I wonder whether the promise of men’s woman-identification can be a genuine parallel. Centering women’s pleasure is a good thing, and Ward is certainly correct that many heterosexual relationships would be vastly improved by this alone. But, if we take this superficial content as the lesson of the stone butch example, we miss its rich texture. We miss the transgression-in-authenticity of butch identity. We miss the vulnerability of opening one’s queerness to another person, especially as it was during the era from which Ward draws this chapter’s inspiration. We miss the illegibility of stone sexuality from a straight perspective. If decades of feminist standpoint theory have taught us anything, it is that these contextual trappings are essential—the masculinity acquired when we pass this experience through a heterosexual sieve is simply not the same.

Perhaps this is better understood through the perspective of the revelation. The revelation of queer sex, especially for those of us socialized as women, is seeing that things you learned to loathe—the things about which you were told that people who love women find them disgusting—are actually sexy. It is the visceral experience of the falsehood of those lies. By contrast, Ward’s analysis and prescription revolves around “sameness” and
“difference”, and teaching men to find sameness even with a female partner. But these philosophical abstractions are not the stuff of visceral revelation. This is not to suggest there is nothing to this idea for men. Men, too, can shed the lens of heteronormative expectation and let scarred, puckered, unshaven, and unplucked bodies delight them. They can (and should!), as Ward suggests, see this loving of women’s bodies as part and parcel of feminist liberation. But, this is not the same. This perspective does not free women from the further heteronormative, patriarchal expectation that men’s appreciation of their bodies is a fundamental source of value—it is merely a less onerous instantiation of the same.

This raises a final question: What does deep heterosexuality mean for women? Ward’s proposal is asymmetrical—it provides recommendations to men, but is largely silent about women. There are plausible reasons for this. Perhaps, insofar as Ward’s proposal is a corrective prescription, women do not need such correction; perhaps they are already appropriately oriented toward men. From a more structural perspective, it is men who hold power in our still-patriarchal social context, and so perhaps the onus lies on men to change it for the better.

Even so, straight women are in a strange position. Just as straight men do not lust for women in the way that lesbians do, straight women do not lust for men in the same way that gay men do (a fact illustrated in Ward’s recounting of her first experience in a gay men’s sex shop, where she “encountered a barrel full of lightly stained and dingy-looking ‘used jock straps’ for sale,” (Ward 2020, p. 165)). But, they are also inextricably bound up with men. Moreover, just as men dislike women, women dislike men, at least according to books like How to Date Men When you Hate Men. Given these situational parallels, one might expect deep heterosexuality to have a parallel message for women. And yet, the application is awkward: Should women become more man-identified? Should they “direct their energies” toward men? Should they yearn for men’s voices and leadership and invest themselves in men’s projects? Obviously, these are unappealing recommendations—they reproduce existing social imbalances and many are already true. So, if deep heterosexuality means anything for women, it is likely very different from what it means for men. I hope it means something for women, however, lest they be left waiting for men to “direct their energies toward women”.

While these questions about deep heterosexuality are a challenge, they are made to feel vivid and urgent by the insightful, empathetic, and entertaining chapters that come before. The Tragedy of Heterosexuality offers a provocative, thoughtful history of the awkward adolescence of straight identity, and provides a compelling case for the need to nurture its maturation in the hopes of turning heterosexuality away from tragedy toward the kind of liberation and joy at the heart of queerness.

Catharine Saint-Croix
University of Minnesota
Twin Cities

References

Gray, John. 1992. Men are from Mars, Women are from Venus. New York: HarperCollins.

Harvey, Steve. 2009. Act Like a Lady, Think Like a Man. New York: HarperLuxe.

Long, Howard. 1919. Sane Sex Life and Sane Sex Living. New York: Eugenics Publishing.

Podolsky, Edward. 1947. Sex Today in Wedded Life: A Doctor’s Confidential Advice. New York: Simon.

Roberson, Blythe. 2018. How to Date Men When You Hate Men. New York: Flatiron Books.

Strauss, Neil. 2005. The Game. New York: HarperCollins.

Ward, Jane. 2020. The Tragedy of Heterosexuality. Sexual Cultures. New York: New York University Press.

Book Reviews

Maneesha Deckha, Animals as Legal Beings: Contesting Anthropocentric Legal Orders, University of Toronto Press, 2021

Animals as Legal Beings is a new and important monograph-length treatment on the inadequacies of both a property and a personhood approach to the legal status of nonhuman animals. In line with decades of literature arguing for the abolishment of the property status of animals, Professor Maneesha Deckha, Professor and Lansdowne Chair in Law at the University of Victoria, British Columbia, Canada, adds a novel twist: personhood, the typically preferred alternative to a property status for nonhuman animals, is not a good option. Why? Deckha argues that personhood is too anthropocentric and too embedded in problematic Western liberal humanist traditions to work for nonhuman animals. Drawing on a truly impressive wealth of scholarship in feminist and post-colonial studies, as well as animal care ethics, Deckha posits a new legal category better able to protect animals from exploitation: beingness.

The first chapter of the book sets out the “legal welfarist” logic animating federal anti-cruelty law in Canada. For those familiar with the work of Gary Francione, the argument here will be familiar, namely, that welfarist approaches to improving the situation of nonhuman animals will inevitably be inadequate because nonhuman animals will never win when their interests are balanced against the interests humans have in their exploitation (Francione 1995). Like many anti-cruelty statutes in the United States, the Canadian Criminal Code prohibits causing “unnecessary” pain, suffering or injury to an animal. Like Francione, Deckha argues that the Criminal Code provisions have been interpreted in a narrow way and applied to “socially deviant acts and not what mainstream society considers socially acceptable animal (ab)use” (51). Deckha provides an excellent history of the 1998–2000 (failed) attempt to move animals out of the property section of the Criminal Code (see pp. 56–60), along with the litany of other failed attempts until an amendment that more-or-less left the provisions as they were but increased the fines and penalties available passed successfully in 2008 (60–67). It covers the 2016 attempt by Liberal MP Nathaniel Erskine-Smith, whose Private Member Bill failed on its second reading and (some) parts of that Bill, which were taken up in separate successful laws such as a ban on the import of shark fins. This discussion also includes the widely celebrated ban on captive cetaceans, as well as a more obscure loophole relating to bestiality created by an off-beat 2016 Supreme Court of Canada decision (67–71). Lesli Bisgould’s Animals and the Law was published in 2011, before a number of these developments, and so Deckha’s chapter provides a helpful update (Bisgould 2011). It would be perfect for use in a Canadian animal law class, especially one where the instructor would like to familiarize students with the Francione perspective. Deckha adds to it the point that in addition to a problematic property framing, many animal cruelty laws also have a colonizing function insofar as they have often been adopted “to cultivate ‘civilized’ and virtuous character among so-called lower classes and racialized groups” (44). The well-supported conclusion here is that “animal suffering [is usually] actionable only in an extremely narrow set of circumstances”: where “majoritarian sensibilities” support it (75).

The second chapter sets out what is wrong with personhood, arguing against those, like Steven Wise and the Nonhuman Rights Project, who would mobilize the concept to better protect nonhuman animals. Given the choice between property and personhood, personhood is the better choice, Deckha writes; however, it cannot be used because it promotes “the problematic liberal humanist affinities” (87) that have not worked well for vulnerable classes of humans and are unlikely to work for the even more vulnerable classes of nonhumans. The issue is that “personhood was reserved for an elite sector of humanity: white, able-bodied, cisgender heterosexual men of property” (88). Even if some nonhuman animals can make it in, by proving that they are “human-enough” (88), e.g. chimpanzees, elephants, or cetaceans, this route “inevitably highlights the differences and putative inferiority of the excluded animals … as well as the included animals[’] .. residual embodied non-humanness” (89). In other words, they are included but not on their own terms. This strategy intensifies existing hierarchies (93). In Cary Wolf’s terms, the approach might work for the “humanized animals” but not those who are at the bottom, the “animalized animals” (93). Deckha writes: “And it is the latter category into which most animals (consider farmed animals and trawled fish) are placed” (93). She continues, “[e]fforts to personify some animals will thus necessarily accent the thingness of other beings … pushing them deeper into the realm of property/thing” (94). This is all very persuasive and thought-provoking and might be helpfully used in an animal law course after reading Wise’s work or watching the documentary Unlocking the Cage (2013) and familiarizing students with the personhood approach.

The third step in Deckha’s argument is the turn towards “being” as the post-anthropocentric legal ontology that would follow, first, the abolition of a property status, and, second, a turn away from personhood. Here is where things get a bit controversial. The promise in the book is that the new subjectivity, “being,” will be more animal-centered or animal-friendly (8, 9), “better respect animals” (123), and will not “bear the imprint of either liberal humanism or anthropocentrism” (9). However, even getting out of the gate, many people will hear in “being” not a distancing from the Western liberal humanist philosophical tradition but a pretty direct connection to it given the centrality of the term “being” in Martin Heidegger’s famous (and notoriously challenging) work Being and Time. This is an exceedingly human exceptionalist text, given the lofty attributes of Dasein such as an apprehension of self that includes things like self-reflexivity regarding death and the pondering of one’s own existence (Wheeler 2011). This would, one would think, make it an extremely un-animal-friendly category, since even if other animals are gifted/afflicted with this same kind of consciousness, we have precious few ways to know about it. Hence, for those who spent time as I did as an undergraduate being tortured by this text, Deckha has an up-hill battle it terms of changing the connotation of the term. And so she launches in, as she puts it, “with apologies to Martin Heidegger” (121). It quickly becomes evident that Deckha means something very different than Heidegger or any of the other dead white male philosophers one would encounter in traditional mainstream philosophical study. Rather than the disembodied, independently autonomous and rational subject of the standard Western philosophical texts like Being and Time, Deckha’s “being” is embodied, relational, and vulnerable (see chart positioning these opposites, 122). She writes about each of these qualities in turn, drawing on a the work of a wonderful array of feminist thinkers, for example, Jennifer Nedelsky on relationality (127–30). Deckha also engages with Lori Gruen’s theory of “entangled empathy” (100–101). I found the discussion of vulnerability, specifically comparing the more liberal approaches of Martha Fineman and Ani Satz, as compared against Judith Butler, particularly rich and informative (see 130–41). Given her reconceptualization of the term, filling it with content that one would not necessarily expect to see, I rather thought Deckha should make the same move as Heidegger did in Being and Time and capitalize her sense of being. This would demarcate it from other ways in which the word is used, specifically in laws relating to nonhuman animals.

The example I have in mind here, one that Deckha surprisingly does not discuss, is the 2015 revision to the Civil Code of Quebec, which adopted the following provision: “[a]nimals are not things. They are sentient beings and have biological needs” (art. 898.1, https://elois.caij.qc.ca/CCQ-1991/ article898.1). It was inspired by France’s recognition of nonhuman animals as “living beings endowed with sensibility” adopted the same year (Boyd 2017, 29). At first blush, the Quebec law would seem to be exactly the kind of change Deckha is recommending, namely, abolishing the “thing” status for nonhuman animals and endowing them with a “being” designation and so would not be “a complete novelty in Canadian law” (123). However, the Quebec provision is located in the book of the Civil Code on property (biens), which implicitly signals that even though nonhuman animals are recognized as sentient and “not things,” they are still property. In case that was too subtle, the provision also explicitly states that the recognition of sentience and biological needs does not change any other laws “concerning property [that] nonetheless apply to animals.” The Quebec example is important I think not just because Deckha is centrally focused on Canada but also because it shows that it is not the use of the term itself that will do all the work here. As Deckha herself says, “[a] change in legal subjectivity would not magically erase the culturally precarious status most animals bear” (173). Deckha’s concept of Beingness (and here is where the capital would be used to good effect) would signal this; small-b being in Quebec and France is used in a way that does nothing to interfere with the instrumental use and commodification of animals and animal products. The same is true of other civilian jurisdictions, which have adopted provisions in their civil codes setting out that nonhuman animals are “not things” (Austria and Germany) or “not objects” (Switzerland), and they use a similar proviso or disclaimer regarding any other laws relating to property (see Eisen and Stilt 2017, paras. 18–25, Germany; 26–35 Switzerland; 42–45 Austria). Deckha is clear that “beingness is meant to replace property, not coexist with it” (155).

Is being or Being less anthropocentric? Again, I think it depends a great deal on how you hear it, specifically, do you hear an implicit “human”? In that respect, “being” is actually quite similar to “person” insofar as one might think first and foremost “human being” (in which case most nonhuman animals are never going to make it) or one may immediately think “empty vessel in which any number of rights may or may not be poured,” i.e. the neutral entity-like legal person or “cluster” concept (Nafine 2009, Kurki 2020). You would think that judges will hear primarily the second vessel meaning, but they will not if they are being presented with evidence about the complex social and emotional lives of specific nonhuman animals and, generally, to emphasize how much like humans they are that they deserve a right like habeas corpus, which protects a person from unlawful detainment, the strategy of the Nonhuman Rights Project litigation. It is difficult, and a bit confusing, to ask these judges to think about person in the human sense and person in the neutral vessel sense at the same time. If they yes to the latter, they will easily be taken as having said yes to the former, when that is likely not what they want. And so, they say no to everything.

Deckha discusses the vessel or “cluster” concept of “person” (e.g. 86) but not as much as one would expect in a proposal recommending a shift away from personhood as the legal subjectivity for nonhuman animals. The focus on anthropocentrism suggests that she has more the human being sense of person in mind. Hence, the question of what gets lost by abandoning the vessel or cluster concept of person is not addressed, specifically the important question of whether beings or Beings will have rights. Deckha says that “being” should be as protective as personhood is, which suggests that nonhuman animals would have rights, not just the small-r nineteenth-century kind under (largely ineffective) animal welfare or anti-cruelty statutes, but also the Big-R twentieth-century sort that many animal advocates call for. However, if nonhuman animals are capable of being rights holders, then they would seem to be already legal persons in the second sense, whether or not we like the residual (and perhaps inevitable) anthropocentrism involved. If that is true, why give them a status that is likely to be interpreted as a “second-best category” (160)? I think it would be better to say that what they have is a species of legal personhood, a nonhuman “quasi” kind, which would make it clear that even if it is second-best they are eligible for rights, not just the ones that they already have but other better ones (see Fernandez 2019).

Successful rights of nature initiatives might come to de-anthropomorphize personhood itself, at least in the human being sense (Boyd 2017). In fact, they are already doing this, as we have seen with rivers around the world (in India, New Zealand, and Columbia), lakes (like the section of Lake Erie in Ohio), forests (in New Zealand and the Amazon rainforest), which have all become legal persons in recent years, not in the human sense but in the vessel or cluster sense of being able to bear rights (Samuel 2019). As this movement becomes more normalized and personhood develops for important but non-living and breathing entities, we may start learning to hear “person” in non-anthropocentric terms. The rights of nature movement has the potential to be good for nonhuman animals, who given their sentience will be seen as deserving a share of these rights and protections. They may even be seen as more deserving, since, as Deckha puts it, “living bodies are more vulnerable to violence, to intense pain and suffering and to death” (157) than the other candidates for personhood she discusses in the last chapter of the book (plants, artificially intelligent machines, bacteria, coral reefs, and rivers and lakes). In this discussion she acknowledges that sentience is problematic (e.g. a negative focus on suffering) (see 145–46, 152–53) but it is an important way to prioritize (if not rank) claims for the protection of the interests of a variety of entities.

Even if “being” does not come to replace “person” completely, Deckha’s argument, that we need to learn to include and respect nonhuman animals without occluding their nonhuman animality, i.e. accept them on their own terms, is an extremely important ethical argument. It will certainly help get us to a place where we can, as she elegantly writes, “value animals not as humanity’s Other but as beings of value that can exist outside of instrumental relationships with humans and other legal persons and be protected against instrumentalization and commodification” (25). I just would not like to see a surrender of the way in which nonhuman animals are still a kind of legal person, in the vessel sense, given the potential this has to help animals fit within an (admittedly pathological) legal system.

Angela Fernandez
University of Toronto
Toronto, ON

References

Bisgould, Lesli. 2011. Animals and the Law. Toronto: Irwin Press.

Boyd, David R. 2017. The Rights of Nature: A Legal Revolution That Could Save the World. Toronto: ECW Press.

Eisen, Jessica & Kristen Stilt. 2017. “Protection and Status of Animals.” In Max Planck Encyclopedia of Comparative Constitutional Law. Edited by Rainer Grote, Frauke Lachenmann & Rüdiger Wolfrum. Oxford: Oxford University Press. <http://oxcon.ouplaw.com/view/10.1093/law-mpeccol/law-mpeccol-e71?prd=MPECCOL>

Fernandez, Angela. “Not Quite Property, Not Quite Persons: A ‘Quasi’ Approach for Nonhuman Animals. 2019. Canadian Journal of Comparative and Contemporary Law 5: 155–232.

Francione, Gary L. 1995. Animals Property and the Law. Philadelphia: Temple University Press.

Kurki, Visa A.J. 2019. A Theory of Legal Personhood. Oxford, UK: Oxford University Press.

Naffine, Ngaire. 2009. Law’s Meanings of Life: Philosophy, Religion, Darwin, and the Legal Person. Oxford, UK; Portland, Or: Hart Publishing.

Samuel, Sigal. 2019. “Lake Erie now has legal rights, just like you.” Vox. February 26, 2019. <https://www.vox.com/future-perfect/2019/2/26/18241904/lakeerie-legal-rights-personhood-nature-environment-toledo-ohio?fbclid=IwAR3fsESix5Avz6wrcJAhqpaCMWVCML
wZhKIUoacRKpySg36JzscnbZkFkfI>

Wheeler, Michael. 2020. “Martin Heideggar.” In The Stanford Encyclopedia of Philosophy. Edited by Edward N. Zalta. <https://plato.stanford.edu/archives/fall2020/entries/heidegger/>

Book Reviews

Jeremy Snyder, Exploiting Hope: How the Promise of New Medical Interventions Sustains Us—and Makes Us Vulnerable, Oxford, 2020

Snyder’s book ‘Exploiting hope’ is as relevant as ever. His book is about the hope of desperate individuals seeking treatments that cannot (yet) be found in conventional medicine. The book engages with hope in the setting of phase I cancer trials, stem cell interventions, right-to-try laws and crowd funding, offering a new language to explain our discomfort with some of these quests. At the same time the book seems particularly relevant given current events. While despair and quests for novel interventions touched only a few patients with specific conditions up to a year ago, they are now familiar to us all. Early on in the COVID-19 pandemic all of us probably experienced hope for interventions that could save us from the imminent disaster.

Beyond theory and case studies, the book’s worth thus shows in its ability to label some of the recent discourse on hope. Issued preceding COVID-19, the pandemic serves as a test case for the book’s lessons to be translated to new settings. For example, as president Trump touted hydroxychloroquine as a ‘magic bullet’ early on, this promise felt wrong and uncomfortable. Yet it was difficult to satisfyingly condemn his promise on the basis that he created any false hope. Trump was not a physician but a politician, and his ideas about hydroxy were so premature in understanding COVID that no reasonable person could justifiably believe his proclamations. Hence, their hope could not really be false. Snyder’s book is worthwhile in that it gives readers a vocabulary to tag Trump’s exclamations as wrong without the need to refer to false hope.

The book’s main claim consists of three components: (1) There is something special about hope in the health care setting, (2) Thwarting of such hope creates a distinctive wrong: exploitation, (3) Such exploitation of hope is a problem of respect and a failure to fulfil a specified duty of beneficence. Developed over 8 chapters, these components are not always easy to identify. They disappear against the background of conceptual explorations and extensive case-studies. The claims are wrapped up in the two distinctive parts of the book—theoretical and applied—that are not explicitly separated. Chapters 1–4 lay out the theoretical foundations of Snyder’s claim, where his examples mainly engage with smugglers, immigration and sweatshops; topics with which Snyder is familiar (Snyder, 2010). In chapters 5–8 his claims become more tangible, as Snyder offers compelling examples from the health care setting to illustrate how hope can be exploited. These chapters offer new insights into the phenomena of exploitation, fairness and (false) hope and engage with responsibilities of identifiable people, clarifying Snyder’s claims. The theoretical chapters, preceding these, offer high-level insights on these issues too. Yet their content and claims are easier to appreciate in a second read, when the applied chapters have done their magic.

The book’s title “Exploiting Hope” illustrates Snyder’s high-level starting point. It raises the question: What does it mean, and how does this relate to ‘false hope’, a more familiar term in these settings? Snyder does not explicitly address this question, and it takes most of the book to understand Snyder’s starting point: that there might actually be a problem of respect in particular relations whereby hope is exploited, and that ‘falsity’ of the hope may not be the problem. Had Snyder engaged with the complexity of references to false hope, outlining how such references beg the question if hope could ever be false, (Eijkholt, 2020) his title and contribution would have been more concrete and clear-cut earlier in the book.

Snyder introduces the components of his primary claim in his first chapter, ‘Talking about Exploiting Hope’. As each of these components is rich in itself, their brief introduction makes the chapter dense and abstruse. Aside from engaging with exploitation, hope and false hope, he touches on the various definitions of hope and its potential synonyms and counterparts, such as dreams, hopes, fears and weaknesses. Setting the complexity of the chapter aside, its message is perhaps simple: that there can be exploitation of hope even without misunderstanding of the exploitee or fraudulent intent of the exploiter; two common presuppositions in the context of the case studies and discussions of hope.

Snyder engages with the question ‘What Is Exploitation?’ in chapter 2. He extensively sets out the intricacy in defining exploitation and its classification as morally problematic. Using the well-known example of sweatshop employees, he illustrates how exploitation has been justified as mutually beneficial in situations where these labourers might be relatively well paid and engage in this labour voluntarily. Snyder argues, however, that such exploitation would still be wrong, and uses theories of fairness to explain this. He differentiates between structural and transactional fairness, which proves to be worthwhile for the later chapters on hope in medical settings. This distinction whereby a person would, respectively, take advantage of unjust structural conditions or of unfairness in transactions, offers an explanation for two kinds of vulnerabilities that hope can create. However, without concrete examples of the medical settings to lean on, the value of this distinction for the hope discourse remained initially unclear to me.

The chapter: ‘What Is Hope’ discusses different definitions of hope, including takes from psychology, philosophy and sociology. Snyder explains that hope can sometimes involve a conscious component, but that individuals also make “leaps of hope” which may not be as rational. Hope then can give a reason to live and offer coping mechanisms as a means to control one’s destiny. Indirectly, Snyder thereby illustrates how definitions of hope struggle with rational components and affective (emotional) components of the term (Musschenga, 2019). Snyder chooses to “borrow heavily” from Adrienne Martin’s definition of hope in her book: How We Hope: A Moral Psychology (Martin, 2016) to argue beyond the limited “orthodox contemporary analytic view of hope”. He uses the enriched view of hope to illustrate that hope creates a vulnerability. This focus on vulnerability, instead of on hope’s cognitive and affective components, offers the foundation for Snyder’s claims around exploited hope.

Chapter 4 ‘Exploiting Hope’, brings the theoretical musings together, and offers the basis for one of the book’s claims: that there can be exploitation of hope on a third basis. Next to the basis in transactional or structural unfairness, exploitation may arise as a failure in the duty “to accord others the respect due to them by virtue of their humanity”. Snyder shortens this as: a duty of respect, which he eventually explains as responsibility by (partial) entrustment. In outlining this new basis, the chapter offers the bridge for transition to the case studies of the following chapter.

The case study in Chapter 5 ‘Testing Hope: Exploitation in Clinical Trials’ focuses on the hopes of individuals who participate in clinical trials. Snyder elaborates on phase 1 cancer trials and trials in low to middle income countries (LMIC) to make two points. First, he illustrates that an account of transactional fairness cannot explain potentially perceived wrongs in the creation of hope in these contexts. Indeed, participants in Phase 1 cancer trials are not reimbursed or required to pay for participation. Second, he illustrates that misunderstanding is not just about simple information provision, by illustrating the diverse origins and targets of hope. Accordingly. In the LMICs context, for example, individuals might hope that the trialled drug might become available in their region, but this is unlikely to happen. These hopes are not the result of false information, but most likely due to misunderstanding about the mechanics of drug purchasing, patenting regimes and power structures between richer and poorer countries.

The promise of stem cell interventions and miracle cures for untreatable diseases are spotlighted in chapter 6: ‘Selling Hope’. Snyder offers a snapshot overview of different unproven (expensive) stem cell applications, the promise of their all-encompassing curative powers and their regulatory context. He describes how hope might arise through consumer websites and exaggerated claims on social media. Additionally, he outlines different putative harms of buying into the promise of stem cells, and examines whether these harms define the problem of exploitation. Snyder submits that hope may be instrumental for individuals as a means to feel in control of one’s destiny, but wonders if a patients’ feeling of control and hope would be reasonable to trade off for a tumour, a serious concern with stem cell interventions, or for a significant loss of money. Snyder’s stance implies a negative answer. His application of terms like ‘trust’, ‘fiduciary obligations’, ‘relationships’ and ‘responsibility’ emerge as key features defining the exploitation of hope. These issues exist beyond financial exchanges or structural unfairness, and offer the key to Snyder’s claim about exploitation as a failure of respect, as set out in the next chapter.

In the chapter ‘Legislating Hope’, Snyder focuses on ‘the right to try’ and he finally illustrates how a failure of respect can be at the heart of exploitation. This chapter offers new dimensions to understand the exploitation of (false) hope. I.e. that hope might not be generated only through persons, but also arise out of legislation or a political context. Snyder describes the landscape and historical context of right-to-try initiatives, which were born out of hopes that experimental interventions would be available in much earlier stages of development. As Snyder explains, however, these ‘right to try’ laws do little to improve access to experimental interventions. For example, they do not require developers to actually provide the therapies. Thus, the hope for increased access remains fruitless. Snyder illustrates how ideological ends like personal liberty and freedom have driven legislative efforts. While the hope connected to right-to-try therapies might remain fruitless, this seems irrelevant for legislators and politicians. The fundamental problem is that politicians, in this case, are partially entrusted with the obligation to be transparent and open, yet they do not meet these responsibilities insofar as right-to-try initiatives are broadly fruitless. Accordingly, the primary problems with these laws do not lie in transactional and structural fairness. Such issues may arise, as some parts of right-to-try laws prioritize individuals with an ability to pay (an issue of transactional fairness). Further, they are a risk to the system in undermining institutions that need trust, such as the FDA (an issue of structural fairness). But for Snyder, the main problem with these right-to-try initiatives should be labelled as a problem of ‘respect’. That is, politicians do not honour obligations of transparency and instead exploit hope for political or ideological purposes.

Medical crowdfunding is the last case study in the chapter ‘Networks of Hope’. This chapter shows that the exploitation of hope isn’t just a matter of malicious intent, or only generated by malicious people. Snyder describes how medical crowdfunding creates communities who serve as a conduit for (false) hope. Communities are eager to assist in funding treatments. Online messages about these treatments on medical crowdfunding websites risk perpetuating false claims about the safety and efficacy of interventions and thus feed false hope. Snyder’s extensive and detailed overview narrates how the proliferation of false hope might be accidental rather than planned and might not necessarily be deliberate from those within the community of funders. Even if Snyder describes that the companies behind the crowdfunding initiatives have responsibilities, these companies are only indirectly involved in the exploitation of hope. Instead, Snyder submits that the communities are (unfortunate) networks of exploitation. In generating emotions and perpetuating false information connected to the hope for a cure, the networks and the crowdfunder violate their partial entrustment to make good use of the donor’s funds.

Snyder finishes the book by concluding that there are 3 reasons why the specific respect-based account to exploitation is preferable over any other basis designed to explain the exploitation of hope. He concludes that (1) Fairness-based accounts are either too limited or too wide. (2) Specified respect-based accounts are inclusive of the benefits and advantages of fairness based accounts, and (3) specified respect-based accounts allow for specificity to context lacking in other accounts. His conclusion is representative for the rest of the book: it is original though complex. The chapters each offer an interesting read, though sometimes they give rise to more questions than they answer. The conclusion, for example, is helpful for understanding all the points that Snyder wishes to make. Still, it makes us wonder if this book is really about hope and its exploitation, or if it is really about making an argument for how a respect-based account regarding the exploitation of hope is more helpful than anything else.

In conclusion, the overarching message of the book is worthwhile, but its message is not always easy to distill. Reading through some of its intricacies, the book offers a new way of thinking about medically relevant cases in which hope arises. While this hope may not necessarily be qualified as false hope, the book offers a language to explain distaste for how hope is generated and used. In introducing the phrasing ‘exploiting hope’ the book offers us a terminology to evaluate situations in which desperate people might fare on fruitless hope. Snyder’s book gave me a new way of expressing my discomfort with pursuits of unproven stem cell interventions, and beyond. To return to the beginning of this review, the book allows me to qualify Trump’s explanations without needing to refer to false hope. Instead I can refer to him exploiting the hope of despairing populations for his political gain.

Marleen Eijkholt
Leiden University Medical Center
Leiden, Netherlands

References

Snyder, Jeremy. “Exploitation and sweatshop labor: Perspectives and issues.” Business Ethics Quarterly (2010): 187–213.

Eijkholt, Marleen. “Medicine’s collision with false hope: The False Hope Harms (FHH) argument.” Bioethics 34.7 (2020): 703–711.

Musschenga, Bert. “Is there a problem with false hope?.” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine. Vol. 1. No. 4. US: Oxford University Press, 2019.

Martin, Adrienne. How we hope: A moral psychology. Princeton University Press, 2016.

Book Reviews

Kate Manne, Entitled: How Male Privilege Hurts Women, Crown, 2020

Entitled is in several ways a sequel to Kate Manne’s Down Girl (2018) and provides us with applications and illustrations of the conceptual tools that were introduced in the earlier work. We are provided with a range of concrete instances in which misogyny is an important factor, and in which men’s privilege is prioritized over women’s well-being. The book, as the name suggests, is structured around things that we might or might not consider to be entitlements. Some are presented as things to which women ought to be entitled but are frequently denied as a result of patriarchal oppression (such as adequate medical care); others are presented as things to which men should not be entitled but are often granted (such as domestic labor)—again, as a result of patriarchal oppression.

The first chapter of the book sets the stage and presents us with a paradigm case of an entitled man: Brett Kavanaugh, then potential appointee to the U.S. Supreme Court. Kavanaugh had been credibly accused by Dr. Christine Blasey Ford of a sexual assault that took place thirty-six years prior. Kavanaugh’s case illustrates many of Manne’s key concepts. He was the recipient of what Manne calls “himpathy,” a phenomenon in which privileged men who victimize women often receive more public sympathy or concern than the women they harm (5). He is also an extremely privileged wealthy white man who was often presented as entitled to a Supreme Court position. Many of the entitlements, or lack thereof, around which Manne structures the book are feminine- or masculine-coded goods. Masculine-coded goods, such as the ones to which Kavanaugh was seen as entitled, include things like power and authority, whereas feminine-coded goods include things such as domestic labour and affection (11).

There is some tension, however, between Manne’s presentation— positioning women as being denied things to which they ought to be entitled, and men as being granted things to which they are not entitled—and her explicit inclusion of the gendered oppression that non-binary people also face. In the analysis, non-binary people are often grouped in with girls and women (10, 85), though it’s unclear why this should be the case, given the huge range of gender expressions and identities. Certainly, non-binary people face gendered oppression, but much of it is likely quite different in character than the kinds of gendered oppression that women face. In general, this is reflective of a problem with Manne’s broader attempts to be more intersectional in this work. To be clear, Manne explicitly centres work by women from various marginalized groups—notably Black women like Tressie McMillan Cottom, and trans women like Talia Mae Bettcher. But although she acknowledges that phenomena like transmisogyny and misogynoir are ways in which oppressions are compounded, the book often reads as though it is treating them additively, rather than in a way that is truly intersectional. After all, it is not obvious that trans women’s oppression is connected to people’s demanding feminine-coded goods like love and affection from them, since they are often seen as deceptive or even predatory when providing such affection (Bettcher 2007).

Chapters Two through Four all deal with men’s entitlement to love and sex from women. These extend Manne’s work from Down Girl, and treat some of the same phenomena, like misogynist violence from incels like the Isla Vista killer, Elliot Rodger. Many such people feel themselves to be deprived of something to which they are entitled, and correspondingly see themselves as victimized—and their expressions of victimhood frequently elicit himpathy. Much of this will be familiar from Manne’s earlier work, as well as other feminist activism opposing gendered violence. One helpful addition here is the acknowledgement in Chapter Four that many women have internalized ways in which they “ought” to respond to men’s advances; Manne frames this in terms of women having internalized men’s sexual entitlement (68), though I wonder whether framing this in terms of social scripts might provide a better explanation that captures a wider range of experiences. The idea that men are entitled to feminine-coded goods seems like a likely source of many of these social scripts; but even in Manne’s described scenarios, the idea that the women were prompted to (in)action because they were automatically accommodating men’s entitlement seems like one plausible explanation among others.

Chapters Five and Six switch the framing—whereas previous chapters had addressed men’s entitlements that many women are implicitly treated as responsible for fulfilling, these chapters consider things to which women ought to be entitled but are frequently denied. Chapter Five draws from authors who write explicitly about ways in which women who are marginalized on the basis of racialization or disability are distinctively failed by healthcare systems. Many such cases involve dismissals of women’s testimony about their own physical pain. Manne rejects a testimonial injustice-style explanation for this, arguing that there is more going on than stereotypes about women’s untrustworthiness or incompetence (89- 90). I agree that these systemic failures are not best understood as cases of testimonial injustice. But it is also the case that an analysis on the basis of denied entitlement, through a gendered lens, can also only be partial. The reason why is precisely because of the intersectional analysis in which Manne sometimes hopes to engage by centring the voices of Black women like Cottom and Jazmine Joyner. After all, as Manne acknowledges, the reason why it is important to understand the distinctiveness of misogynoir (87) is because it is not simply racism and misogyny added together. Rather, it is impossible to pull apart the contributions of anti-Blackness and misogyny when we consider how differently Black women are treated than both Black men and non-Black women (Bailey 2016). A similar problem arises in Chapter Six, in which Manne analyzes transmisogyny as described in Bettcher’s work. Manne identifies many important ways in which trans women face discrimination and violence; but social control over trans women’s bodies often takes very different forms than social control over cis women’s bodies, such as attempts to bar trans women from sharing space with cis women. Moreover, in discussing measures of social control over women’s reproductive capacities, the flip side of anti-abortion measures, when we factor in race and disability, are forced sterilizations (Stote 2015; Hall 2017, 103–5).

So, while in general I agree with Manne that misogyny certainly contributes to various measures of social control and medical discrimination, I think there is a potential issue with grouping together these sometimes very different phenomena under the same heading. Given that the book is intended to be a consideration of how men’s privilege is damaging to women, it risks treating anti-Blackness, transphobia, ableism, and other kinds of oppressions as simply factors that make misogyny worse, instead of understanding them as interactive. For instance, transphobic discrimination is able to disguise itself as feminist in ways that other kinds of misogyny cannot (Lewis 2019). And stories like Cottom and Joyner’s are not just stories of misogyny exacerbated by racism. They are stories of how people who share in more than one marginalized identity face discrimination that is not reducible to any single factor. While Manne is not claiming that misogyny is the only factor at play, telling these stories as clear instances of misogyny allows us to downplay the extent to which (for instance) white cis non-disabled women participate in white supremacy, ableism, and transphobia. For example, Joyce Eshaquan, an Indigenous woman who died after being admitted to a hospital in Joliette, Quebec, documented her racist treatment by (it seems) female hospital staff (Shingler 2020). She died because she was an Indigenous woman in a society shaped by colonialism, racism, and misogyny, and these are inextricable when we consider the circumstances of her mistreatment and death (“Reclaiming Power and Place” 2019). Manne’s book acknowledges that women who are not white or cis face misogyny that is distinctively shaped by their Black or trans identities. But an analysis that has men’s entitlement at its core hampers the extent to which we can recognize the ways in which white supremacy and transphobia (things that also oppress many men) contribute to the situations described.

Chapter Seven is a much clearer case of the kind of phenomenon Manne wants to explain, in which inequality with respect to domestic labour remains an ongoing problem; and Chapter Eight seems to be a specific instance of a more general phenomenon of epistemic domination. To that end, Manne introduces the helpful concept of “epistemic entitlement” in which a person with more social privilege assumes a greater authority to speak and shape the common narrative (140). But the flip side of this is the extent to which many people, often women, from other marginalized groups, are expected to produce their own “authentic” group knowledge upon request (Narayan 1997, chap. 4; Tuck and Yang 2014). The final substantive chapter revisits several elements of Down Girl, in which Manne outlines ways in which women who aspire to or hold positions of power are held to unreasonable standards, and are invalidated and criticized in ways that their male counterparts are not.

Entitled ends on a hopeful note, however, in which Manne considers the entitlements that she wishes for her own daughter, and the ways in which she hopes her daughter will be able to resist the misogynist entitlements of others. My final concern with this overall project, though, is the direction in which it might point us in seeking a more just world, in which we abolish the policing of misogyny. My worry, as someone who takes an anti-carceral stance to justice, is that a focus on excessive sympathy for undeserving men can easily end up scapegoating and imprisoning the kinds of men who are already overrepresented in our prison systems. Nominal protection for (white) women has long been used to prop up state-sanctioned racist and colonial violence (Alcoff 2018, 229–30). Manne explicitly disavows a carceral stance (49), and even goes so far as to express some sympathies with prison abolition (214n), but these commitments do not line up neatly with the tools that this book provides. What this book gives us is important, but as with any single person’s contribution, it is limited.

Entitled does a very good job at showcasing the ways in which relatively privileged men typically have their needs and wants met by society; and, when those are not met, they frequently receive more sympathy than others with less social privilege would in their situation. What we are left with is a situation in which it is clear that some people are receiving more care—himpathy, after all, is an excess of sympathy. And if this is an excess, then the obvious solution is that we would be better off according less sympathy to the Brett Kavanaughs of this world. In these obvious cases, this solution seems fair. But many situations are much less obvious, and many men who are most in danger of incarceration are not, by and large, having their needs met by society in the first place. Those men are not Manne’s intended targets, but by looking at discrimination primarily through a gendered lens, and by considering men’s gendered entitlements writ large, I think that the men for whom sympathy most risks being withdrawn are the ones for whom there was no excess in the first place. To be clear, I do not consider this a conceptual problem with Manne’s account, but a tactical one. I don’t think that Manne’s analysis is trying to tell us, or even directly implies that what we ought to do, is put more Black, Indigenous, disabled, or otherwise marginalized men in prisons. But if resisting men’s entitlement is a central component of reducing the harms of misogyny, then much more nuance around issues like race, class, and disability would be required to prevent this from becoming a further excuse to incarcerate more marginalized men.

Audrey Yap
University of Victoria

Victoria, B.C.

References

Alcoff, Linda Martín. 2018. Rape and Resistance. Cambridge, UK: Polity Press.

Bailey, Moya. 2016. “Misogynoir in Medical Media: On Caster Semenya and R. Kelly.” Catalyst : Feminism, Theory, Technoscience 2 (2). http://dx.doi.org. ezproxy.library.uvic.ca/10.28968/cftt.v2i2.28800.

Bettcher, Talia Mae. 2007. “Evil Deceivers and Make-Believers: On Transphobic Violence and the Politics of Illusion.” Hypatia 22 (3): 43–65.

Hall, Melinda C. 2017. The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics. Lanham, MD: Lexington Books.

Lewis, Sophie. 2019. “How British Feminism Became Anti-Trans.” The New York Times, February 7, 2019, sec. Opinion. https://www.nytimes.com/2019/02/07/ opinion/terf-trans-women-britain.html.

Narayan, Uma. 1997. Dislocating Cultures: Identities, Traditions, and Third World Feminism. New York: Routledge.

“Reclaiming Power and Place: The Final Report of the National Inquiry into Missing and Murdered Indigenous Women and Girls.” 2019. https://www. mmiwg-ffada.ca/final-report/.

Shingler, Benjamin. 2020. “Investigations Launched after Atikamekw Woman Records Quebec Hospital Staff Uttering Slurs before Her Death.” CBC News. September 29, 2020. https://www.cbc.ca/news/canada/montreal/quebecatikamekw-joliette-1.5743449.

Stote, Karen. 2015. An Act of Genocide: Colonialism and the Sterilization of Aboriginal Women. Fernwood Publishing.

Tuck, Eve, and K. Wayne Yang. 2014. “Unbecoming Claims: Pedagogies of Refusal in Qualitative Research.” Qualitative Inquiry 20 (6): 811–818.

Book Reviews

Imani Perry, Vexy Thing: On Gender and Liberation, Duke University Press, 2018.

Revolution begins with the self, in the self…It may be lonely. Certainly painful. It’ll take time. We’ve got time. That of course is an unpopular utterance these days. Instant coffee is the hallmark of current rhetoric. But we do have time. We’d better take time to fashion revolutionary selves, revolutionary lives, revolutionary relationships. Mouth don’t win the war. It don’t even win the people. Neither does haste, urgency, and stretch-out-now insistence. Not all speed is movement. – Toni Cade Bambara, The Black Woman (1970)

Writing in the midst of the disparate impact of the COVID-19 pandemic and the militarized white supremacist violence leveraged against protestors rebelling in defense and affirmation of Black life, I struggle to find a place to begin this review. And when I struggle with pulling together many interwoven threads and need guidance, I always turn to Black feminists of past and present. I do this is in part because Black feminism is my grounding praxis, but also because Black feminists are incredibly generous and timeless in offering gifts of mappings, frameworks, schematics, and analyses to navigate and understand complex, interwoven events and systems. Black feminist offerings include Audre Lorde’s (1984) ‘chaos of knowledge,’ Kimberle Crenshaw’s (1991) ‘intersectionality,’ Monique Morris’ (2016) “pushout,” Patricia Hill Collins’ (2009) “matrixes of domination,” bell hooks’ (2000) “oppositional worldview,” and Beth Richie’s (2012) “male violence matrix” to name just a few. In “On the Issue of Roles,” Toni Cade Bambara interrogates patriarchal notions of “the Black Woman’s Role in the Revolution” (p. 123)[1]. She offers a nuanced, historical mapping of the constructed binary of “masculine” and “feminine” roles as rooted in misogynistic and capitalistic traditions of domination. And as the above excerpt highlights, Bambara offers guidance for a way forward by beginning with one’s self and one’s relationships. In this Black feminist spirit, I am struck by the many offerings enclosed in Imani Perry’s Vexy Thing: On Gender and Liberation (2018).

            Perry continues in the Black feminist tradition by offering ‘liberation feminist praxis’ as guidance on how to take time to critically read the machinations of patriarchy interwoven in conceptions of personhood, property, empire, modernity, neoliberalism, digital media and technology, and the security state. She offers liberation feminist praxis as a way of curating relationships to others, our imaginations of a liberated future, liberatory social organization, and affective witnessing practices. Vexy Thing is an invitation and demonstration of a critical feminist reading of “multiple forms of domination that grew under a structure of patriarchal authority that was globally imposed during the age of empire” (p. 6). I see Vexy Thing as an important call to take time, as Bambara says, to develop an analysis of patriarchy that makes clear the insidious character of gender domination and exploitation as complex and layered. As Perry describes, the book is “a theoretical argument advocating the primacy of praxis rather than [taking a pro or con] position” (p. 9).

            The book is divided into three sections with two interludes. The first chapter, “Seafaring, Sovereignty, and the Self: Of Patriarchy and the Conditions of Modernity,” and the second chapter, “Producing Personhood: The Rise of Capitalism and the Western Subject,” make up the first section. In this first section, Perry homes in on patriarchy as an undergirding logic of modernity, globalization, and neoliberalism by analyzing the relationships between the legal formations of personhood, sovereignty, and property. She begins with a significant engagement with John Locke in chapter one, writing: “So I begin with the proposition that the economic liberalism of which Locke was a foundational thinker — and, specifically, the doctrine of personhood — entails a system whereby the subject before the state or the law was made into either patriarch, his liege (woman), or someone outside legal recognition, whether slaves or what in that time were termed “savages” but whom we can also term “nonpersons” in the judicial sense” (p. 21). Drawing on Hortense Spillers, Perry highlights the integral role of gender domination in philosophical and political formations of legal recognition in the works of thinkers like Adam Smith and Thomas Hobbes and in policy like the Relief of the Poor Act of 1782 and the Poor Law Amendment of 1834 (p. 40). The second chapter continues this line of inquiry into the nineteenth century to explore the structure of patriarchy and personhood during the rise of industrial capitalism and colonialism. This chapter interrogates the “modern, postfeudal global patriarchal order” through analysis of Mary Wollstonecraft Shelley’s Frankenstein (1869), the “Father of Gynecology,” Dred Scott v. Sandford (1857), and French colonial policy through Oscar Wilde’s “fantasy of domination” (p. 79).

            “How Did We Get Here? Nobody’s Supposed to Be Here” serves as a bridge between section one and two. This first interlude reckons with the impact and interconnectedness of post-World War II gender discourses and geopolitics. Perry begins with an analysis of the success of the film Norma Rae (1979) as in tension with the film’s real-life inspiration, Crystal Lee Sutton, who lived an economically vulnerable life. This helpfully sets the stage for her call to feminists to critically assess how the “language of liberalism…and the liberal democratic project” limits feminist articulations of gender domination and struggle (p. 93). Perry pointedly highlights the liberal politics of inclusion as a call “for an expansion of who can be patriarchs and ladies,” which foreshadows chapter three. The second section of the book, “In the Ether: Neoliberalism and Entrepreneurial Woman”, starts with an exploration of the rise of the “entrepreneurial woman” as a neoliberal, postfeminist companion to the “entrepreneurial man.” This chapter draws heavily on Wendy Brown’s (2009; 2003; 2015) analysis of neoliberalism to suggest that the modern structure of patriarchy has expanded who can compete as a patriarch or lady to the patriarch in the neoliberal marketplace. She offers musings on the “marketization of identity” (p. 108), representation politics in “a bureaucratized feminist (and civil rights) movement” (p. 111), and “conventional hetero-patriarchal concepts of desire” (p. 113).

            Next, in “Simulacra Child: Hypermedia and the Mediated Subject,” Perry utilizes Jean Baudrillard’s (1994) reading of spectacles and simulacra to understand self-representation, human connection, profitable personal data, the rise in sexually explicit material on the Internet, and truncated (and often decontextualized) history. In chapter four, Perry suggests that:

            Consumption and performance in the simulacra are primary modes of engagement with, and contestation of, gender and racial representation, particularly as democracy succumbs to neoliberal priorities. It is a stage for popular dissent, and yet it is also dependent on corporations and disciplined by oligarchic control of market flows, as is evident during moments in which corporations choose to silence certain forms of critique (e.g., Twitter suspension in the midst of the 2016 campaign of the @GuerrillaDems account that created the #WhichHillary hashtag to criticize Clinton’s waffling on liberal and progressive issues) (p. 131-132).

            This chapter highlights the importance of a critical feminist reading of the many layers of domination imbued in the digital arena. The chapter includes a robust discussion of explicit versus pornographic images on the Internet, reality television as performative spectacle, and Kara Walker’s installation The Marvelous Sugar Baby (2014). And the fifth chapter, “Sticks Broken at the River: The Security State and the Violence of Manhood,” closes the second section of Vexy Thing. In this chapter, Perry reads patriarchy through the life of Jeffrey Fort and the United States’ National Security Act (1947). She contends that the logic of the security state hinges on patriarchy to define and exert sovereign authority as a relationship of control and deprivation. This is evidenced by the continued rise in domestic, border, and global U.S. militarization and expansion of the reach of carcerality (including prisons and detention centers with school service providers who do ancillary police work). Additionally, Perry considers the appeal and harm of men, whom she calls “patriarchy seekers,” who are denied the recognition of legal personhood and aspire to have the power and dominance of patriarchs. This is done, in part, to say that aspirational patriarchy supports the continuation of patriarchy, even if the distribution of harm differs from more powerful patriarchs, like the state and state officials.

            The second interlude, “Returning to the Witches,” introduces the final section of the book – and my favorite section. Perry uses Alice Walker’s “In Search of Our Mothers’ Gardens” to frame the turn in the book from “reading through layers” to, what Walker names, ‘witch-artist’ traditions of rearranging and witnessing in the throes of injustice. Asking readers to go beyond calls to elevate women to the position of patriarchs or other integrationist feminist calls, Perry explains:

In this book, [witch-artists] carry us across the bridge from the first two sections, which offer descriptive readings of conditions and structures that create, sustain, and extend patriarchy, to the final section, which moves through an imaginative landscape in which we might ignite the capacity to make our way out from under the force of patriarchy on our minds and wills (p. 172).

            The final section of the book begins with chapter six, “Unmaking the Territory and Remapping the Landscape.” This chapter positions mapping as both “a tool of the sovereign authority, and its agents, in the form of men-cum-patriarchs” and a way of feminist witnessing from the margins (p. 179). Perry explores the former through Martin Waldseemuller’s world map of 1507 and analysis of what she calls “neocolonial cartographies of human value” (p. 180). And she highlights the latter through examinations of mappings of Black women and disability in novelist and elder, Toni Morrison’s Song of Solomon (1977) and works by painters, like Wangechi Mutu and Julie Mehretu.

            The final two chapters of the book are “The Utterance of My Name: Invitation and Disorder of Desire,” chapter seven, and “The Vicar of Liberation,” chapter eight. In chapter seven, Perry draws on Stanley Cavell’s (2006) conceptualization of the passionate utterance and Audre Lorde’s (1984) conceptualization of the erotic to affirm the importance of affect for liberation feminism. She clarifies her work in chapter seven in the following:

            More explicitly, I am concerned not simply with the things we “love” or relations we desire, but explicitly with the act of gesturing toward the possible that does not fit into logics of liberalism vis-a-vis a personhood status that comes with forms of ready-made social and legal recognition. I am interested in how considering passionate utterances might lead us toward the development of a practice of resourcefulness and creative praxis vis-a-vis being (collectively) that lies in contradistinction to the terms of market logic and both the neoliberal and liberal subject (p. 207).

            Hence, Perry is seeking to call readers to break with exclusionary logics of liberalism to imagine creative, liberation practices. This is further explained in the eighth chapter, where Perry looks to the practice of curation to suggest that liberation feminist praxis requires deliberate curational practices to be in relation to others and one’s self. She examines curation in conversation with Toni Morrison, Alabama’s Gee Bend Quiltmakers, Toyin Ojih Odutola, El Anatsui, and Wendy Chun. Throughout the final chapter, Perry is proposing liberation feminism as a “living curational project” to cultivate listening politics and analytics (p. 245).

            As feminists and others continue to grapple with analyzing and building toward liberatory futures during the vexing times of 2020, Vexy Thing is a helpful interdisciplinary offering to read for the ways the moves of patriarchy show up in legal and political formations of personhood, the neoliberal marketplace, the digital world, and in one’s practices and relationships. Vexy Thing is filled with numerous, interesting threads ripe for conversation for any reader. For instance, I am interested in thinking through the conceptual links drawn in Perry’s analysis of the entrepreneurial woman, personhood, gendered labor, and neoliberal capitalism. In particular, it is challenging to parse through the varying conceptions of entrepreneurial woman as a “market victor” and entrepreneurial woman as a “legal nonperson.” Using Perry’s terminology, what is the relationship between legal nonpersonhood, partial personhood, full personhood and one’s available options (or lack thereof) in the neoliberal marketplace as an entrepreneur? Are all people with differing legal recognition of personhood entrepreneurs? Perry seems to suggest this when she says, “in the United States, people who, under conditions of danger and secrecy, travel across borders to do the work of entrepreneurship into which we are all forced and fill jobs in the neoliberal economy are often perceived as competitive threats in low wage markets rather than as vulnerable” (p. 121). And how does the framework of personhood help one identify the harm and relative power of the entrepreneurial woman in the example given of the market for artificial hair and knockoff designer bags? Last, given that the neoliberal marketplace relies on gendered labor exclusion and precarity, how do we distinguish the ways that exclusion and precarity create the conditions in which people are entrepreneurial in informal economies as a means of survival, rather than as a means to approach the status of a patriarch or liege of the patriarch? These are all simply fascinating questions to ponder, so I am grateful that Perry’s work inspires such thought-provoking questions.

            Ultimately, Perry says the book “calls for us to treat “feminism” as a verb: to feel the resonances, answer the utterances, listen closely, and experience that as a doing, as a diachronic poesis of living in politics that is ever changing, uncertain, and vexed but that also, we hope, will bring us closer to freeing us all” (p. 253). And certainly, it is crucial to take time to treat feminism as a verb to fashion revolutionary selves, revolutionary lives, and revolutionary relationships that indeed bring us all closer to freedom.  

Ayanna De’Vante Spencer

Michigan State University

East Lansing, MI

References

Bambara, T. C. (1970). The Black woman: An anthology. New York: Penguin.

Collins. P. H. (2009). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. New York: Routledge.

Crenshaw, K. W. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review 43 (6): 1241-1299.

hooks, b. (1984). Feminist theory from margin to center. Boston: South End Press.

Lorde, A. (1984). Sister outsider: Essays and speeches. Trumansburg: Crossing Press.

Morris, M. W. (2016). Pushout: The criminalization of Black girls in schools. New York: The New Press.

Richie, B. (2012). Arrested justice: Black women, violence, and America’s prison nation. New York: New York University Press.


[1] I came to identify and hone my politics as Black feminist politics, in large part, because of my incredible community in the Toni Cade Bambara Scholars/Writers/Activists Collective at the Spelman College Women’s Research and Resource Center. Facilitated by Dr. M. Bahati Kuumba, Black feminist students met every Friday over pizza to read, discuss, and strategize together. This is my beginning. I am forever grateful to Bahati, Christine Slaughter, Hadiya Jones, Amoni Thompson, Banah Ghaban, AriDy Nox, Tanisha Jarvis, Ain Ealey, Madyson Crawford, Teri Davis, Veronikka Gittens, and many other sister-scholars.

Special Issue, Uncategorized

Surging Solidarity: Reorienting Ethics for Pandemics

Jordan Pascoe & Mitch Stripling

[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]

ABSTRACT. Public discourse about ethics in the COVID-19 pandemic has tended to focus on scarcity of resources and the protection of civil liberties. We show how these preoccupations reflect an established disaster imaginary that orients the ethics of response. In this paper, we argue that pandemic ethics should instead be oriented through a relational account of persons as vulnerable vectors embedded in existing networks of care. We argue for the creation of a new disaster imaginary to shape our own understandings of the interrelated social, political, and economic hardships under conditions of social distancing. We develop a pandemic ethics framework rooted in uBuntu and care ethics that makes visible the underlying multidimensional structural inequities of the pandemic, attending to the problems of resource scarcity and inequities in mortality while insisting on a response that surges existing and emergent forms of solidarity.

1. A Public Health Disaster

When the disease struck, the new administration determined they must be effective. Efficient. Do the most good for the greatest number. They built armies of contact tracers, who knocked on doors to collect symptoms. Neighborhoods with cases were asked to self-quarantine; a few neighborhoods were cordoned off to keep the ill from infecting others. But the disease continued to spread, especially in urban areas inhabited by people of color, where generations lived together in tight quarters. To better prevent spread, the city moved these residents a few miles away to isolation camps at full government expense. This fast, forceful action drove case rates sharply down, saving many lives (Phillips 2012). The newspapers were supportive—how well prepared the city was! How fair! It saved lives not just of the wealthy, but the poor of all races, too!

The year was 1904; the disease, plague. The isolation camp was named Klipspruit, later Pimville. Still later, Soweto. The city was named Johannesburg, and, two years later, still wrestling with plague, it would force all Africans into this isolation camp. The population’s fear of sickness allowed the white power structure to take action that would never have been allowed. Not at first, perhaps, because at first there was sympathy, since most victims were the domestic workers of white families. But the racialized fear that the city would descend into chaos proved stronger than the sympathy over time. As a nearby historian remarked, the plague allowed the town council to achieve what a few had desired “for the past forty years: to force many African residents in the inner locations out of town” (Phillips 2012). Thus, apartheid in South Africa sprang from the seeds of a public health order designed to do the most good for the greatest number and keep a racialized Hobbesian state of nature at bay.

Systems that, in better times, prioritize more egalitarian ethical approaches, often turn to utilitarianism in disasters. This turn tracks our moral intuitions that in times of great scarcity and competition, sacrifices will be necessary, and because they will be necessary, they will be acceptable. These choices are well-intentioned but infected by underlying biases and an “elite panic” (Drabek 2016) that disasters will cause society to descend into a state of nature: the history of disasters teaches that these events overwhelmingly exacerbate underlying inequities and that governmental responses tend to reinforce those inequities, not improve them (Tierney 2014).

As COVID-19 threatened to overwhelm Italy’s healthcare system, fear of scarcity took hold. A clinical association issued guidelines for how to allocate increasingly scarce medical resources. They told doctors to prioritize those “with a greater likelihood of survival, and second, who have more years of life left” for ventilators (Mounk 2020), “in order to maximize the benefits for the largest number of people” (Vergano et al. 2020). Doctors involved in developing the guidelines called them “soft utilitarian” principles and justified the choice as consistent with wartime triage and medical ethics in a catastrophe (Rosenbaum 2020; Ives 2020). 

Certainly, these guidelines were lifelines to tearful clinicians faced with two dying patients and one ventilator.But these cases were rare. In an interview with the Journal of the American Medical Association, Dr. Maurizio Cecconi denied that this kind of triage was happening in northern Italy, arguing instead that the region had created many hundreds of new beds in a few short weeks that were shared by hospitals across Lombardy. In fact, hospitals in northern Italy joined together in an ICU network to share resources. They committed jointly to giving an intensive care bed and ventilator, to anyone who needed it. The Italian government sent additional resources to fulfill this promise. Doctors improvised, finding new pathways of care that both used fewer ventilators and were more effective (AMA Ed Hub 2020; Grasselli, Pesenti, and Cecconi 2020; Begley 2020).

But this wasn’t the story that captured the world’s attention: “Italians over 80 ‘left to die’” read a Telegraph headline (di Blasi 2020). In the US articles about how utilitarian guidelines should be applied in ventilator shortages proliferated (Wikler 2020). In hospitals, these resource allocation guidelines are just one element of what is known as Crisis Standards of Care planning, which is itself only entertained once a healthcare system has reached the limits of its ability to surge care (Hick et al. 2020) But in the public imagination they loomed large, as hospital guidelines justifying limited care for those over 80 became public calls to sacrifice the elderly to keep unemployment numbers down. The lieutenant governor of Texas, Dan Patrick, argued that older people like himself should volunteer to die to save the economy (Levin 2020). Meanwhile, a utilitarian emphasis on “acceptable sacrifice” seemed to lead President Trump to suggest that sacrificing human life was warranted in order to keep the economy functioning (Haberman and Sanger 2020).Our existing moral frameworks for disaster and response shaped a set of moral dilemmas that pitted us against each other. In doing so, they undermined our perception of a wider set of moral hardships emerging as the pandemic unfolded.

In this paper, we argue that we need a more diverse set of moral frameworks to guide public health and economic policy in a pandemic and to shape our own understandings of the interrelated social, political, and economic hardships under conditions of radical social distancing. As we write, the moral dilemmas of COVID-19 are still unfolding around us. We focus, therefore, on how the collective narratives that shape our experience of this disaster inform what kinds of moral problems we see. These narratives, we argue, are disaster imaginaries, which orient our identification of moral dilemmas, shape the premises and priorities of planning and response, and ground moral motivation in disasters. They may harness or hamper the perceptual shifts that disasters produce, and they may warp or enrich the moral frameworks that guide response.

We understand this global pandemic as a peculiar kind of public health disaster in which persons are characterized by their vulnerability to and their status as vectors of contagion. As vulnerable vectors, persons are embedded in multidimensional networks of caregiving that produce new dimensions of vulnerability over time. To understand this context, we need new disaster imaginaries that understand human beings as interconnected in an unfolding public health and economic crisis, where our hardships are often the result not of scarcity, but of undermining or overburdening existing networks of care.

The basic structure of the argument is as follows. In §2, we unpack our existing disaster imaginary and ethical frameworks, arguing that utilitarian-driven disaster ethics, though helpful for distinct problems of resource scarcity, ultimately conceive of emergencies in terms of competition, deploying a “second state of nature” narrative that both racializes response and fails to capture the emergent nature of a pandemic. In §3, we argue that this ethics is ultimately not grounded in the sociology of public health disasters, and we draw on recent developments in feminist bioethics to reconceptualize autonomy through our relational account of vulnerable vectors. We then develop a new disaster imaginary in §4, drawing on the ethics of uBuntu to show how attentiveness to our interconnected vulnerability can help us reconceptualize the moral dilemmas and hardships of the pandemic through solidarity. With this moral orientation in place, in §5, we examine the problems of interdependency, vulnerability, and risk that arise in a pandemic where everyone is, in effect, both a vector and a caregiver, and reframe the moral labor of response using a care ethics framework. Finally, in §6 we argue that the totality of these ideas makes possible a pandemic response that surges and sustains existing and emergent forms of solidarity which would otherwise collapse. We conclude by exploring how the moral challenges of vulnerable vectors are not unique to pandemics, but instead we argue that disaster ethics more broadly should reorient its understanding of how disasters unfold in time, producing new dimensions of vulnerability along existing axes of marginalization.

2. Disaster Ethics and Imaginaries

At Memorial Hospital in New Orleans in the days after Hurricane Katrina, doctors euthanized as many as two dozen patients in the face of an uncertain evacuation and a lack of resources (Fink 2009). Hospital staff directed an ad hoc effort to triage patients; having decided which patients had the greatest likelihood of survival, they determined that euthanizing those least likely to survive would increase the chances of the greater number—a utilitarian moral principle similar to those used by doctors to prioritize ventilator allocation in COVID-19. Frightened of what waited outside the hospital, they looked at a lobby full of very sick patients and saw a trolley problem.

But this was still New Orleans, after all. There were Coast Guard crews and radiocommunication. Evacuation was happening consistently. Why did the staff at Memorial fail to look beyond their own walls? As in the Italian example, why do so many people in disasters imagine they are trapped within a trolley problem when, by connecting or sharing, they could escape from it? To understand why, we have to unpack the ethical frameworks of utilitarianism and autonomy that structure much disaster decision making, including during pandemics, and the “state of nature” disaster imaginary that grounds them. 

At Memorial, doctors’ prioritization of care was the inverse of what happens in “normal” times, when emergency room triage takes the most severe cases first, sometimes leaving those with minor ailments waiting for hours as they work to save all those who can be saved. Is this inversion justified? In Ethics for Disaster, Naomi Zack argues that disaster ethics should remain committed to the moral principles of ordinary times. She warns against a shift from the rule-utilitarian commitment to saving all who can be saved (SALL) towards the more limited saving the greatest number (SGN), noting that this shift often rests on a faulty fixation on scarcity and stress. Instead, we have a moral duty before disasters to prepare for them in ways that will limit these hard choices.

The choices doctors faced at Memorial were the result of failures at every level of management, from within the hospital, from its management and parent companies, and from local, state, and federal officials (Fink 2009). Clearly, failures of preparedness can produce impossible moral choices (Tessman 2017, 3). Yet Memorial was not significantly less prepared than other hospitals in New Orleans. The decisions made there show that the ethical tools we have to shape our formulation of these moral choices, in moments of crisis, matter. In this case, we see the limitations of utilitarianism as a guiding framework when resource scarcity is assumed. The urgency that drove the decision to euthanize patients was first, a failure of moral imagination: an expectation that in disasters, scarcity makes moral failure inevitable. Second, it was a flawed moral framework: once failure is inevitable, utilitarian frameworks move the question to which failures are most acceptable, a question ripe for bias. 

These failures are rooted in a deeper moral narrative that shapes our understanding not just of disasters, but of human communities in rupture. Naomi Zack argues that in the popular imagination—and often, in government policy—disasters trigger a kind of “second state of nature,” a condition in which our institutions and protections dissolve or are flooded into ineffectiveness, in which we find ourselves in some kind of Hobbesian war of every person against every person (Zack 2009, 74–79). The second state of nature story operates in disaster as what Bruce Jennings and Angus Dawson have called a “shaping sensibility—a vantage point that informs other normative principles and ideals rather than supplementing or competing with them” (2015a, 32). When our disaster imaginary leads us to expect a Hobbesian state of scarcity and competition, our orientation towards our ordinary moral commitments shifts based on that perceived threat.

The state of nature disaster imaginary, with its accompanying utilitarian emphasis on scarcity, competition, and anxieties over the suspension of “ordinary” rules has informed the priorities of pandemic planning for the COVID-19 pandemic. The CDC’s Ethical Guidelines for Pandemic Planning, for example, reflect this concern with scarcity and resource allocation, in the form of ventilators and vaccines (2015). These guidelines, however, reject pure utilitarianism as morally inadequate and offer three correctives meant to prevent a pandemic response of “saving all who can be saved” from harming the few in its quest to protect the many. These correctives, briefly, are that any response must refrain from harm, provide equal opportunity to resources within defined priority groups and, crucially, respect autonomy. Much of the guidance focuses on justifying the limited circumstances under which autonomy may be restricted in the interests of public health (Kinlaw and Levine 2007, 6–7). 

This emphasis on autonomy and individual rights reflects the degree to which the state of nature disaster imaginary is also a narrative that frames response as a kind of social contract, restricting the state’s authority to infringe rights and liberties (Kessler 2020; Zack 2009, 76–77). But as we will argue, conditions of contagion undermine “normal” conceptions of individual autonomy, making it impossible to distinguish when one is choosing for oneself or unwittingly choosing for others and, thereby, creating risk for them (Francis et al. 2005, 321). In this way, Leslie Francis and Margaret Battin argue that the threat posed by infectious disease may be analogous to the threat posed by concealed weapons: both concern our rights to pose unseen threats to one another in public spaces (Francis et al. 2005, 316). In the US, where gun rights differ from state to state, our “ordinary” conceptions of the risks we are entitled to pose to one another also vary. Thus, while public acceptance of social distancing and lockdown protocols have broken down along existing political and economic divides (Cunningham 2020; Brewster 2020), they have also tracked attitudes about gun rights and our right to pose threats to one another without government restriction. And, as Charlie Warzel argued in The New York Times, our failure to respond to the epidemic of gun violence sets a troubling precedent for our willingness to accept preventable death on a mass scale rather than accept collective responsibility and restrict civil liberties accordingly (2020). 

Our disaster imaginaries, then, shape both what we identify as moral dilemmas in disaster and the moral premises and priorities of response (Solnit 2010, 90–93). As Charles Mills has argued, the state of nature narrative itself, which emerges through Europe’s colonization of the New World, races both bodies and spaces, constructing non-white bodies and non-white spaces as embodiments of the state of nature, the medium through which the threat of the state of nature looms even in civilized society (1997). The image of Black neighborhoods and Black bodies as always already potential states of nature does a great deal of symbolic work in disaster narratives, where predominantly Black areas are assumed to “inevitably” slide into chaos, while the rights of white people, and white property owners in particular, must be protected (Mills 1997, 87; Solnit 2010, 248–54). At Memorial, fear of the “crazy Black people” outside in the streets is part of what drove doctors to euthanize patients, rather than waiting for aid (Fink 2009). 

This racialized disaster imaginary has shaped the impact of the COVID-19 pandemic; in New York City, enforcement of social distancing was heavily racialized, with only 7% of those arrested being white, even as people of color are disproportionately contracting and dying of the virus (Southall 2020). Racialized law enforcement and health care inequities are not emergent effects of the pandemic: they are well-entrenched patterns of inequality and vulnerability produced by our “ordinary” moral commitments in “normal” times, weaponized by the policies and pressures produced by the pandemic. 

This racialization of disaster narratives and response reflect the ways that the pre-disaster moral order is already deeply flawed, often feeding a disaster imaginary oblivious to the assumptions of utilitarianism, autonomy, and social contract theory. Zack and others argue that greater preparation before can ease the dilemmas we find within them. Zack bases our moral duty on the framing “Save All Who Can Be Saved, With the Best Preparation.” In current Crisis Standards of Care guidance for COVID-19, this is expressed as a “Duty to Plan,” a framework which charges healthcare systems and society, generally, with an ethical obligation to think proactively before the full impact of a pandemic or other hazard is upon them. 

It is not that we think this is wrong or unhelpful. Certainly, not thinking about these issues before a crisis can lead to “wasted resources, inadvertent loss of life, loss of trust, and triage/rationing decisions being made unnecessarily” (Hick et al. 2020). However, disaster ethics cannot rely on “preparedness” to fully address these inequalities precisely because preparedness frameworks remain committed to “ordinary” moral commitments and established disaster imaginaries. In Ebola and Learning Lessons from Moral Failures: Who Cares about Ethics?, Smith and Upshur (2015) chronicle dozens of failures from the 2014 global Ebola response, critiquing the health preparedness frame as “myopic” (7) when dealing with complex issues such as health systems fragility. These problems, they argue, are deep moral failures created by lapses in global values, which can only be addressed by new systems. Similarly, Sheri Fink argues that Memorial’s staff failed, in part, because of a “lack of situational awareness” (Fink 2013, 338) driven by biased or false narratives of events. Healing perception is not an act of preparation—it requires new ways to understand the moral challenges of disaster.

3. Vulnerable Vectors: Rethinking Pandemics

Pandemic planning has largely emphasized that “ordinary” moral principles can be adapted to emergent contexts and relied on to mitigate harms. We’ve seen how this can be problematic; it also assumes that a disaster is fundamentally a rational expansion of an everyday crisis or moral choice. Larger in scale, perhaps, but fundamentally the same as a car accident, say, or a fire (Zack 2009, 4–7). Disaster literature, however, teaches us that at the scale of a public health disaster (such as a pandemic), these events are much different, in three relevant ways: They alter perception, require imagination, and enhance community.

First, disasters alter perception. Saundra Schnieder (2014) argues that disasters break old societal norms and immediately create new ones to help adaptation. Second, catastrophic response requires imagination, as E. L. Quarantelli, the father of disaster sociology, makes clear (2005). Paradoxically, if a situation doesn’t break day-to-day systems and procedures, it is not a disaster, meaning that any disaster response will have to be partially improvised. Full preparedness is therefore not only ethically problematic but not possible. Since we can’t properly perceive disasters beforehand and must respond to them with imagination, the appropriate decisions can’t be made beforehand. The key question is the following: what moral grounding can we provide to that imagination to keep us away from problems of scarcity?

A partial answer lies in the third feature of disasters: They enhance community—unless people are redirected toward apathy by the response itself. Rebecca Solnit argues:

In the aftermath of 9/11, people had not a good time, but a deep, profound, rousing time, woke up from their ennui and isolation and trivialization to feel engaged, connected, purposeful, ready to give, to engage, to care, to learn. There was a tremendous opening in which the country could have gone in other directions, an opening in which people wanted to understand Islam and foreign policy, wanted to sacrifice and engage. I saw the Bush Administration wrestling these forces back into insignificance and urging people to fear, to shop, and to withdraw instead. (Vishwanathan 2017)


By rapidly shifting our imaginative horizons in a context in which we are deeply dependent on one another for survival, disasters tend to open up new moral possibilities and to drive communal innovation. In short, the history of disasters tells us that, for the most part, people are not worse moral actors during a disaster; they are better (Drabek 2016). Instead of looting and arming themselves, most people in disasters work together in existing and emergent communities to share resources and care for one another. In natural disasters, they jumpstart ad hoc search-and-rescue units and evacuation teams. In pandemics, they knit masks and design new treatments. 

If we take seriously the idea that much of what we believe about the moral breakdown of society during disasters is wrong, then new ethical possibilities emerge. We need philosophical interventions in disaster response that complement the sociological findings that community is the primary source of aid and support in disasters. While the CDC’s pandemic planning guidelines call for a suspension of some dimensions of autonomy to slow the transmission of a virus (Kinlaw and Levine 2007, 4), feminist bioethicists argue that a relational account of autonomy attunes us not to the suspension of liberties enacted in a pandemic, but to the transformations of relationships and rights required to keep us collectively safe (Bayliss, Kenny, and Sherwin 2008, 6; Sherwin and Stockdale 2017). By emphasizing the political dimension of our social locations and relationships, relational autonomy understands persons as inherently interconnected, attending to the ways that the options available to individuals are shaped by existing relationships, institutions, and axes of marginalization and risk (Sherwin and Stockdale 2017; Bayliss, Kenny, and Sherwin 2008, 6–7).

Relational approaches to autonomy are well-suited to the moral challenges of a pandemic, challenging standard accounts of bioethics developed in an era when many experts assumed that infectious diseases had been conquered by modern medicine. While standard accounts of autonomy in bioethics have assumed that it is possible to make choices for oneself without harming others, a relational approach can make sense of the ways that highly infectious diseases make this distinction untenable (Francis et al. 2005, 307; Selgelid 2005, 274). Accordingly, Margaret Battin and Leslie Francis urge bioethicists to understand patients of infectious disease as bearing both the rights of victims and the responsibilities of vectors (Battin et al. 2005). They distinguish their account of the relational autonomy of contagion from feminist formulations, attending to physical (rather than social) location and tracking collective responsibility in accidental encounters among strangers, rather than in intimate, dependent, and chosen relationships (Battin et al. 2008, 79). 

In a public health disaster shaping a global economic emergency, however, we argue that the ethical commitments of response must be grounded in an account of agents as vulnerable vectors who are embedded in relationships—specifically, relationships of caregiving. This account shifts the focus of any pandemic response from the rights of those who are infected to our universal but unevenly distributed vulnerability to the disease, directing our attention to the systemic and institutional structures that unevenly produce vulnerability and resilience (Bayliss, Kenny, and Sherwin 2008; Fineman 2010).

Our emphasis on vulnerability both aligns with and challenges new social vulnerability models for prioritizing “at risk groups” in disaster preparedness and response (Jennings and Arras 2008). The CDC’s Social Vulnerability Index uses demographics to categorize, rank, and map populations who share characteristics ranging from oxygen dependency, to advanced age, to poverty in an effort to help planners locate and assist them as they may be “disproportionately impacted by an incident or event” (CDC 2015). But, as critics have argued, indices such as these fail to capture the complex interdepencies of disaster vulnerability (Rufat et al. 2019). In COVID-19, as both the virus and fear of contagion “infect” people and lead to behavioral change, vulnerability is complex and fluid, spreading through existing and emergent matrices of inequality (Hynes et al. 2020).

Our collective status as vectors requires us to do more than identify “at risk” populations and the burdens of health care workers, but to track the ways that wealth and privilege were themselves vectors of the virus, spreading contagion around the world through travel, moving it from urban centers to rural communities via second homes (Peterson 2020), and in several notable cases, spreading it across communities through drunken, “coronavirus themed” parties (Waldrop and Gallman 2020; Williamson and Hussey 2020). Minimizing vulnerability and vectorhood through social distancing and telecommuting was itself an act of privilege, while acquiring everyday necessities like groceries made an already precarious class of “essential workers” shoulder the risks of infection. In doing so, they became vectors of contagion in their own families and communities. Thus, vulnerability analysis must be embedded into pandemic planning, understanding it not as a static characteristic of populations but something produced through the pandemic and the response itself. We can track how agents operate as vulnerable vectors only through a multidimensional account of the complex systems through which vulnerability produces vectors of both contagion and dependency in the ongoing public health, social, and economic fallout of pandemic (Fineman 2008; Hynes et al. 2020; May 2015).

Our account of agents in a pandemic as vulnerable vectors, therefore, calls us to shift both the moral frameworks that organize response and the disaster imaginary that shapes our moral sensibilities. We need not just new tools, but new stories. In the remainder of the paper, we suggest a disaster imaginary that makes sense of our status as vectors and an accompanying ethical framework for response that centers on the multidimensional experience and elaboration of vulnerability.

4. We Are The Essential Resources: A New Disaster Imaginary

 In the pandemic, our status as vectors of infection has made us aware of—and wary of—our interconnectedness in new ways. This awareness, we argue, calls for a new disaster imaginary to orient our moral awareness, including our formulation of ethical dilemmas, the premises and priorities that we bring to our normative reasoning, and our motivations for action.

Even as pandemic public discourse has focused on the scarcity of resources, calls to solidarity have been everywhere, as we have been called to social distance as “an act of love” (Zahniser and Smith 2020) and, amidst assurances that most of us would experience relatively mild symptoms, we shuttered schools and businesses in solidarity with those whose immune systems would not withstand the virus. Angus Dawson and Bruce Jennings argue that solidarity should be understood as a “shaping sensibility” for ethics, an orientation that makes ethical decision making possible (Jennings and Dawson 2015a, 32). But solidarity has largely been absent from pandemic preparedness and disaster ethics. Dawson and Jennings recount how, as the North Carolina Public Health Task Force formulated their pandemic plan, they rejected solidarity as “not important” to Americans, who were understood as primarily focused on their “individual lives” (Dawson and Jennings 2012, 71). When calls to solidarity do arise, they are sometimes dismissed as the solidarity of mutual survival or self-interest (Dawson and Jennings 2012, 74) which are often short-lived in a disaster (Jennings and Arras 2008, 12).

We argue that calls to solidarity are harbingers of an alternative, emergent disaster imaginary that harnesses our uneasy awareness of our interconnectedness as vulnerable vectors of contagion. Solidarity, for example, helps us to make sense of why pandemics are a particularly morally damaging kind of disaster. COVID-19 exploits our interconnectedness, spreading most quickly where community ties are the tightest, often through communal practices of mourning and celebration. In Albany, Georgia, a funeral became a “super spreader” event, giving this small city one of the highest rates of confirmed coronavirus in the country (Barry 2020); New Orleans’s Mardi Gras festival may have contributed to the high number of cases in the city (Faussett and Kravitz 2020). To slow the spread of the virus, we are called to close down local spaces for connection and suspend the institutions through which we rely on one another; the subsequent economic fallout is not the result of scarcity, but of our interconnectedness.

These obligations to social distance do not reflect a social contract (Kessler 2020), in which we are equal, rights-bearing agents, but a recognition that we are members of and vectors in a community as interconnected and vulnerable as a single organism. This conception of solidarity draws on the ethics of uBuntu, which coalesced in apartheid South Africa to shape a revolutionary solidarity from a context of brutal rupture. uBuntu’s central principle that “a person is a person through other persons,” conceives of us as embedded, embodied beings, interdependent on one another for our very identities and life projects—and, in a pandemic, for survival (Sambala, Cooper, and Manderson 2020; Berghs 2017; Shutte 2009, 93–94; Thomas 2008).

uBuntu transforms our disaster imaginary by treating us as one another’s most essential resources. In doing so, it allows us to see the mundane challenges of the pandemic as moral hardships and dilemmas. Social distancing reveals how deeply we are ourselves through and with each other; many of us are profoundly lonely. Others, meanwhile, are cloistered at home with our children of varying ages, standing up ad hoc homeschools, structuring hours and days and weeks without the everyday partnerships we rely on—without teachers, friends, grandparents, babysitters, coaches, counselors, and pastors. It is deeply strange, unnatural, and morally damaging not to share one’s children, not to share in the project of helping them grow. The burden is nearly impossible for one person or one set of parents to share. We are discovering how parenting is sustainable only because of one another, how our own moral projects depend upon communal and institutional arrangements that allow our children—and ourselves—to grow together.

This perspective helps to make clear how much a disaster imaginary grounded in the state of nature fixes our moral attention on scarcity and the allocation of resources. uBuntu helps us see that this is not the only moral priority. The tragedy of our dangerously overwhelmed health care system is not only that there are not enough ventilators to go around. It is also that people must suffer alone, must die alone, must give birth alone; it is that our system is so broken that even a basic right to human company must be surrendered (Goldstein and Weiser 2020). Many of us fear not just getting sick, not just dying, but dying alone. Many who are grieving are grieving because they could not be present for a person essential to them, for birth or for death or for suffering. We are grieving not just the inevitable moral failures that will come from lack of resources, but from the lack of humanness, of being human with and through one another. These, too, are moral failures.

uBuntu’s moral imaginary is relational and emergent in ways that reshape the moral priorities of response. It values a multidimensional appreciation of “otherness,” an awareness of how individuals shape their communities even as their communities shape them (Berghs 2017; Eze 2008). This sharpens our awareness of how our interconnectedness is organized through existing and emergent inequalities, as when already vulnerable “essential workers” and their families are required to disproportionately shoulder the risk of contagion, and sheltering in place is itself a mark of privilege. But uBuntu’s multidimensional conception of solidarity is also a shared commitment to the future, a process through which we are continuously becoming ourselves through one another even in conditions of rupture (Eze 2008). Unlike the state of nature imaginary, it does not conceive of disaster as a suspension of our normal priorities; its goal is not a “return” to our “normal” commitments. It understands us to be transformed by disaster. Nor is it consequentialist in the utilitarian sense, focused on measuring efficacy through concrete outcomes. Rather, it is futurist, orienting us towards the new world shaped by both the disaster and the response itself (Van Binsbergen 2001). In this sense, it is particularly well-suited to the extended nature of pandemics as our perceptions of ourselves, our communities, and our moral horizons are permanently reoriented.

The problems we encounter in disasters, and the responses we build, are transformed when our collective energy and imagination is oriented through the understanding that, as vulnerable vectors, we are “persons through other persons.” The history and sociology of disasters show that this inclination to solidarity is present in survivors already (Solnit 2010; Drabek 2016; Quarantelli 1999); reframing our story of disaster to unleash the powers of this perception would both alter the problems we see in disasters and increase our power to aid them. In the next section, we show how the perceptual shift that uBuntu’s disaster imaginary grounds is a multidimensional approach to supporting the networks that care for the vulnerable.

5. Vulnerable Vectors and the Labor of Care: Pandemic Care Ethics

In New York City, as COVID-19 cases surged and the city felt like a place under siege, traffic replaced by endless ambulance sirens, the federal government deployed the USNS Comfort to the city. The hospital ship docked in New York Harbor to celebrations, a symbol of rescue, staffed by navy medical personnel immediately greeted as heroes. But in fact, the ship treated only 182 patients over a three week period when the number of COVID-19 cases in New York City was well over two thousand a day (Fuentes 2020; NYC Health 2020); it was the existing, over-crowded hospitals that absorbed the surge, not the ship that had become a symbol of the impotence of a militarized, “heroic” response. The USNS Comfort sat on the edge of Manhattan, a visceral reminder that response is most effective when it fully empowers local responders.

In this section, we turn from our shared disaster imaginary to the ethics of response. We know that local responders are interconnected, each a vulnerable vector embedded in a set of caregiving relationships. To succeed, a pandemic response should somehow surge and support these existing care networks, including both responders and their dependent relationships. In making this move, we draw on the ethics of care, theorized originally by feminists seeking to transform our moral intuitions by insisting that what characterizes humanity is that all of us are vulnerable, and, at some point or another, dependent on one another for survival and flourishing (Engster 2005, 59; Kittay 2001). We argue that care ethics’ epistemic orientation towards the needs, capabilities, and preferences of the vulnerable should shape the institutional patterns and priorities of response (Engster 2005, 54–55) orienting a responsive state that surges existing and emergent response networks that care for the vulnerable (Fineman 2008). The shifts in perspective harnessed by uBuntu’s disaster imaginary of emergent solidarity enrich this multidimensional account of care, expanding our perception of the moral dilemmas of the pandemic and orienting our awareness to the ongoing transformation of our relationships and networks. 

Care begins with attentiveness to vulnerability, arguing that the universality of vulnerability produces a universal duty to care (Engster 2005). We discharge this duty through existing networks, relationships, and institutional arrangements, as well as by developing emergent strategies for extending those structures in emergencies both mundane and catastrophic. Emergency Management doctrine aligns with this, advocating that all emergencies are fundamentally local (FEMA 2017). We know from the sociology of disasters that neighborhood assets, like regular community members and clinics or hospitals, are much more likely to provide care than any mythical response entities or Navy ships. But care ethics complicates the distinction between “responders” and “victims,” instantiating the value of “whole community” response by recognizing survivors as participants in networks of care: much of the labor of disaster response, from search and rescue to the identification and protection of the vulnerable, is done by survivors themselves, through existing community ties and organizations (Drabek 2016). Understanding the labor of response as a collective project requires us to rethink the story of moral heroism in disasters, challenging savior narratives and reminding us that communities in rupture tend to save themselves. 

In the COVID-19 pandemic, support for first responders has too often taken the form of empty celebrations of heroism: We do not have masks for you doctors, but we will clap for you, is the unfortunate refrain. In a utilitarian framing of disaster response, heroes are those who take on the impossible task of determining which sacrifices are “acceptable”: which patient gets a ventilator, who makes it out of a flooded hospital. We are comforted by this familiar action-hero vision of heroism, even as it assures us that these sacrifices are acceptable in impossible circumstances. And the narrative of heroism also insists on the autonomy of the hero, thus absolving us of collective responsibility for the structural failures that produced circumstances requiring heroism. The “essential workers” we celebrate as heroes are often underpaid line staff doing difficult or mundane work without benefits or employment protections. Yes, these staff may be personally exceptionally brave and self-sacrificing, but proclaiming them “heroic” is theater. It imagines them as autonomous agents discharging a supererogatory duty, and thus it obscures the patterns of vulnerability and dependency that leave them little choice but to expose themselves to mortal danger (Jennings and Arras 2008, 117–120).

But care is rarely supererogatory; it is mundane by definition (Engster 2005). Grounded in the moral realities of mothering, care ethics orients our moral admiration away from discrete and awe-inspiring acts of heroism and towards the repetitive labor of reproducing ourselves and one another even in times of crisis. Responders and essential workers, in this framework, are best understood not as heroes but as caregivers—still entitled to admiration but reliant on something much more crucial: sustainable support. As New York’s existing hospitals surged to treat mountains of cases, doctors, nurses, EMTs, janitorial and other hospital staff were infected in alarmingly high numbers, and the state ran out of personal protective equipment (PPE) in the first weeks of response (Manjoo 2020). But PPE, although critical, is not the whole story. Since caregivers are vulnerable to contagion, they become vectors in their families and communities. Surging caregiving requires the state to provide, innovate, and invent resources to support this expanding chain of vulnerability to keep the chain of caregivers intact.

A response oriented through a multidimensional account of care must concern itself both with surging networks of care and with the sustainability of that surge. Care itself is a vector of vulnerability, what Martha Fineman calls a “derivative dependency,” arising as those providing care need additional resources and support in order to continue effectively supporting others (Fineman 2004, 57–58). Supporting health care workers means attending to new dimensions of vulnerability as other family members take on primary childcare duties, as health care workers deemed high risk are kicked out of apartment buildings or as new workers step in to take over when frontline responders become ill; it means tracking and redeeming the economic and mental health costs borne by civilians who form the front line of pandemic response. 

Against the consequentialist moral calculus of utilitarianism, always focused on the linear phases of disaster—impact, response, recovery—care harnesses uBuntu’s understanding of emergencies as unfolding in time, through repetitive labor as one vulnerability begets another. This is critical in a pandemic, in which the timeline of response is indeterminate; caring networks can be effective over time only when they support caregivers, rather than reproducing greater vulnerability. 

In the CDC’s ethical guidelines for a pandemic, little attention was paid to the distribution and elaboration of vulnerability within existing, essential networks of care (Kinlaw and Levine 2007; Jennings and Arras 2008, 115). While the protocols enacted to “flatten the curve” are best understood as a collective act of care that treat all of us as responders complicit in containing contagion, these policies have strained every system of caregiving in our society to its breaking point, from our state governments to our largest hospitals, from nursing homes to families. Nuclear and intergenerational families, with their embedded patterns of gendered labor, have been expected to absorb these shocks. Parents and other caregivers found themselves in the impossible position of juggling suddenly full-time care labor with full time work responsibilities or the stresses and uncertainties of unemployment.

The distribution of this strain has not been even; just as women shoulder the bulk of care labor in “normal” times, it is women whose caretaking labor has been strained to the breaking point in COVID-19. As women face increased duties of care within the home that will reduce working hours, they accounted for more than half of the jobs lost in April 2020, with unemployment rates for women of color creeping over 20% (Gupta 2020). Even among highly educated women, the strain will transform career and earning trajectories, as academic journals report an unprecedented drop in journal submissions by women and in some cases an increase in submissions by men (Fazackerley 2020; Kitchener 2020). Studies of recent epidemics, like Zika and Ebola, show that while income levels generally dropped immediately following the outbreak, men’s earnings eventually recovered, while women’s did not (Lewis 2020). In the current pandemic, as childcare providers are amongst the hardest hit, women may find it difficult work in an already strained economy (Kennedy and Mayshak 2020). And even as women face disproportionate hardships in the social and economic fallout from pandemic response, they also make up the bulk of essential laborers providing the caregiving of response (Robertson and Gebeloff 2020). Often caregivers themselves, responders and essential workers faced untenable obligations exacerbated by a persistent overlooking of the multidimensional nature of caregiving networks. 

Just as vulnerability is unevenly distributed, the labor of care is unequally shared, and those who take on the bulk of caregiving labor become additionally vulnerable. We misunderstand the nature of the disaster when we focus on moral dilemmas and heroic choices, rather than attuning ourselves to the matrix of ripple effects that produce a strikingly raced and gendered pattern of pandemic labor. A care ethics response framework calls us to expand our conception of disaster response by rethinking our “normal” moral priorities and practices, by prioritizing attentiveness to vulnerability and developing responsive structures that both surge caregiving and build collective responsibility for the resilience of caregivers. In this way, it offers us a concrete moral structure for enacting commitments to solidarity through sustainably extending existing networks of care.

6. Surging and Sustaining Solidarity

In New York City as March faded, COVID-19 cases spiked. At Elmhurst Hospital, in Queens, patients jammed hallways as the neighborhood death toll mounted. Ventilator allocation was at the forefront of many minds (Mcvane 2020; Correal, Jacobs, and Jones 2020). Ethical guidelines for allocating scarce medical resources in New York State organized around the modified utilitarian “save the most lives” approach, giving preference to health care and other essential workers, to the young over the old, to the healthy over the unhealthy (Wikler 2020; New York State 2015). Terrible decisions would have to be made.

Just like Lombardy, acceptable sacrifice was the utilitarian narrative these doctors had accepted to prevent chaos. Just like Johannesburg, the impact and response were racialized, with many more people of color dying based on underlying structures of racial injustice. Just like Memorial in New Orleans, staff accepted this descent into chaos and isolation as a natural part of the disaster. They believed it had to be that way.

But within twenty minutes of Elmhurst lay more than 3,000 empty hospital beds. Not reported in the news, perhaps, but there. Ready. Under the pressure of the pandemic, New York City, like Lombardy, had created a network of care designed to responsively share resources, the staff at Elmhurst were able to redefine their trolley problem. They recognized that their localized vulnerability was embedded in an interconnected network that surged to support them, and those patients were transferred instead of unfairly triaged (Dwyer 2020). 

As this perceptual shift at Elmhurst shows, once we understand ourselves as interconnected, we can collectively construct a disaster imaginary of solidarity. In this way, pandemics can be ethically innovative disasters. Their cruelty is in their exponential spread as they exploit our interconnectedness, infecting a network node by node. But in doing so, they make our interconnectedness, our relationships as vulnerable vectors, visible. We can use this new awareness to surge response by supporting those providing care. In COVID-19, we see uBuntu’s awareness of our interconnectedness, of the ways that the community makes possible the individual, and vice versa. In networks springing up to feed and transport frontline workers, to babysit their kids, we see care ethics’ attunement to the ways that surging caregiving through existing networks produces new vulnerabilities, requiring emergent strategies of care. The extended and uncertain nature of the pandemic requires us to learn to sustainably surge these networks of care (Tolentino 2020). 

But our interconnectedness as vulnerable vectors is not simply the result of the infectious nature of the virus. Our analysis of the derivative nature of dependency in care networks suggests that we are always vectors of vulnerability in crisis. In closing, we point to the ways that other disasters, too, are characterized by the strains on multidimensional networks of care, as emergent dependencies exacerbate existing inequalities and beget new dimensions of vulnerability. Our framework understands disasters as producing networks of interlinked people who need care and are giving it; the ethics we propose will help to surge and sustain that entire network, not force us to break it apart and choose between the pieces.

REFERENCES

AMA Ed Hub. 2020. “Coronavirus in Italy-Report From the Front Lines.” Accessed May 30, 2020. https://edhub.ama-assn.org/jn-learning/audio-player/18317079.

Barry, Ellen. 2020. “Days After a Funeral in a Georgia Town, Coronavirus ‘Hit Like a Bomb.’” The New York Times, March 30. Accessed May 5, 2020. https://www.nytimes.com/2020/03/30/us/coronavirus-funeral-albany-georgia.html.

Battin, Margaret P., Leslie P. Francis, Jay A. Jacobson, and Charles B. Smith. 2008. The Patient as Victim and Vector: Ethics and Infectious Disease. Oxford: Oxford University Press.

Bayliss, Françoise, Nuala P. Kenny, and Susan Sherwin. 2008. “A Relational Account of Public Health Ethics.” Public Health Ethics 1 (3): 196–209.

Begley, Sharon. 2020. “Ventilators Are Overused for COVID-19 Patients, Doctors Say.” STAT, April 8. https://www.statnews.com/2020/04/08/doctors-say-ventilators-overused-for-COVID-19/.

Berghs, Maria. 2017. “Practices and Discourses of Ubuntu: Implications for an African Model of Disability?” African Journal of Disability (Online) 6: 1–8.

di Blasi, Erica. 2020. “Italians Over 80 Left to Die.” The Telegraph. March 14. Accessed April 1, 2020. https://www.telegraph.co.uk/news/2020/03/14/italians-80-will-left-die-country-overwhelmed-coronavirus/.

Brewster, Jack. 2020. “87% of the States that have Reopened Voted for Trump in 2016.” Forbes, May 5. Accessed May 15, 2020. https://www.forbes.com/sites/jackbrewster/2020/05/05/87-of-the-states-that-have-reopened-voted-for-trump-in-2016/#5170feaa2426.

Centers for Disease Control and Prevention (CDC). 2015. Planning for an Emergency: Strategies for Identifying and Engaging At-Risk Groups. A Guidance Document for Emergency Managers, First Edition. Atlanta.

Correal, Annie, Andrew Jacobs, and Ryan Christopher Jones. 2020. “‘A Tragedy Is Unfolding’: Inside New York’s Virus Epicenter.” The New York Times, April 9. https://www.nytimes.com/2020/04/09/nyregion/coronavirus-queens-corona-jackson-heights-elmhurst.html.

Cunningham, Paige. 2020. “Coronavirus is Shifting from Urban Areas to Rural Ones.” Washington Post, May 6. Accessed May 15, 2020. https://www.washingtonpost.com/news/powerpost/paloma/the-health-202/2020/05/06/the-health-202-coronavirus-is-shifting-from-the-urban-areas-to-rural-ones/5eb1913b602ff15fb00257f8/.

Dawson, Angus, and Bruce Jennings. 2012. “The Place of Solidarity in Public Health Ethics.” Public Health Reviews 34 (1): 4.

Drabek, Thomas E. 2016. The Human Side of Disaster. Boca Raton: CRC Press.

Dwyer, Jim. 2020. “One Hospital Was Besieged by the Virus. Nearby Was ‘Plenty of Space.’” The New York Times, May 14. https://www.nytimes.com/2020/05/14/nyregion/coronavirus-ny-hospitals.html.

Engster, Daniel. 2005. “Rethinking Care Theory: The Practice of Caring and the Obligation to Care.” Hypatia 20 (3): 50-74.

Eze, Michael Onyebuchi. 2008. “What is African Communitarianism? Against Consensus as a Regulative Ideal.” South African Journal of Philosophy 27 (4): 386–99.

Fausset, Richard, and Derek Kravitz. 2020. “Why New Orleans Pushed Ahead with Mardi Gras, Even as It Planned for Coronavirus.” The New York Times, April 13. Accessed May 15, 2020. https://www.nytimes.com/2020/04/13/us/coronavirus-new-orleans-mardi-gras.html.

Fazackerley, Anna. 2020. “Women’s Research Plummets During Lockdown – But Articles from Men Increase.” The Guardian, May 12. Accessed May 12, 2020. https://www.theguardian.com/education/2020/may/12/womens-research-plummets-during-lockdown-but-articles-from-men-increase.

FEMA (Federal Emergency Management Agency). 2011. A Whole Community Approach to Emergency Management: Principles, Themes, and Pathways for Action. Washington: US Department of Homeland Security.

––––––. 2017. National Incident Management System. Washington: US Department of Homeland Security.

Fineman, Martha Albertson. 2004. The Autonomy Myth: A Theory of Dependency. London: New Press.

–––––– 2008. “The Vulnerable Subject: Anchoring Equality in the Human Condition.” Yale Journal of Law and Feminism 20:1. 

–––––– 2013. Vulnerability: Reflections on a New Ethical Foundation for Law and Politics. Burlington: Ashgate Publishing, Ltd.

Fink, Sheri. 2009. “Deadly Choices at Memorial.” The New York Times, August 25. Accessed April 6, 2020. https://www.nytimes.com/2009/08/30/magazine/30doctors.html.

–––––– 2013. Five Days at Memorial: Life and Death in a Storm-ravaged Hospital. Camden: Atlantic Books Ltd.

Francis, Leslie P., Margaret P. Battin, Jay A. Jacobson, Charles B. Smith, and Jeffrey Botkin. 2005. “How Infectious Diseases Got Left Out–and what this Omission Might Have Meant for Bioethics.” Bioethics 19 (4): 307–22.

Fuentes, Gidget. 2020. “Hospital Ship Comfort Ends NYC COVID-19 Mission After Treating 182 Patients.” USNI News, April 27. Accessed May 15, 2020. https://news.usni.org/2020/04/27/hospital-ship-comfort-ends-nyc-COVID-19-mission-after-treating-182-patients.

Goldstein, Joseph, and Benjamin Weiser. 2020. “‘I Cried Multiple Times’: Now Doctors Are the Ones Saying Goodbye.” The New York Times, April 13. Accessed May 1, 2020. https://www.nytimes.com/2020/04/13/nyregion/coronavirus-nyc-doctors.html.

Grasselli, Giacomo, Antonio Pesenti, Maurizio Cecconi. 2020. “Critical Care Utilization for the COVID-19 Outbreak in Lombardy, Italy: Early Experience and Forecast During an Emergency Response (And associated interview)” JAMA 323 (16): 1545–46. doi:10.1001/jama.2020.4031.

Gupta, Alisha Haridasani. 2020. “Why Some Women Call This Recession a ‘Shecession.’”The New York Times, May 8. Accessed May 10, 2020.https://www.nytimes.com/2020/05/09/us/unemployment-coronavirus-women.html.

Haberman, Maggie, and David E. Sanger. 2020. “Trump Says Coronavirus Cure Cannot ‘Be Worse Than the Problem Itself.’” The New York Times, March 23. Accessed May 1, 2020. https://www.nytimes.com/2020/03/23/us/politics/trump-coronavirus-restrictions.html.

Hick, John L., Dan Hanfling, Matthew K. Wynia, and Andrew T. Pavia. 2020. “Duty to Plan: Health Care, Crisis Standards of Care, and Novel Coronavirus SARS-CoV-2.” National Academy of Medicine, April 3. https://nam.edu/duty-to-plan-health-care-crisis-standards-of-care-and-novel-coronavirus-sars-cov-2/.

Hynes, William, Benjamin Trump, Patrick Love, and Igor Linkov. 2020. “Bouncing Forward: A Resilience Approach to Dealing with COVID-19 and Future Systemic Shocks.” Environmental Systems and Decisions. https://doi.org/10.1007/s10669-020-09776-x

Ives, Jonathan. 2020. “Coronavirus May Force U.K. Doctors to Decide Who They’ll Save.” The Guardian, March 14. Accessed May 1, 2020. https://www.theguardian.com/commentisfree/2020/mar/14/coronavirus-outbreak-older-people-doctors-treatment-ethics

Jennings, Bruce, and Angus Dawson. 2015a. “Solidarity in the Moral Imagination of Bioethics.” Hastings Center Report 45 (5): 31–38.

Jennings, Bruce, and John Arras. 2008. “Ethical Guidance for Public Health Emergency Preparedness and Response: Highlighting Ethics and Values in a Vital Public Health Service.” Centers for Disease Control and Prevention. October 30.

Kennedy, Lauren Birchfield, and Katie Mayshak. 2020. “Your Childcare Center Probably Won’t Survive the Pandemic.” The New York Times, May 20. Accessed May 20, 2020. https://www.nytimes.com/2020/05/20/opinion/child-day-care-coronavirus.html.

Kessler, David. 2020. “We Need a New Social Contract for Coronavirus.” The New York Times April 20. Accessed April 20, 2020. https://www.nytimes.com/2020/04/20/opinion/coronavirus-social-contract.html.

Kinlaw, Kathy, and Robert Levine (Center for Disease Control). 2007. “Ethical Guidelines in Pandemic Influenza—Recommendations of the Ethics Subcommittee of the Advisory Committee to the Director.” Centers for Disease Control and Prevention. February 15. Accessed April 5, 2020. http://www.cdc.gov/od/science/phec/panFlu_Ethic_Guidelines.pdf

Kitchener, Caroline. 2020. “Women Academics Seem to be Submitting Fewer Papers During Coronavirus. ‘Never Seen Anything Like It,’ Says One Editor.” The Lily, April 24. Accessed April 24, 2020. www.thelily.com/women-academics-seem-to-be-submitting-fewer-papers-during-coronavirus-never-seen-anything-like-it-says-one-editor/

Kittay, Eva Feder. 2001. “A Feminist Public Ethic of Care Meets the New Communitarian Family Policy.” Ethics 111 (3): 523–47.

Levin, Bess. 2020. “Texas Lt. Governor: Old People Should Volunteer to Die to Save the Economy.” Vanity Fair, March 24. Accessed April 1, 2020. https://www.vanityfair.com/news/2020/03/dan-patrick-coronavirus-grandparents

Lewis, Helen. 2020. “The Coronavirus Is a Disaster for Feminism.” The Atlantic, March 19. Accessed April 1, 2020. https://www.theatlantic.com/international/archive/2020/03/feminism-womens-rights-coronavirus-COVID19/608302/

Manjoo, Farhad. 2020. “How the World’s Richest Country Ran Out of a 75-Cent Face Mask.” The New York Times, March 25. Accessed May 15, 2020. https://www.nytimes.com/2020/03/25/opinion/coronavirus-face-mask.html.

May, Vivian M. 2015. Pursuing Intersectionality, Unsettling Dominant Imaginaries. New York: Routledge.

Mcvane, Ben. 2020. “I’m a Doctor at the ‘Epicenter of the Epicenter.’” The New York Times, April 5. https://www.nytimes.com/2020/04/05/opinion/coronavirus-elmhurst-queens.html.

Mills, Charles. 1997. The Racial Contract. Ithaca: Cornell University Press.

Mounk, Yascha. 2020. “The Extraordinary Decisions Facing Italian Doctors.” The Atlantic, March 11. Accessed April 6, 2020. https://www.theatlantic.com/ideas/archive/2020/03/who-gets-hospital-bed/607807/.

NYC Health. 2020. “COVID-19: Data” Website Data Extract. Accessed May 15, 2020. http://www1.nyc.gov/site/doh/COVID/COVID-19-data.page 

New York State Task Force on Life and the Law. 2015. Ventilator Allocation Guidelines. New York State Department of Health. Accessed May 15, 2020. https://www.health.ny.gov/regulations/task_force/reports_publications/docs/ventilator_guidelines.pdf

New York Times Editorial Board. 2020. “Failing to Help Those Who Need It Most.” The New York Times, April 24. Accessed May 15, 2020. https://www.nytimes.com/2020/04/24/opinion/coronavirus-stimulus-failure.html.

Peterson, Anne Helen. 2020. “This Pandemic Is Not Your Vacation.” Buzzfeed News, March 31. Accessed May 5, 2020. https://www.buzzfeednews.com/article/annehelenpetersen/coronavirus-COVID-cities-second-homes-rural-small-towns.

Phillips, Howard. 2012. Plague, Pox and Pandemics. Johannesburg: Jacana Press.

Quarantelli, Enrico L. 2005. “Catastrophes are Different from Disasters: Some Implications for Crisis Planning and Managing Drawn from Katrina.” In Online Forum and Essays–Social Science Research Council

–––––– 1999. “Disaster Related Social Behavior: Summary of 50 Years of Research Findings.” Disaster Research Center. Accessed May 7, 2020. http://udspace.udel.edu/handle/19716/289

Robertson, Campbell, and Robert Gebeloff. 2020. “How Millions of Women Became the Most Essential Workers in America.” The New York Times, April 18. Accessed April 18, 2020. https://www.nytimes.com/2020/04/18/us/coronavirus-women-essential-workers.html

Rosenbaum, Lisa. 2020. “Facing COVID-19 in Italy—Ethics, Logistics, and Therapeutics on the Epidemic’s Front Line.” New England Journal of Medicine 382 (20): 1873–75.

Rufat, Samuel, Eric Tate, Christopher T. Emrich, and Federico Antolini. 2019.  “How Valid are Social Vulnerability Models?.” Annals of the American Association of Geographers 109(4): 1131-1153.

Sambala, Evanson Z., Sara Cooper, and Lenore Manderson. 2020. “Ubuntu as a Framework for Ethical Decision Making in Africa: Responding to Epidemics.” Ethics & Behavior 30 (1): 1–13.

Sherwin, Susan, and Katie Stockdale. 2017. “Whither Bioethics Now? The Promise of Relational Theory.” International Journal of Feminist Approaches to Bioethics 10 (1): 7–29.

Schneider, Saundra K. 2014. Dealing with Disaster: Public Management in Crisis Situations: Public Management in Crisis Situations. New York: Routledge.

Selgelid, Michael J. 2005. “Ethics and Infectious Disease.” Bioethics 19 (3): 272–89.

Shutte, Augustine. 2009. “Ubuntu: The African Ethical Vision.” In African Ethics: An Anthology of Comparative and Applied Ethics, edited by Munyaradzi Felix Murove, 85–101. South Africa: University of KwaZulu-Natal Press.

Smith, Maxwell J., and Ross E.G. Upshur. 2015. “Ebola and Learning Lessons from Moral Failures: Who Cares about Ethics?” Public Health Ethics 8 (3): 305–18.

Solnit, Rebecca. 2010. A Paradise Built in Hell: The Extraordinary Communities that Arise in Disaster. New York: Penguin.

Southall, Ashley. 2020. “Scrutiny of Social Distancing Policing as 35 of 40 Arrested are Black.” The New York Times, May 7. Accessed May 7, 2020. https://www.nytimes.com/2020/05/07/nyregion/nypd-social-distancing-race-coronavirus.html.

Tessman, Lisa. 2017. When Doing the Right Thing is Impossible. Oxford: Oxford University Press.

Thomas, Christopher G. 2008. “Ubuntu: The Missing Link in the Rights Discourse in Post-Apartheid Transformation in South Africa.” International Journal of African Renaissance Studies 3 (20): 39–62.

Tierney, Kathleen. 2014. The Social Roots of Risk: Producing Disasters, Promoting Resilience. Palo Alto: Stanford University Press.

Tolentino, Jia. 2020. “What Mutual Aid Can Do During a Pandemic.” The New Yorker, May 11. Accessed May 11, 2020. https://www.newyorker.com/magazine/2020/05/18/what-mutual-aid-can-do-during-a-pandemic.

Van Binsbergen, W. M. 2001. “Ubuntu and the Globalisation of Southern African Thought and Society.” Quest 15: 37. 

Vergano, Marco, et al. 2020. Clinical Ethics Recommendations for the Allocation of Intensive Care Treatments, In Exceptional, Resource-Limited Circumstances. Italian Society of Anesthesia, Analgesia, Resuscitation and Intensive Care (SIAARTI). Accessed May 19, 2020: http://www.siaarti.it/News/COVID19%20-%20documenti%20SIAARTI.aspx.

Vishwanathan, Padma. 2017. “A Paradise Built in Hell: The Rumpus Interview With Rebecca Solnit.” The Rumpus, November 8. Accessed May 15, 2020. https://therumpus.net/2009/08/a-paradise-built-in-hell-the-rumpus-interview-with-rebecca-solnit/.

Waldrop, Theresa and Stephen Gallman. 2020. “A group of young adults held a coronavirus party in Kentucky to defy orders to socially distance. Now one of them has coronavirus.” CNN, March 25. Accessed May 5, 2020. https://www.cnn.com/2020/03/24/health/kentucky-coronavirus-party-infection/index.html

Warzel, Charlie. 2020. “Open States, Lots of Guns. America Is Paying a Heavy Price for Freedom.” The New York Times, May 5. Accessed May 5, 2020. https://www.nytimes.com/2020/05/05/opinion/coronavirus-deaths.html.

Wikler, Daniel. 2020. “Here are Rules Doctors Can Follow When They Decide Who Gets Care and Who Dies.” The Washington Post, April 1. Accessed April 1, 2020. https://www.washingtonpost.com/outlook/2020/04/01/ration-ventilators-beds-coronavirus/

Williamson, Elizabeth, and Kristin Hussey. 2020. “Party Zero: How a Soirée in Connecticut Became a ‘Super Spreader.’” The New York Times, March 23. Accessed May 1, 2020. https://www.nytimes.com/2020/03/23/us/coronavirus-westport-connecticut-party-zero.html

World Health Organization (WHO). 2020. COVID-19 and Violence Against Women: What the Health Sector/System Can Do. April 7. No. WHO/SRH/20.04. 

Zack, Naomi. 2009. Ethics for Disaster. Lanham: Rowman and Littlefield.

Zahniser, David, and Dakota Smith. 2020. “Amid a Crisis, Mayor Garcetti Talks to L.A. Each Night about Distancing, Masks, and Love.” L.A. Times, April 13. Accessed May 15, 2020. https://www.latimes.com/california/story/2020-04-13/garcetti-coronavirus-briefings-distancing-masks-love.


Special Issue, Uncategorized

How Soviet Legacies Shape Russia’s Response to the Pandemic: Ethical Consequences of a Culture of Non-Disclosure

Nataliya Shok & Nadezhda Beliakova

[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]

ABSTRACT. The COVID-19 pandemic required strong state responsibility for the health of its citizens and the effective allocation of healthcare resources. In Russia, extreme circumstances reveal hidden Soviet patterns of public health. This article illuminates how Russia has implemented some changes within its health insurance structures but also has maintained the paternalistic style of state governing within public health practices. The authors examine key neo-Soviet trends in Russian society revealed during the pandemic: the ethics of silence, a culture of non-disclosure, and doublethinking. Additionally, we argue that both modern Russian medicine and healthcare demonstrate gaps in implementing robust bioethical frameworks compared with the United States. Using a robust analysis of healthcare and state practice during the COVID-19 pandemic within the framework of global bioethics, this article aims to respond to Russian history and culture in order to advance the development of bioethics.

INTRODUCTION

The global COVID-19 pandemic has quickly and radically changed the world. The healthcare system in Russia, as in other countries, is under incredible pressure, and Russian society likewise is tested by “social distancing” practices. The unceasing adaptation and mobilization of resources has become part of our everyday lives. The struggle against the epidemic continues to emphasize the priority of global social health. Accordingly, we must address questions recently raised by The Hastings Center in “What Values Should Guide Us?”. What will be the new ethical norm after the pandemic? What compromises will be in place between civil liberties and public health? Will such biomedical ethical themes concerning the priority of the patient’s interests, the principal of minimizing harm, the disclosure of medical errors, and balance of equality and justice receive new recognition? Should we equally weigh the basic ethical principles, and are they universal? The global context of the pandemic allowed us to see that the practice of applying bioethical principles varies greatly, and the development of these principles depends on the history and culture of each respective country.

The differences in fundamental ethical commitments and historical forces that shape cultures result in different priorities, goals, and understandings of appropriate restrictions on behavior. These gaps can be difficult to bridge in the context of international guideline development, and they pose special concerns where lack of coordination threatens public health or undermines the ability to pursue collaborative research to advance health interests. One of the greatest barriers to developing globally shared guidelines is a lack of understanding and appreciation of local history and culture. In reviewing global responses to the COVID-19 pandemic, we understand the importance of dialogue and information exchange between countries in extreme circumstances. Responses can drastically differ between countries, as evidenced in both European Union countries (Hirsch 2020) and China (Lei and Qiu 2020), even though the scientific conclusions and state measures may share some overlap. Russia is no exception. The struggle against the pandemic exposed the deep rift between the global bioethical discourse and Russia’s response to the pandemic. In the development of public health guidelines, we cannot simply replicate the experiences and responses of foreign countries.

Russia imposed “the regime of self-isolation,” which limited citizens’ mobility rights, as the main pandemic countermeasure (Stanovaya 2020a; 2020b); however, there is no such applicable legal term in Russian law. The Russian President called this “a days off regime,” meaning a vacation from work obligations. He did not declare a state of emergency or impose quarantine restrictions. Instead, the bulk of the responsibility for anti-pandemic countermeasures was placed on the regional governments. In our opinion, such decisions and shifting of responsibility can be ethically justified only if the measures are proportional to the severity of the epidemic, taken with no violation of individual freedom and rights, and transparent to the public. These requirements were not met: the state refused to offer financial aid to businesses or to the vulnerable population. Instead of supporting its citizens, the state imposed a series of administrative measures (i.e. penalties) that were aimed at punishing the healthy population for going out of their homes without a special digital code during the non-imposed quarantine. For those who were diagnosed with COVID-19 and their families, they were forced to use a social monitoring app that required sending selfies five times per day, even at night. These penalties increased social anxiety and mistrust.

While many have studied the collapse of the Soviet Union, few realize that Soviet policy and practice in healthcare is alive and has significant implications in Russia. Although the democratic state assumed the monopoly in the fight against the COVID-19 pandemic, it quickly returned to the patterns of Soviet policy in implementing public health strategies. In the mid-1990s The New York Times used the term ‘neo-soviet style of state governing’ to describe a pattern of returning to the Soviet Kremlin medical treatment practice and assumptions for responsibility within state leadership (Stanley 1995). The budget of this health bureaucracy, then and now, is secret. The current pandemic has brought about the return of several negative trends from the Soviet past such as ethics of silence, double thinking, state paternalism, and a culture of non-disclosure.

We will begin by sharing the meaning of these four key features of the Soviet legacy that influence medicine and healthcare. We then will highlight the implications of these commitments for medicine and bioethics within the context of the COVID-19 pandemic. We consider the history of Russian medicine and explore Soviet commandeering within health systems. We argue that by identifying pathways that respond to our history and culture, we can advance the development of bioethics in Russia by using robust analyses of healthcare and state practice during the COVID-19 pandemic.

Ethics of Silence, or Why Does Russia Not have Bioethics?

It is well-known that bioethics—as a research field—originated as part of the academic and social discourse in the United States. Although there are some research groups, independent researchers, and journalists working to study and implement bioethics in Russia, the country has not seen widespread academic development or widespread public discourse. Why does Russia lack organizations similar to the American Society of Bioethics and Humanities, The Hastings Center, the Kennedy Institute of Ethics, etc.? The answer is quite complicated (Stepanova 2019).

Until the late 1980s, bioethics was not represented in the Soviet academic discourse. This was, in many ways, due to the fact that it was a product of American academic culture (Callahan 1993). As the medical sociologists Fox and Swazey stated in their mid-1980s study, we should not suppose “that bioethics is a sufficiently neutral and universalistic term for it to be applied to medical morality in China or, for that matter, to medical ethical concern in whatever society or form it may now occur” (1984, 336–37). This perspective was critical of Professor Engelhardt’s material, published after the delegation of the US Kennedy Institute of Ethics returned from China (Engelhardt 1980). Sociologists described Professor Engelhardt’s approach as “cultural myopia”; according to them, Professor Engelhardt did not adequately appreciate the deep Western and American cultural influences on bioethics. These sociologists argued that he inappropriately considered bioethics as neutral and universal (Fox and Swazey 1984, 337). Sociologists emphasized that the term ‘bioethics’ was a neologism, which appeared primarily in American culture. In other cultures, its philosophical bases can be perceived as “acultural or transcultural,” which “can significantly limit its application in practice, allowing for the use of other terms” (337–38). In many ways, this is true for both Soviet and post-Soviet Russian development of medical ethics.

Perspectives within bioethical Soviet studies in the fields of Communist morality, medical ethics, and deontology differed radically from those that emerged within the United States (De George 1969; Tsaregorodtsev 1966; Petrovsky 1988). These differences are deeply intertwined within history and culture; differences are especially evident when we examine the issue of freedom. Soviet philosophy largely encompasses a determinist doctrine, which means that a person’s choice is an illusion, as it was determined by the interests of society (De George 1969, 35-38). Another important difference concerning Soviet ethics was noted by the Professor Graham in his Nature essay. He noted numerous attempts by Soviet philosophers to transfer the solution of complex problems to a future society, which would presumably be more just (Graham 1991). He agreed that this position allowed for neutrality in the struggle of conflicting concepts, but such abstracts proved to be of no use for those who were bound to make decisions in current society. In other words, this ethical model was not applicable. The problem was made more complex by a rather special understanding of the basic ethical categories. For example, freedom was not individual, but collective, which in turn complicated the perception of such categories as responsibility, wellbeing, duty, and consciousness—which were directly dependent on the understanding of freedom (De George 1969). Thus, the individual value of a human being was bound to the needs of society, and morality was an instrument of social control that guaranteed social stability. In the public discourse there was an “embryological perspective” of a person and the inner life of a human being, which were seen as “underdeveloped” and in the need of being “raised.”

The desire of the enlightened government to educate the “ignorant” people has deep historic roots, starting from the reign of Peter the Great. At that time, numerous disciplinary and oppressive campaigns were conducted under the guise of “enlightenment.” In the Soviet period, society was evaluated on an evolutionary scale, spanning from the primitive to the communist forms, which meant that there was no need to give a detailed analysis of its contemporary state. The ideas of constructing a new society, educating the new human being for the common socialist happiness, manifested its limitations as early as the 1950s, since this ideology could boast a purely humanitarian ideal for the future, but only offer limited guidance on how this would allow contemporary problems to be solved.

Relatedly, developments concerning a culture of silence share this intertwined history. The ethics of silence was shaped by the expansion of the “classified” zones and non-disclosure demands. In the Soviet Union, the term “state secret” received a maximally-broad interpretation, especially the context of the non-stop mobilization campaigns, carried out under pretense of war. Safeguarding “state secrets and showing discretion was the duty of every Soviet citizen” (Zelenov 2012, 147). Record keeping in Soviet institutions was also aimed at secrecy; indeed, entire departments were kept secret. In more open institutions, so-called “first departments” monitored the storage of state secrets.

The non-disclosure culture was enforced through institutions, whose employees internalized the non-disclosure norms, as well as through censorship and the state’s monopoly on mass media. As a result, Mikhailova describes the following:

Silence as a form of social protest behavior revealed its duplicity: under certain circumstances it allowed the individual to counter society’s oppressive machines, and to defend if not one’s life, then at least one’s honor. On the other hand, it provided the opportunity to sustain the fragile peace (even a questionable one), which was still preferable to the ‘good old fight,’ yet at the same time this very tendency aided the spread of lies, the formation of a pseudo-reality and the deepening of the anthropological crisis. (2011)

The “ethics of silence” and “non-disclosure culture” mechanisms, shaped in the Soviet Union, were supplemented by the phenomenon of duplicitous thinking. Soviet sociologist Yuri Levada actively used George Orwell’s formulation ‘doublethink’ to describe this practice (Orwell 1961). Levada also noted the following about late-Soviet society:

The doublethink dictatorship became total and unlimited: it was cemented that one must separate the sphere of social norms (to act, speak and think as you ‘were supposed to’), and the sphere of what was tolerated, which was basically dubbed as the ‘private’ life…The ‘minor’ and ‘major’ truths were locked together, struggling against one another, yet supplementing each other. (2006, 266)

In Levada’s opinion, post-Soviet society cemented the behavioral qualities of the Soviet period. In 2000, he called the post-Soviet person “sly”:

The sly person—on every level and in every essence of his or her existence – not only tolerates deceit, but is ready to be deceived, moreover—he or she has a need for self-delusion for reasons of the same (including psychological) self-preservation, for the overcoming of one’s internal split, for the justification of one’s own deceit. (2000, 20)

With the absence of strict barriers that would separate the proper and improper behavior, the dominant situation for post-Soviet society was not playing by the rules, but rather—playing with the rules.

The ideology of the totalitarian state, which routinely uses policies to impose state pressure on all spheres of life, also transformed the understanding of a doctor’s duty and medical ethics. This influence denied the essence of the physician’s mission and transformed the mission into a form of social work aimed at the benefit of the state, not individual interest. The late 1980s and early 1990s witnessed the appearance of first Western studies dedicated to the peculiar traits of the Soviet and post-Soviet healthcare systems (Rowland, and Telyukov 1991; Chazov 1992; Barr and Field 1996; Field 1995), especially medical ethics (Veatch 1989; Ryan 1990; Barr 1996).

In Soviet medicine, “medical privacy” received peculiar interpretations. The main ethical goal of the doctor was to aid in the creation of the “major” truth of the state. The strict paternalist model, the medical structure centralized on a pan-Soviet scale, and its moral obligation to ensure society’s healthcare (and not the healthcare of the individual patient) completely changed the term “medical privacy” throughout society. Policymakers did not protect the patient’s rights to confidentiality but rather strengthened the non-disclosure culture of the medical corporation. This naturally did not allow for the formation of bioethical institutions, as it was understood from a Western perspective. Still, academics were also interested in investigating the “second economy on an unofficial barter system” of healthcare (Barr 1996). This was a major part of the public consensus—underground payments to the doctors in underfinanced conditions and the low quality of the publicly free healthcare. This phenomenon is hard to understand, if one only depends on the official Marxist dogmas and Communist morality of the Soviet professions, which were supposed to be driven by the primacy of duty. For doctors, the expectation and acceptance of payment from a patient in exchange for medical services was officially considered bourgeois and unethical (Barr 1996, 38). Yet this also can be easily understood as a manifestation of the “doublethink” and the non-disclosure ethics in medicine.

Strict centralized control, the disregard for the specifics of regional healthcare, the priority of quantity over quality, the overall lack of resources, and lack of financing could not stimulate the doctors to improve their work. At this time, the average doctor’s salary equaled about 70% of the non-agricultural worker’s paycheck. These factors only led to an increase in mortality, a low life expectancy, and the public mistrust of the healthcare system (Rowland and Telyukov 1991). Further, independent professional associations of health care workers could not exist under the Soviet state. The state could not and did not evaluate the professional work of doctors. Soviet doctors, as state employees, were subject to disciplinary orders and could not fully control the field of their professional expertise, which was a necessity for their work. The social standing of doctors in USSR exhibited a “paradoxical combination of corporate powerlessness and bureaucratic power” (Field 1989).

In the post-Soviet landscape, and especially in Russia, the government—until recently —kept the Soviet organizational model for mass healthcare. The government began to gradually transfer the system into the sphere of “services” yet retained the paternalistic watch of the state over the medical institutions. It’s important to remember that by the 1980s, Soviet medicine was falling behind the healthcare levels of the developed countries. Researchers see the main reasons for this in the overbearing centralized management system of healthcare, the low levels of professional education, and insufficient funding (3.4% of USSR GDP in 1989, in comparison with the 11.4% in the United States) (Rowland and Telyukov 1991). As Dr. Rowland notes, “in theory, Soviet healthcare is a model of regional medical aid, which is based on local clinics. In reality, this system falls apart due to lack of finance, the indolence of centralized control, and lack of innovation” (Rowland and Telyukov 1991). The doctor’s clinical practice was not autonomous; the patient did not have the right to choose where and from whom he or she will receive medical aid. This, obviously, meant that there were no objective motivations for improving the quality of medical aid, and numerous services would only be available for an additional, informal payment. As The New York Times stated, “Communism may be dead…but its disparities and inefficiencies remain,” and “health care had never been one of the Soviet Union’s great successes….[D]octors were always relatively badly treated in the Soviet Union” (Erlanger 1992). The situation would not change for several years.

After 1991, Russia started developing the private medical care sector, which was more flexible but also expensive for population-based health needs. The last healthcare reform in Russia, which took place during 2015-2017, was driven by the logic of “optimizing” costs and raising the “economic efficiency” of the system. In Russia, the main direction of reform concerns the reduction and merger of clinics, the partial privatization of insurance, and in some cases, privatization of the actual delivery of services. In contrast, in the United States, the most important part of healthcare reform lies in the field of insurance, not in the actual delivery of healthcare services (Filatova and Schultz 2016). Russian policy changes have led to the bureaucratization of the system, a decrease in number of hospitals and hospitals’ enlargement and specialization, with a marked and forced decrease in numbers of doctors and nurses (Nurik 2015). Nurik notes the following figures from between 2005 and 2013:

The number of health facilities in rural areas fell by 75 percent from 8,249 to 2,085. That number includes a 95 percent drop in the number of district hospitals, from 2,631 to only 124, and a 65 percent decline in the number of local health clinics, from 7,404 to 2,561. (2015)

In 2014, a broad public campaign against the collapse of the Russian healthcare system was launched by the Deystvie Union, the Russian Confederation of Labour, the Pirogov doctors’ movement, the “Together for Decent Medicine” protest group, and other civil society organizations. This did not yield the desired results. Instead, with Russia’s huge territories and disproportionate population spread, the reduction or merger of hospitals partially led to the rise in inequality of people’s access to healthcare.

On one side, as Kleinert and Horton state in their editorial, “the health system itself is marred by an insufficient skill level of its too many doctors who are still underpaid and demotivated” (2017). On another, the Russian Constitution guarantees the right to health and free medicine in state hospitals for every citizen. But the scope of guarantees is not defined by law. The budgets for medical care are scattered: they are partly paid by the federal budget and partly by regional budgets. A citizen does not know who pays, when they pay, or for what. The population does not participate in financing public health care. Health resources are disintegrated, and their allocation cannot be considered equitable. Availability of health care depends on one’s location within the country and social status. As Sheiman and Shishkin (2010) noticed, an important part of the reforms should be raising the level of legal education in the field of healthcare. It is necessary to create conditions to facilitate patients’ choice of medical organizations on the basis of accessible and transparent information and ratings of clinics. This information might also include the results of assessing the quality of medical care based on patient’s opinions. It is necessary to specify what it means for the state to guarantee free medical care, to strengthen regulation of paid medical services, to make a serious revision of medical education on all levels.

The consequences of this healthcare reform became clear in light of the pandemic, which shed light on the most vulnerable groups and re-activated the ethics of silence. Professor V. Vlasov calls this “the continued misuse of health care for political purposes” (Vlasov 2017). For many years, the government used healthcare programs to solve demographic problems (e.g., suppressing access to abortions, increasing funding for in-vitro fertilization). Healthcare was a tool, aimed at the increase of manpower, instead of being an instrument focused on aiding sick people (Vlassov 2017).

L. Roshal, the chief physician in the National Institute of Emergency Children’s Surgery, recently confirmed that Russian healthcare was not ready for emergencies like COVID-19. According to him, a meeting took place almost a year ago on the preparedness of Russian healthcare to offer aid in various emergency situations. It was hosted by the All-Russian People’s Front, a civil initiative, with the participation of representatives from the Ministry of Defense, Ministry of Emergencies, the “Defense” Movement (Zaschita), the Ministry of Healthcare, the managers of the ambulance doctors’ union, and chief physicians of various clinics. The conclusion was extremely depressing: “We are not ready to provide aid to the country’s population.” Due to a combination of numerous state initiatives to “optimize” health are and decreases in total healthcare workers, Russia was primed to experience difficulties throughout a pandemic.

Moreover, this commentary also demonstrates another example of the non-disclosure culture: no one wants to bring healthcare reform failure to the public’s attention. The regime of “secrecy” (which demands silence) reemerged in Russian everyday life with the threat of COVID-19. Public discourse on responses to the pandemic focused on the high level of social mobilization and heroism, typical for the Soviet past and in tune with communist morality. Russians’ realities were penetrated by something that is directly connected with the ethics of silence and non-disclosure culture: The crash of Communism instilled hope that science would transform Soviet health care in the interests of humanity, but still, it serves mostly the ideology of the Russian State” (Vlasov 2017). The culture of non-disclosure persists in the neo-Soviet era.

Social Disparity and Culture of Non-Disclosure in COVID-19 Russia

The regime of “secrecy” came back into Russian reality with the threat of COVID-19, as part of the public discourse of mobilization that was a well-known part of Soviet morality accompanied with “the culture of non-disclosure.” According to the Blavatnik School of Government at Oxford University, the measures taken by the Russian government were among the strictest in the world, according to the global scale of state countermeasures to the coronavirus (2020).

The Russian National COVID Response Team was created on January 29, 2020. On January 31, Russia closed its border with China. Following that measure, self-isolation regimes and electronic passes were introduced. The government took unprecedented measures, initially stating that its care for its citizens was the prerogative. At the first stage, Russian society responsibly accepted the social isolation guidelines in spite of their numerous drawbacks. Yet the federal government refused to impose nationwide quarantine measures or even impose them on the large metropolitan areas. Responsibility for such measures was instead routed to the regional governments. Additionally, the state refused to offer financial aid to businesses or to vulnerable groups of the population. In the aftermath, the state continued to pursue the disciplinary-oppressive course, which was represented as an “educational” measure aimed at “irresponsible” citizens. Instead of supporting its citizens, the state imposed a series of administrative measures that were aimed at punishing the population for violating the non-imposed quarantine measures and for the spread of unverified information. The state also created a special procedure for registering and selling medicine, while maintaining limitations in trade and businesses.

The legal system has imposed strict measures in response to COVID-19. One of the specific measures was the Russian Supreme Court’s decision that forbade the discussion and spread of any coronavirus information under threat of criminal charges. Article 207.1 (“Public dissemination of knowingly false information about circumstances posing a threat to the life and safety of citizens”) was introduced into the Criminal Code on April 1, 2020. It focuses on filtering coronavirus distribution data. Accordingly, information concerning the pandemic that does not originate from official state channels is presupposed to be aimed at political and social destabilization.

Digital passes, isolation, and fines have also been imposed in Moscow vigorously. Regional authorities try to follow the capital’s example as best as they can. All of this was accompanied by the strengthening of social inequality—state officials of all levels, members of security services, journalists, and jurists were exempt from the restriction measures. The elder generation of Russian citizens characterized this situation as the imposition of “martial law.” Society’s perception of this time-period as a “time of war” allows us to analyze these events from the point of view of the history of Russian collective mentality . This approach allows us to see the “content plane” that lies beyond the “expression plane” of the social mindset (Ariès 1981, XIII–XVII). With the original cooperation of the population (who agreed to social distance and limit their movement), the level of the state’s communication with vulnerable people facing economic instability deteriorated to its usual forms—fines, bans, threats, and pressure. Under the conditions of the epidemic, the mental predisposition of almost all state officials becomes quite clear: the Russian president calls for social isolation, and thus it is unacceptable to say anything against social control. Following this idea, President Vladimir Putin signed the new federal law No. 123 on April 24, 2020:

On conducting an experiment to establish special regulation in order to create the necessary conditions for the development and implementation of artificial intelligence technologies in the subject of the Russian Federation—the city of federal significance Moscow.

This law amended Article 6 and 10 of the Federal Law “On Personal Data.” As a result, Russian citizens are facing a new ethical challenge to their rights to privacy; this is partially why the state’s actions are aimed at further enforcement of isolation. Nevertheless, the measures taken by the authorities in their fight against the coronavirus vary from region to region, as does the level of the pandemic’s spread (Volkov 2020).

In order to properly evaluate perception of the imposed restrictions, we must understand which measures will be repealed once the quarantine ends and which will remain permanently. For now, we can only say that only a minor percentage of the Russian population considers the state’s anti-COVID measures extreme. Here, we should examine Russians’ attitude towards similar restrictions: the law allowing security services to monitor private correspondence, the blocking of several foreign websites (including some universities), and punishment for “extremist” social media posts. These previous initiatives were actually met with support by a bulk of the population; however, public opinion on the matter was dominated by representatives of older generations and residents of rural regions. Both groups tend to traditionally see the state as the institution responsible for the safety and morality of the people. Younger, more educated, and socially active Russians and residents of major cities, on the contrary, were highly unhappy with these laws. They had a better understanding of the restrictions’ essence and “extrapolated” on themselves the possible punishments.

These contemporary state measures reinforce isolation measures. The lack of bioethics and a professional community of specialists, capable of articulating society’s interests who seek to balance individual freedom with social interests, has led to the restoration of the “ethics of silence.” This is verified by public opinion surveys. For example, Lev Gudkov, the director of the Levada Center notes that “over 60% of the population is neutral in their assessment of the President” (2020). Gudkov calls this the “base construction,” where this population concludes that “there is nothing we can do, so I will not say anything good or bad” (2020). In the post-Soviet period, Russian society went through a radical transformation and assumed a highly unstable structure. Post-Soviet Russia experienced several crises—e.g., 1998, 2000, 2014—with each one deepening the social and economic divide, creating new vulnerable groups in Russian society. Yet the problem of poverty, questions of inequality, or a search for solidarity did not become subjects of public discourse. Russian society exhibits a far greater level of income inequality than European and the majority of post-Socialist countries. The “middle class” is absent, as are the conditions that would allow for its formation, while the population is subject to a high mortality rate.

Meanwhile, individuals living in poverty were further marginalized. Poverty remained adamantly overlooked by Russian society. In 2014, sociologists marked the stigmatization of the poor; society would bestow them with highly negative characteristics (Mareeva and Tikhonova 2016). The concept of a two-level social inequality in modern Russia is applicable to healthcare access. Inequalities in health are not limited to inequalities in access to health services, however. The difference in the social status of patients creates different attitudes regarding health, reinforcing inequalities in maintaining the health of Russians. A high social status allows the patient to establish equal relations with the doctor and affects the degree of satisfaction they experience in contact with the doctor and treatment. Low social status limits the patient’s choice: they usually use the state medicine, not only because the low costs, but also because of prejudices in private medical services. The COVID-19 pandemic—aside from emphasizing the divide of the population of the large metropolitan areas with large and small towns and rural areas, intertwined with demographic factors such as age, education, and income—also brought into the open the crisis of public trust towards official medical institutions and doctors (the lack of transparency in medical statistics, malfunctioning tests, the cancellation of any medical treatment aside from COVID-19). The lack of professional associations and the political subjectivity of regional authorities leads to little legal accountability . With this in mind, it is noteworthy that the Moscow City Administration is actively promoting the values of transhumanism, that is, the improvement of a human being with digital technology and AI, through measures such as the “Smart City 2030” program and the new digital pass system testing that has been ongoing throughout the COVID-19 epidemic.

 In addition, there is a lack of accountability for the social, immunological, and psychological consequences for isolated people. Using their own clinical observations, several doctors have recently discussed the risks of prolonged isolation that directly challenge the currently imposed measures (Jalsevac 2020). However, information questioning the state’s responses will often be met with hostility on social media. The military mobilization of the health services allowed the state to go back to the comfortable and familiar forms of communication with society—a format of strength, stemming from paternalism and police control.

Healthcare Professionals During the COVID-19 Pandemic

During the epidemic, American medics have noted the moral suffering of doctors who are forced to make daily decisions on whom to help in the state of deficit. The United States’ medical community is troubled by the underestimation of psychological consequences of the doctors’ work during the COVID-19 pandemic. The current epidemic unexpectedly and radically destroyed our perceptions of the norms within medical practice, actualizing the need for transparency. The bioethics community agreed. They are certain that under the epidemic conditions, the main dilemma is the struggle between public healthcare ethics, oriented towards the just distribution of organic resources and social security, and the model of clinical ethics, oriented towards the individual patient’s wellbeing and interests. Are such statements equally applicable for all countries? What are the peculiar traits of the situation in Russia?

Russians have dedicated great attention to scrutinizing health professionals’ behaviors throughout the pandemic. On April 22, 2020, during the online conference “Ethical Dilemmas: Does the Crisis Write Everything Off?” the chief physician of one of Moscow’s largest hospitals—Alexei Svet—characterized the current situation as a “time of elastic morals.” Answering a question on what is to come after the pandemic, he stated, “Of course they will find those ‘responsible’ for the situation, who did not do enough to counter the epidemic…and it will be health workers.…They did their job poorly and did not do enough to protect us.” In other words, he expects medical professionals to be made into scapegoats for the shortcomings in the system, regardless of the state’s role in its weakening.

The main measure that impacted health professionals employed through the public health services was the re-orientation or closure of the state hospitals. From the moment the epidemic broke out in Russia and self-isolation was imposed, hospitals were directed to treat COVID-19 patients; these regional hospitals were charged with responsibility for monitoring COVID-19. Major state clinics focusing on other specialties or clinical practices were closed. Doctors were forbidden to have multiple practices (in two or more clinics); meanwhile, methods of calculating the mortality and infection rates were constantly being updated. For example, in Moscow hospital No. 57 with a specific department dedicated to treatment of pulmonology and cystic fibrosis for adults (the only one for the whole country) was closed. Patients were discharged without any support. During April–May 2020, in 11 regions (out of 85 Russian Federal units), their regional health ministers resigned or were dismissed. These measures raise many ethical issues.

The imposition of listed measures was subject to severe logistical errors, caused by the instability of the decisions made, the extraordinary transfer of financial resources, the constantly changing demands of the regional governments to the hospital administrations, and the threat of legal consequences for the spread of the infections. Under these circumstances, the social inequality of the health workers became clearer than ever. Professional medical vulnerabilities were exposed, since now the entire industry was quietly “mobilized” by the state. In our essay, we feel that it is our responsibility to state that in the current political situation, we need to expand the vulnerable categories of citizens (namely, the elderly, homeless, prisoners, children, and solitary people) to add doctors to the list. The epidemic exposed new forms of conflict on several levels: between state and private medicine (financing); between the hospitals fully and partially equipped for COVID-19; and between doctors of various specializations because of financial inequality, since the payment for treating COVID-19 patients is higher. Many private clinics retain the ability of continuing their practice unrelated to COVID-19. The salary levels in private clinics are significantly higher than in state clinics. Differences in doctors’ everyday life are also clear; for example, doctors working with COVID-19 receive hotel accommodations. Meanwhile, private clinics also retain the right to receive patients with either state insurance, with further state compensation, as well as privately for market-price payment.

Disparities in protection and communication exist between state hospitals and partially-equipped clinics. State staffs of the hospitals and emergency rooms that are dealing exclusively with COVID-19 patients were informed regarding the high levels of contamination. They were insured, and the information on the doctors contracting the disease is not being hidden. But within the partially-equipped clinics, doctors did not receive adequate self-protection kits against COVID-19, and an intense conflict between doctors and the hospital administrations is on the rise. For example, in Moscow’s 23rd Hospital, COVID-19 patients entered through several channels and found themselves in various treatment departments. Despite the fact that a separate block of the hospital was being prepared for COVID-19 patients, a significant number of young doctors contracted the virus. The hospital administration pressured its staffers not to take medical leave, and this pressure in part increased the number of virus-stricken doctors. Nevertheless, the doctors were not registered as “COVID-19 workers”: the workers did not receive security guarantees or financial compensation for their risks.

Infected doctors must continue to work for two reasons: to sustain “good” statistics, as information on their illness can hurt the hospital’s chief physician due to fines or penalties, and out of fear of being fired for the spreading the information in question. Moreover, doctors of different specializations often find themselves under the conditions of growing financial inequality, and the lack of inter-department cooperation protocols further undermine stability. Payment for treatment of COVID-infected patients is higher than for the treatment of other patients facing conditions like a cold or pneumonia. Nevertheless, not all doctors working with these patients receive adequate financial compensation, and doctors in state clinics are forbidden to continue any other medical practice.

Because of the low level of public trust in Russia’s health system, we now also face an incredibly low level of trust when it comes to doctors. This is evidenced by the growing number of lawsuits against doctors who supposedly infected their patients. In Russia, COVID-19 activated a culture of non-disclosure, contrary to the perspective of bioethics that Dan Callahan, founder of The Hastings Center, defines as foundational and conversational. According to Callahan, “bioethics has to ask hard, even nasty questions.…It shouldn’t be troublesome just for the sake of being troublesome, but because the very nature of ethics requires that it ask hard questions, they always bring trouble” (1993). In Russia, we see the rise of the “ethics of silence” and the dominance of the non-disclosure culture. The main problem for the doctor is the “pressure triangle”: the hospital administration; the threat of criminal charges from the state; and displeased patients and their relatives who may threaten lawsuits. In Russia, the culture of non-disclosure and the lack of a proper structure for clinical bioethics led to doctors, as a social group, becoming even more vulnerable during this pandemic.

We argue that there are three main epidemic-aggravated barriers in modern medicine in Russia. First, medical errors are a part of criminal law and therefore never should be acknowledged. It means that keeping all medical information as a secret is a part of doctor’s corporate code of behavior, a sort of life-keeping model. Second, we do not generally withdraw ventilators because it is considered euthanasia, which is forbidden.[1] Third, we have a different culturally-rooted meaning of the basic bioethical concepts. For example, among physicians we may find the point of view that medical ethics is aimed at avoiding patient complaints, and it is not connected to the idea of respect of patient’s autonomy. The last commitment led to the practice where clinical bioethics in the ICU is within a psychiatrist’s scope of responsibility. In the ICU, typically no one will ask a conscious patient about his agreement to use ventilators. Usually, physicians consider this treatment as a part of “life-saving” behavior. If a patient is against ventilators, according to the law, he may sign a refusal of this procedure, but the ICU team may ask a psychiatrist to check the patient. When this consultation is finished and the psychiatrist diagnoses the patient with depression, the patient will be intubated and prescribed antidepressants, using the psychiatrist’s permission. Based on the history of medicine in Russia, we believe that these barriers are rooted in the fear that physicians may be put in prison if a patient dies.

Additionally, three important factors contribute to viewing physicians as a vulnerable group in Russia: lack of personal protective equipment; violations of the labor rights of doctors (e.g., labor contracts for special working conditions are not provided and signed); and the fear of not receiving payments after dismissal. Today, the position of a doctor in Russia differs little from that of a doctor in the USSR and in Russia in the 1990s. Despite ongoing reforms, the social status of the doctor has not changed (Saks 2015). There were no conditions for the emergence of an independent union of healthcare professionals or an independent expert association of doctors able to assert their rights and focus attention on medical ethics. Additionally, these physicians face significant moral pressure. Doctors may fear the inability to help everyone, and they may feel pressure from extreme work exhaustion and lack of equipment. Lastly, they may have inadequate information and fear legal consequences at every turn; pressure also stems within the system from chief physicians, who can fire them for refusing to follow oral orders that violate the law. All of these factors force us to think about the high vulnerability level of doctors both as a professional and social group. The factors challenge us to speedily introduce clinical bioethics practices within Russian hospitals. This introduction will allow for significant relief for physicians and nurses throughout all levels of healthcare.

CONCLUSION

The impossibility of consolidating our panic-stricken society, the activation of Soviet patterns, the absence of joint collaboration between doctors, and the lack of bioethics specialists—these factors led to the current social tension and conflict during the pandemic. Undoubtedly, it would be fair to say that public health ethics is in permanent conflict with clinical ethics. However, in Russia—with its notable lack of a civil society and respect of human rights—this conflict assumes totally different forms. Although self-isolation, quarantine, and digital pass measures have been put into practice globally, these measures, in Russia, provide a unique opportunity for tightening state command. These measures resurrect patterns from the Soviet-era control and discipline but with newly equipped unique IT technologies. The easy introduction of the ethics of silence into public discourse was possible due to the “forms of secrecy” that have been gradually imposed since the mid-2000s. These forms of secrecy are now gaining in massive scale because of the pandemic. Moreover, the general “wartime” discourse has minimized the values of individual rights from the public mind, quietly bringing to life the Soviet ideals of duty and state’s monopoly on differentiating the population’s rights to access resources. In 2020, we definitively see that Western bioethics is absent in Russian practice.

Modern Russia clearly exhibits the old and well-known conflict between the healthcare system on one end, which remains largely state-controlled and paternalistic, and the professional medical community on the other. The independence of the latter is fully subsumed into the Soviet concept of medical deontology. Duty is seen as a level of socially restricting freedom of action and the base for moral responsibility in a model that is maximally-far from reality (with its ban on defending individual, personal interests). The healthcare professional received the status of state employees in wartime, without the rights to violate the orders and regulations or to oppose their superior. Just like 30 years ago, the Russian healthcare system does not account for the doctors’ independent professional practice, where a physician has the right to make his or her own decisions in various circumstances. Medicine became the “safeguard” of Soviet ethics of professional duty, professional duty having the connotation that “duty as well as the greater good is the goal,” both of which are determined by the state.

Simultaneously, the state began operating as the arbiter that enacts social control but does not dictate responsibilities; instead, it limits social interaction and communication. With the absence of bioethics, doctors found themselves in a very vulnerable position: they are forced to abide by the epidemic’s behavioral norms, imposed by the authorities. At the same time, the doctors are considered guilty for failing to fight the virus. The medical vulnerability of doctors is also evident, because of the high-infection rate among them and the lack of information on the subject (which merely proves the vulnerability of their position). The facts we examined do not give us any ground to believe that there is currently a bioethical discourse or a public dialogue aimed at social solidarity, which is seen in the United States, where bioethicists and healthcare leaders are looking for a joint solution to the problem. State officials in Russia, having taken on the external forms and terms of the WHO, filled them with Soviet instructions—leaving the doctors as the “guilty” and vulnerable group.

In Russia, people often discuss the traditions of the national medical ethics and deontology. Yet the controversies and memory wars surrounding the social history of the last century do not provide much hope for the monolithic perception of this phenomenon and its national exclusiveness. The fight against the epidemic uncovered the discourse divide in social meaning and bioethical projections between the Russian public healthcare practice within its clinics and practices globally. Currently, there is a risk that decisions will be made for expedience by separate agents, bypassing normal routes of consideration. Under these circumstances, we depend on the ties and interactions within the global bioethics community, striving for the swift development of an institution responsible for “clinical bioethics.” This will allow us to both provide the transparency in the field of medical aid and defend the interests of both doctors and patients.

REFERENCES

Ariès, Philippe. 1981. The Hour of Our Death. Translated by Helen Weaver. New York: Knopf.

Barr, Donald, and Mark Field. 1996. “The Current State of Health Care in the Former Soviet Union: Implications for Health Care Policy and Reform.” Public Health Policy Forum 86 (3): 307–12.

Barr, Donald. 1996. “The Ethics of Soviet Medical Practice: Behaviours and Attitudes of Physicians in Soviet Estonia.” Journal of Medical Ethics 22: 33–40.

–––––– 1995. “The Professional Structure of Soviet Medical Care.” The American Journal of Public Health 85: 373–78.

Blavatnik School of Government. 2020. “Coronavirus Government Response Tracker.” Accessed May 13, 2020. https://www.bsg.ox.ac.uk/research/research-projects/coronavirus-government-response-tracker.

Callahan, Daniel. 1993. “Why America Accepted Bioethics?” The Hastings Center Report 23 (6): S8+.

Chazov, Yevgenii. 1992. Zdorov’e i Vlast: Vospominaniya “Kremlevskogo vracha” [Health and Power: Remembrance of a “Kremlin Physician”]. Moscow: Izdaltel’stvo Novosti.

De George, Richard Т. 1969. Soviet Ethics and Morality. Ann Arbor: University of Michigan Press.

Engelhardt, H. Tristram, Jr. 1980. “Bioethics in the People’s Republic of China.” The Hastings Center Report 10: 7–10.

Erlanger, Steven. 1992. “Medical Care in Russia Seems Near a Collapse.” The New York Times, May 9. Accessed May 13, 2020. https://www.nytimes.com/1992/05/09/world/medical-care-in-russia-seems-near-a-collapse.html.

Field, Mark. 1989. “The Position of the Soviet Physician: The Bureaucratic Professional.” The Milbank Quarterly 66 (2): 182–201.

Filatova, Olga, and Schultz, David. 2016. “Health Care Reform in the United States and the Russian Federation: 1990-2015.” Public Administration Research 5(2): 31–41.

Fox, Renee, and Swazey, Judith. 1984. “Medical Morality Is Not Bioethics — Medical Ethics in China and the United States.” Perspectives in Biology and Medicine, 27 (3): 336–60.

Graham, Loren. 1991. “New Hopes, Old Doubts.” Nature 350: 527.

Gudkov, Lev. 2020. “Approval of Institutions of Power and Trust in Politics.” Levada Center May 6. Accessed May 13, 2020. https://www.levada.ru/2020/05/06/odobrenie-institutov-vlasti-i-doverie-politikam/.

Hirsch, Cornelius. 2020. “Europe’s Coronavirus Lockdown Measures Compared. Ways of Enforcing Social Distancing from Country to Country.” Politico, March 31. Accessed April 8, 2020. https://www.politico.eu/article/europes-coronavirus-lockdown-measures-compared/.

Jalsevac, Steve. 2020.“Two California Doctors May Start Revolution with Calm Questioning of Extreme Measures.Life Site News, April 24. Accessed May 13, 2020. https://www.lifesitenews.com/blogs/two-california-emergency-room-covid-doctors-may-start-a-revolution-with-calm-science-data-based-press-conference-questioning-of-extreme-measures?fbclid=IwAR3goYB18ANeVBSTgptiTE3oWmU-kKqXde4gwipxg7TW6nSu0ZZcAJFWf6U.

Kleinert, Sabine, and Horton, Richard. 2017. “Health of Russian People after 100 Years of Turbulent History.” The Lancet 390 (10102): 1569–70.

Lei, Ruipeng, and Qiu, Renzong. 2020. “Report from China: Ethical Issues to the Response to the Coronavirus.” Bioethics Forum Essay from the Hastings Center. January 31. Accessed May 13, 2020. https://www.thehastingscenter.org/report-from-china-ethical-questions-on-the-response-to-the-coronavirus/.

Levada, Yurii. 2006. Looking for a Person: Sociological Essays, 2000–2005. Мoscow: Novoe Izdatel’stvo. (In Russ.).

––––––– 2000. “Sly Man: Doublethinking in Russian.” Monitoring of Public Opinion: Economic and Social Changes Journal (Public Opinion Monitoring) 1 (45): 19–27. (In Russ.).

Mareeva, Svetlana, and Tikhonova, Natalya. 2016. “Poverty and Social Inequalities in Russia in the Public Mind.” World of Russia: Sociology, Ethnology 25 (2): 37–67.

Mikhailova, Marina. 2011. Aesthetics of Silence: Silence as an Apophatic Form of Spiritual Experience. Moscow: Nikeya. Accessed April 12, 2020. (In Russ.) http://archive.taday.ru/text/1771845.html

Narskaya, Natalya. 2014. “Health and Social Inequality in the Russian Federation.” Bulletin of the South Ural State University. Series: Social Sciences and Humanities 14 (1): 97–99.

Nurik, Alexander. 2015. “Doctors and Patients Battle to Resuscitate Russia’s Dying Healthcare System.” Equal Times, October 5. Accessed May 13, 2020. https://www.equaltimes.org/doctors-and-patients-battle-to?lang=en&fbclid=IwAR3U5LakEdsW72J9D-1i_Fw7V1J2sLbfLVq5jgMCysI9H176cBWtFhld5zg#.XrfWtEQzY_V.

Orwell, George. 1961. 1984. New York: Signet Classic.

Petrovsky, Boris. 1988. “Deontology as One of the Most Important Elements of Education in Medicine.” In Deontology in Medicine, Volume 1, edited by Boris Petrovsky, 9–73. Moscow: Medicine. (In Russ.).

Rowland, Diane, and Telyukov, Alexandre. 1991. “Soviet Health Care from Two Perspectives.” Health Affairs 10 (3): 72–86.

Ryan, Michael. 1990. Doctors and the State in the Soviet Union. New York: St Martin’s Press.

Sheiman, Igor, and Shishkin, Sergei. 2010. “Russian Health Care. New Challenges and New Objectives.” Problems of Economic Transition 52 (12): 4–49.

Stanley, Alessandra. 1995. “Russia’s New Rulers Govern, And Live, in Neo-Soviet Style.” The New York Times, May 23. Accessed May 10, 2020. https://www.nytimes.com/1995/05/23/world/russia-s-new-rulers-govern-and-live-in-neo-soviet-style.html.

Stanovaya, Tatiana. 2020a. “Russia’s Leaders Are Self-Isolating from Their People.” Carnegie Moscow Center, April 7. Accessed May 13, 2020. https://carnegie.ru/commentary/81489.

–––––– 2020b. “Viral complication. What awaits the Russian regime after quarantine?” Carnegie Moscow Center May, 13. Accessed May 14, 2020. https://carnegie.ru/commentary/81782

Stepanova, Elena. 2019. “Competing Moral Discourses in Russia: Soviet Legacy and Post-Soviet Controversies.” Politics, Religion, and Ideology 20 (3): 340–60.

Svet, Alexei, panel interview. “Этические дилеммы: кризис все спишет? Антихрупкость” [“Ethical Dilemmas: Does the Crisis Write Everything Off?”], Skolkovoschool YouTube Channel, April 22, 2020. https://www.youtube.com/watch?v=BKIy-GjUbz4 (In Russ.)

Tsaregorodtsev, Gennadiy. 1966. Dialectical Materialism and Medicine. Moscow: Medicine. (In Russ.)

Veatch, Robert. 1989. “Medical Ethics in the Soviet Union.” The Hastings Center Report 19 (2): 11–14.

Vlassov, Vasilii. 2017. “Russian Medicine: Trying to Catch up on Scientific Evidence and Human Values.” The Lancet 390: 1619–20.

Volkov, Denis. 2020. “Impact on the Creative Class: Why a Pandemic Will Lead to a Drop in Power Ratings.” Forbes (Russia), April 24. Accessed May 13, 2020. https://www.forbes.ru/obshchestvo/398943-udar-po-kreativnomu-klassu-pochemu-pandemiya-privedet-k-padeniyu-reytingov-vlasti?utm_source=facebook&utm_medium=social&utm_campaign=obschestvennye-nastroeniya-v-krizis-obychno&fbclid=IwAR3fKy3fSj6-gOBfOpY1LHdo5Edi7xvd4y-2NyWwaVPhCYB-W3xZ69q67TY.

Zelenov, Michail. 2012. “Military and State Secret in RSFSR and USSR, and Its Legal Support (1917–1991 гг.)” Leningrad Law Journal 1: 143–59. (In Russ.).


[1] Federal law 323, Article 45: “Medical workers are prohibited from carrying out euthanasia, that is, accelerating, at the request of the patient, his death by any action (inaction) or means, including the termination of artificial measures to maintain the patient’s life.”

Special Issue

Structural Stigma, Legal Epidemiology, and COVID-19: The Ethical Imperative to Act Upstream

Daniel S. Goldberg

[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]

ABSTRACT. The primary claim of this paper is that COVID-19 stigma must be understood as a structural phenomenon. Doing so will inform the interventions we select and prioritize for the amelioration of such stigma, which is an ethical priority. Thinking about stigma as a macrosocial determinant of health driven by structural factors suggests that downstream remedies are unlikely to be effective in significantly reducing stigma. This paper develops and defends this claim, setting up a recommendation to use a “bundle” of legal and policy levers at meso- and macro- levels to reduce the adverse and inequitable impact of COVID-19 stigma. In Section II, this commentary offers a basic account of the concept of stigma in general, the justification for conceptualizing it as a structural phenomenon, and some of the basic advantages of doing so. Section III moves on to frame infectious and communicable disease stigma in Western history not only as a way of demonstrating its structural features, but also to highlight the use of laws and policies as levers for public health change. Section IV urges explicit adoption of insights and methods from legal epidemiology and offers examples of specific legal and policy recommendations for addressing these stigmas. Section V concludes.

I. INTRODUCTION

The primary claim of this paper is that COVID-19 stigma must be understood as a structural phenomenon. Doing so will inform the interventions we select and prioritize for the amelioration of such stigma. Thinking about stigma as a macrosocial determinant of health driven by structural factors suggests that downstream remedies are unlikely to be effective in significantly reducing stigma. This paper develops and defends this claim, setting up a recommendation to use a “bundle” of legal and policy levers at meso- and macro- levels to reduce the adverse and inequitable impact of COVID-19 stigma.   

Historians of public health have long pointed out that outbreaks of communicable disease track social fault lines (Rosenberg 1992; 2009; Tomes 1999; Leavitt 1997; Kraut 1994). Epidemics illuminate stratifications, particularly among axes of power and social capital. Unsurprisingly, these demarcations often seem to intensify preexisting stigmas against marginalized and disadvantaged communities. Why outbreaks of communicable disease such as the COVID-19 pandemic seem to intensify preexisting stigmas so reliably is an important question this paper will explore. Nevertheless, there is little dispute that such stigmas are pernicious and virtually any ethic worth the name will provide a basis for the remediation of a pandemic- or epidemic-related stigma.

Yet there is something of a puzzle in this. Stigma is unlike most ethical quandaries in applied ethics, for it is generally not a social phenomenon on which reasonable people of good conscience differ. It is rare for a person to explicitly “stand up for stigma.” And yet all evidence suggests that it is a painfully common social experience, especially in encounters with health professionals. How can we explain this? Moreover, while the pressing question is obviously ‘how can we remediate stigma,’ an insufficient or shoddy conceptual grasp of stigma will lead to inadequate and ineffective interventions (Goldberg 2017).

The stigma that has followed the COVID-19 pandemic has thus far proven no exception to the history of epidemic-related stigma. Racial animus has tracked COVID-19 in virtually every society that has experienced outbreaks. Some of this animus has appeared as explicit, person-centered invidious racism. However, structural or institutionalized racism is also readily apparent in the devastating inequalities in COVID-19 prevalence, incidence, and severity. Perhaps unsurprisingly in a society “stamped from the beginning” with deeply entrenched racism (Kendi 2016), these inequalities have arguably been most apparent in the US.

In Section II, this commentary offers a basic account of the concept of stigma in general, the justification for conceptualizing it as a structural phenomenon, and some of the basic advantages of doing so. Section III moves on to frame infectious disease stigma in Western history not only as a way of demonstrating its structural features, but also to highlight the use of laws and policies as levers for public health change. Section IV offers examples of specific legal and policy recommendations for addressing these stigmas. Section V concludes.

II. STIGMA AS A STRUCTURAL PHENOMENON[1]

Most people experience health and disease stigma in an intersubjective context. Common sources of such stigma include public health and healthcare encounters, both in and out of formal clinical contexts. (The majority of healthcare work in the US occurs in informal and family caregiving settings, and family caregivers are unfortunately also active sources of health stigma.) Because the experience of stigma typically occurs in “local moral worlds,” this gives rise to the idea that stigma is fundamentally a product of these micro-level encounters. This is an illusion, albeit an understandable one. Stigma is a function of macrosocial, upstream factors. Both the concept and the empirical evidence of stigma support this claim.

For convenience, Link and Phelan’s (2014) five-component conceptual model of stigma can be distilled into two main aspects (without doing too much violence to the model): Difference + Deviance. Under the Difference phase, an ingroup marks an outgroup as different on the basis of a shared demographic characteristic. This branding is necessary but not sufficient to complete the stigma process. Instead, the ingroup must move on to judge the outgroup as deviant or inferior on the basis of that identifiable demographic characteristic (the Deviance phase).

While this account oversimplifies the process of stigma, it nevertheless generates several important points. First, while in theory it is possible to “arrest the stigma train” by preventing ascriptions of Deviance, the history of disease stigma in the West makes clear that, especially in cases of infectious disease, marking of Difference is inevitably followed by ascriptions of Deviance. That is, when we mark out a group as Different on the basis of a shared demographic characteristic, it is typically only a matter of time before we begin to ascribe Deviance to the outgroup on the basis of that characteristic. Hence, for example, the proposals to extend so-called immunity certificates, passports, or licenses to people who have COVID-19 antibodies on serological testing should trigger heightened normative scrutiny (Greely 2020; Kofler and Baylis 2020; Persad and Emanuel 2020), as by definition they mark out a group of people as different and overtly diminish their social status as a result. It does not follow that such proposals are ethically improper from the outset, but rather that given the immense harms that flow from linking social benefits and status to disease state, we should proceed with extreme caution in intentionally instantiating such processes in law and social policy.

Second, stigma is a function of social power (Phelan et al. 2014). The conceptual model demonstrates this: for an ingroup to make an outgroup as Different, the ingroup must be “in,” while the outgroup must be “out.” Social life is complicated, and most people belong to both ingroups and outgroups (and there are outgroups within ingroups and vice versa). But what happens when a person has the misfortune of belonging to many more outgroups than ingroups? On the basis of the model alone, we would predict that such a person is both much more likely to experience stigma, and to have the adverse consequences of that stigma—what Link and Phelan refer to as “stigma power” (2014)—be more severe.

There are two metaphors that can further illuminate what it means to take stigma as a structural phenomenon. The first is the idea of a script. Scripts are essentially habituated or routinized behaviors that are commonly deployed in various social contexts (Buchbinder et al. 2016; Gioia and Poole 1984). For example, in the US, the end of a meal at a restaurant commonly triggers the script of ‘asking for the check.’ Scripts are neither fate nor destiny. They are nevertheless dominant schemata that strongly influence behavior in certain contexts and in response to certain cues.

As noted above, stigma often does not generate significant moral disagreement. How many health workers wake up in the morning and decide that their day will be complete once they have effectively stigmatized six to eight people? And yet stigma is distressingly common in health- and disease- related contexts. We cannot make sense of this commonality of stigma absent—and sometimes even despite—any intentions to stigmatize people unless we expressly conceive of it as structural. Because stigma is shaped by social power and unequal access to it, social structures and institutions sustain and fuel the scripts through which stigmatizing behavior is enacted. Such structures can be physical, as in the case of the built environment—e.g., clinical spaces with chairs, tables, or gurneys that cannot accommodate fat people. They can also script interactions beyond the built environment, such as clinical intake forms that feature two boxes for gender identity. In the latter case, we could assume arguendo that the empowered parties who create and use the form do not explicitly hate gender nonbinary, gender-fluid, or genderqueer people. Rather, their behavior is scripted by upstream social structures that render such communities invisible; but like most structural phenomena, the adverse impact on marginalized and oppressed social groups persists in the absence of invidious intent.

The second metaphor that may be useful here is the idea of the background and set in a play, drama, or musical. Stagecraft professionals know that the background has an enormous effect on the construction of meaning in any theatrical performance. How the audience interprets dialogue and character, the mood, the tone, etc., are heavily influenced by the background and the set. However, the audience becomes so engrossed in the spectacle of the performance, often enough it ceases to consciously perceive the background (unless the audience expressly trains their perception on it). The rub, of course, is that the background and set continue to exert significant influence on the audience’s experience even when not explicitly perceived.

Disease stigma is often hegemonic (Burris, Kawachi, and Sarat 2002). It is frequently part of the social backdrop, invisible and perceived as natural and sensible, especially when inscribed and reified in important social institutions. In a 1993 paper, Australian healthcare workers reported that they thought people with type 2 diabetes experienced relatively little stigma, ranking it among the four lowest sources of disease stigma (Westbrook, Legge, and Pennay 1993). Similarly, in a 2013 review, people who did not live with the illness generally did not perceive it as an active nexus for stigma (Schabert et al. 2013). However, in a follow-up paper, researchers asked Australians who do live with type 2 diabetes about their lived experiences of stigma. Of the participants, 84% reported experiencing diabetes-related stigma.

Stigma is structural. It is a creature of social power, and is driven by the same upstream, deeply-rooted factors that determine distributions of power and social capital. Because stigma is fundamentally connected to power, the social spaces in which stigma occurs typically feature a number of intersecting stigmas. In few contexts is this as apparent as in the case of epidemic disease. The history of epidemic and pandemic disease shows how prominent stigmas tracking race, alienage, and disability are especially common in the West. In fact, the explicit stigma directed against Asian-Americans in the US during the COVID-19 pandemic has a close precedent over a century earlier, in San Francisco.

III. PLAGUE AND PREJUDCIE IN EARLY TWENTIETH-CENTURY SAN FRANCISCO

Outbreaks of infectious disease track existing social prejudices. While this is unsurprising, it does underscore the benefits of conceptualizing stigma as rooted in the same factors that drive networks of power and capital in society. Perhaps most relevant to the contemporary COVID-19 pandemic are two outbreaks of bubonic plague that occurred in San Francisco in 1900 and 1907, respectively (Risse 2012; Shah 2001; McClain 1988; Kalisch 1972). Anti-Asian racism in the US obviously antedated the plague outbreaks; infectious disease stigma typically amplifies various preexisting stigmas. Joanna Trauner (1978) classifies six forms that virulent anti-Asian racism of the last quarter of the nineteenth century typically followed: Economic, Cultural, Assimilationist, Explicitly racist (white homogeneity), Biological, and Medical.

White Americans expressed economic anxieties that East Asians would take their jobs. They denigrated the traditions of East Asian peoples, declaring their cultures less civilized and more primitive than that of White Americans. Americans doubted that East Asian immigrants would ‘properly’ assimilate into dominant culture, and sometimes expressed overtly racialized concerns that East Asian immigrants would dilute the (mythical) White homogeneity of the US. Over the long nineteenth century, public health activities centered on municipal boards of health expanded in scope (Warner and Tighe 2001; Duffy 1992). This increased authority converged with the increasing organization and professionalization of allopathic medicine (Starr 1982). The language and augmented social, legal, and political authority of medical and public health officials created an atmosphere in which physicians and public health leaders issued bromides against Chinese-Americans based on ideas of inferior biology—that because they were of less hardy ‘stock’ than White Americans, they were more susceptible to illness and disease. The increasing influence of scientific racism and American eugenics also shaped some of these biological arguments. Finally, even those who doubted the merits of the biological arguments often suggested that the particular conditions in which East Asian immigrants lived made them both more susceptible to disease and more likely to spread it. While this last claim can form the basis of a structural account of the effects of deprivation and racism, the “medical” argument was more commonly used to suggest East Asian communities and people were responsible for their living conditions.[2]

One critical idea that has significant implications for COVID-19 stigma is that racialized stigmas about infectious disease easily crossed causal theories during this time period. In the middle decades of the nineteenth century, the miasma theory still dominated causal attributions of infectious disease. Thus, contemporaries spoke of the “foul and disgusting vapors in Chinatown” and referred to it as a “laboratory of infections” (Trauner 1978). By the late 1890s and into the first decade of the twentieth century, the germ theory of disease had taken sufficient hold among physicians and public health officials. Yet racism and racialized ideas of plague and infectious disease easily crossed these different causal theories. This fact is unsurprising given that stigma is fundamentally structural. That is, there is almost nothing in the structural model of stigma that connects the existence of health and disease stigma to scientific and health illiteracy. Stigma is not even mostly a function of ignorance. The godfather of stigma studies, Erving Goffman, observed that people who live close together for centuries can know each other intimately and nourish mutual hatred and stigmatization (1963, 63). Historian Andrea Patterson (2009) has ably documented how advances in microbiology in the Progressive Era were easily assimilated into existing racisms in the Jim Crow South. Thus, the evidence that familiarity or technical understanding is an enduring, robust anti-stigma intervention is weak. Similarly, while there may be good independent reasons to educate people on the scientific and epidemiologic facts regarding COVID-19, there is little reason to mark such education as an effective anti-stigma remedy. Stigma is a creature of social power. Ignorance may in some circumstances exacerbate its prevalence and impact, but it is a serious conceptual mistake to think that remediation of such ignorance is a promising pathway to ameliorating COVID-19 stigma. This argument reinforces a point made earlier: If we do not understand the concept of stigma the interventions we design and prioritize to ameliorate it will almost certainly be less or even in- effective.

In 1880, well before plague struck San Francisco, the municipal health board declared the entire neighborhood of Chinatown a public nuisance (Risse 2012). Public health law scholars have argued that nuisance law can be a powerful form of public health governance (Gostin and Wiley 2016), as well as one that can be used to enact and intensify racial stigma (Godsil 2004). Indeed, laws regulating space and geography, such as housing, provide an effective and horrifying example of the ways in which racism structures power and resources against African-Americans in the US—with devastating health consequences (Osypuk and Acevedo-Garcia 2010; Bolin, Grineski, and Collins 2005). In 1896, the health board enacted a maritime quarantine against all Chinese and Japanese passengers. On March 6, 1900, an autopsy confirmed bubonic plague as the cause of death of a Chinese-American man.

The very next day, the health board drew a sanitary cordon around Chinatown, targeting about ten to fifteen thousand people inside its boundaries. Officials began to cordon off the neighborhood with barbed wire. Further details of this cordon, as well as the plague outbreaks of 1900 and 1907, are critical, and are covered in a rich and compelling historiography (Risse 2012; Shah 2001; McClain 1988; Kalisch 1972). For purposes of this commentary, it is especially important to note how public health law easily mediates preexisting stigma and racism (Burris 2002). Indeed, given the fact that law and social policy are more upstream social structures, it would be shocking indeed if they did not instantiate such stigmas (Goldberg 2017; Burris 2002). On March 22, 1900, the health board announced that (1) Chinatown was infected with plague, (2) Chinese people were concealing the scope of the disease, and (3) the media was suppressing news of the plague. The second and third of these claims should feel depressingly familiar to contemporary observers, which demonstrates why understanding history is so important to clear thinking in public health ethics, policy, and law: what is new is old.

In the upcoming weeks and months, various states and Canadian provinces quarantined California. In May 1900, President McKinley barred Chinese and Japanese people from traveling outside the state. The health board’s official public health orders declaring the involuntary quarantine of Chinatown became effective in late May, and almost immediately thereafter, a Chinese-American man named Jew Ho filed a lawsuit that formed the basis of the critical case of Jew Ho v. Williamson, 103 F. 10 (N.D. Cal. 1900).

Jew Ho is a hugely important case in the history of public health law in the US. The plaintiff faced an uphill challenge in prevailing. Although the full scope of state authority to regulate in the name of public health would not be established until the US Supreme Court’s 1907 decision in Jacobsen v. Massachusetts, there was little doubt even in 1900 that the state’s authority to regulate, especially in a public health emergency, was vast. The district court explained that

this court will, of course, uphold any reasonable regulation that may be imposed for the purpose of protection the people of the city from the invasion of epidemic disease. In the presence of a great calamity, the court will go to the greatest extent, and give the widest discretion, in construing the regulations that may be adopted by the board of health or the board of supervisors.[3]  

Indeed, as the COVID-19 pandemic illustrates, the scope of a state’s police power to regulate in the name of public health, especially in dealing with an epidemic disease, is immense. The breadth of state power in the US federalist system is arguably the basis for the study of public health law in the US—the expansive state powers can and have been used for great ill as well as for good, and balancing a commitment to individual rights and social justice with needed actions in the name of public health is a fraught and difficult endeavor (Gostin and Wiley 2016; Wiley 2012).

Yet, the court noted in Jew Ho, there are limits to those powers even in the face of an outbreak of communicable disease. The court expressed particular concern over the inefficacy of the cordon. There was no indication that plague was strictly confined to Chinatown; the cordon would be likely to intensify the outbreak, putting virtually everyone in the city in greater danger. Moreover, the court also noted the invidious racism of the law:

The evidence here is clear that this [law] is made to operate against the Chinese population only, and the reason given for it is that the Chinese may communicate the disease from one to the other. That explanation, in the judgment of the court, is not sufficient. It is, in effect, a discrimination, and it is the discrimination that has been frequently called to the attention of the federal courts where matters of this character have arisen with respect to Chinese.[4]

The court observed that the public health order specifically exempted dwellings within the cordon owned by White people and concluded that this was indisputable proof of the explicit racism embodied in the law. Ultimately, the court invalidated the law, concluding that it was “unreasonable, unjust, and oppressive,” and violated the Equal Protection Clause of the US Constitution.

The plague outbreaks in San Francisco in the early twentieth century, as well as Jew Ho, offer several important lessons for thinking about COVID-19 stigma and our ethical obligations to remedy such stigma. First, explicit racial stigma against people of Asian descent given an outbreak of epidemic disease in the US is not new. Second, public health law is a frequent and often effective prism for channeling preexisting stigma against marginalized and oppressed groups, especially along the axis of race. Third, where public health is a mediator of racial stigma, it can be wielded for good as well as for ill. Although the weight of history suggests law and social policy all too frequently are utilized to intensify racial and disease stigma, Jew Ho illustrates that they can also be used to ameliorate the impact of such stigma. As Blake and Hatzenbuehler (2019) recently suggested, antidiscrimination and civil rights law in particular, if enforced, are powerful vehicles for remedying stigma at the structural level. Moreover, using law and social policy to combat stigma is a high-priority anti-stigma intervention precisely because laws are upstream, macrosocial structures that can exert an enormous influence on behavior if not on norms.

Historians such as Randall Packard (1989) and Saul Dubow (1995) have also documented another excellent example of the structural connections between infectious disease stigma, racism, and law, this in modern South Africa. There, White settlers and medical authorities drew on similar ideas of biological inferiority and physiological differences “in explaining the apparently higher susceptibility of Africans to disease” (Packard 1989, 196). Moreover, medical officials used these racialized concepts of disease to initiate processes of residential and physical racial segregation (ibid., 195). Public health and sanitary laws were then enacted that codified these geographies, as Harriet Deacon has noted: “public health legislation for plague control permitted more systematic residential segregation of Africans from whites in many Cape towns in the early twentieth century” (1996, 289). And Susan Parnell explains how South African capitalists used public health legislation to “export British planning practices … [to] nurture the emerging racial and class differences” (1993, 472). Parnell also documents the explicit intention of Dr. Charles Porter, the powerful medical officer of health for the city of Johannesburg, to base town planning laws almost entirely on the public health justification for racial segregation (ibid). 

Ultimately, if stigma is an independent social determinant of health, and if law is a structural anti-stigma mechanism, it follows that law is a social determinant of health. The empirical evidence overwhelmingly supports this claim. Law is a powerful social determinant of health (Hoss 2019; Burris 2011). This fact has significant implications for priority-setting in countering COVID-19 stigma.

IV. LEGAL EPIDEMIOLOGY AND THE USE OF PUBLIC HEALTH LAW AS ANTI-COVID-19-STIGMA MECHANISMS

Legal epidemiology is “the scientific study and deployment of law as a factor in the cause, distribution, and prevention of injury and disease in a population” (Burris, Cloud, and Penn 2020, S4). In the field, laws are regarded as epidemiologic exposures. Consider the subfield of social epidemiology, which focuses on the links between socioeconomic conditions and population health outcomes. Pioneering social epidemiologist Nancy Krieger has developed the idea of embodiment, through which both salubrious and deleterious socioeconomic conditions become literally embodied in ways that powerfully determine health across the life span (Krieger 2005). It is axiomatic among social epidemiologists that laws and social policies, or their absence, is a primary mechanism through which affluence or deprivation becomes embodied. Thus, robust social welfare policies that protect the least well-off and buffer the impact of structural deprivation can limit the extent to which these conditions diminish health.

If laws and social policies are such powerful mechanisms for channeling the enormous impact of social conditions on health and its distribution in human population, it follows that the laws and policies themselves can fairly be regarded as epidemiologic exposures akin to any other (e.g., toxicants, tobacco, hazardous working conditions). Even so, until very recently laws and policies were not studied using prominent methods in epidemiologic science. One obvious reason for this lacuna is that studying law in this way requires inter- and transdisciplinary approaches (Burris et al. 2016); lawyers and legal scholars are not traditionally equipped with the needed epidemiologic and methodological training, and epidemiologists do not typically maintain legal expertise. A second reason is that studying law as an epidemiologic exposure is methodologically difficult. Polities are not closed systems, and given the myriad confounders, it is difficult to show how a change in a law caused a particular health outcome.

Nevertheless, there is every reason to believe that changes in laws and social policies do cause particular health outcomes, which makes the study of legal epidemiology worthwhile and important. While the emerging field has come relatively far in its short existence, the use of legal mechanisms to combat stigma at the structural level remains incipient. The vast majority of anti-stigma mechanisms remain targeted at downstream manifestations, and are plagued by what I have referred to as “methodological individualism” (Goldberg 2012). Methodologically individualist approaches see the individual as the primary unit of change, and there is excellent evidence that interventions characterized by such an approach tend to be ineffective (ibid.). While anti-stigma interventions focused on changing individual attitudes, practices, and beliefs do show some anti-stigma effects (Corrigan et al. 2001), these effects are both modest and transient (Gronholm et al. 2017).

This observation itself underscores an important point: whether a given intervention reduces COVID-19 or any other kind of stigma is an empirical question.[5] Public health and social science has many validated scales that can be used to measure stigma, and anti-stigma interventions should be rigorously evaluated for impact. Such interventions should also be evaluated for specificity—are they overtly directed at alleviating stigma or is that simply an expected co-benefit?

Wicked problems like stigma, especially in the face of a terrifying pandemic, are unlikely to be resolved by a single approach or intervention. Instead, what is required is a policy bundle that integrates a number of different interventions in the hopes of reducing the devastating impact of infectious disease stigma that so commonly tracks race, class, gender, and disability status. Within this bundle, there is room even for methodologically individualist interventions that demonstrate efficacy. However, it would be unethical for empowered moral agents to rely on such interventions alone, and at least ethically suboptimal to prioritize such interventions over interventions that are targeted at upstream, macrosocial structures (Goldberg 2012). Legal epidemiology suggests that law- and policy-centered approaches are promising because they are more closely connected to the root structural factors driving the stigmas that operate in the social space of epidemic disease. What might such laws and policies look like?

Yet again, understanding stigma as structural can be of assistance. There is no shortage of invidious, person-centered racism that COVID-19 has activated. At one point in mid-March, the advocacy group Stop AAPI Hate had documented more instances of anti-Asian-American racism (over 1,100) than COVID-19 deaths in the US. Explicit antisemitism has also waxed, with blood libel accusations in France that Jews were once again poisoning the proverbial wells, and ultra-Orthodox Jews in Brooklyn being shamed and beaten for congregating in small groups. The mayor of New York City came under significant criticism for angrily denouncing crowds of Jews gathering to mark the COVID-19 death of an important rabbi while he said little publicly about the many gatherings of non-Jewish people occurring contemporaneously in the city.

But stigma is insidious. It tracks existing networks of social power and deprivation, and therefore structural and institutional racism has made a powerful imprint on the course and impact of COVID-19 across and within the US in particular. The terrible inequalities in the prevalence, incidence, and severity of COVID-19 especially on Black and Brown people must be centered in any conversation on COVID-19 stigma and racism. The statistics are horrifying (Table 1).

Table 1 (data sourced from The COVID Racial Data Tracker, https://covidtracking.com/race)

State Black or African- American alone    
  % of Population % of Positive Cases % of Deaths
Michigan 14.10 39.02 42.94
Louisiana 32.70 56.73
Arkansas 15.70 38.83 37.93
Kansas 6.10 13.66 32.47

In Michigan, African-Americans comprise 39% of COVID-19 cases and 43% of deaths, despite making up only 14% of population. In Louisiana, data from early April indicated that African-American people constituted 57% of the deaths from COVID-19 (they make up 33% of the population). Similarly large differences for African-Americans are evident in Arkansas and Kansas, and for positive cases among Latinx populations in Colorado, Illinois, Minnesota, and Massachusetts (Table 2).

Table 2 (data sourced from The COVID Racial Data Tracker, https://covidtracking.com/race)

State Hispanic or Latinx Alone    
  % of Population % of Positive Cases % of Deaths
Colorado 21.70 40.84 17.32
Illinois 14.60 24.28 32.40
Minnesota 6.80 27.74 7.25
Massachusetts 8.90 15.44 9.20

And then there is the toll COVID-19 is taking on Indigenous Peoples in the US. At the time of this writing, the Navajo Nation has the highest per-capita rate of positive COVID-19 cases in the US. According to a recent Washington Post article, “One-third of the homes across the vast, dry reservation don’t have running water, forcing families to haul it in. Many in close-knit Navajo communities live in crowded houses where self-quarantine is impossible, and many must drive hours to the nearest grocery store” (Fonseca and Sullivan 2020). Native Americans make up about 10% of the overall population in New Mexico and account for 59% of the cases.

Although racial health inequalities are increasingly well-reported and well-documented, it is vital to see these inequalities as a product of the same kinds of structural stigma and racism discussed in this paper. The invidious, explicit bigotry directed at Asian-Americans and people of Asian descent in the US is racism. But racism is also the inequitable morbidity and mortality of COVID-19. The former is more likely to be individual and person-centered. The latter is structural and institutionalized, but no less a manifestation of stigma power.

In mid-March 2020, a Native American health center in Washington state requested needed personal and protective equipment (“PPE”) from state and federal agencies. In early May, the health center received: a box of body bags (Ortiz 2020). Indigenous health leader Abigail Echo-Hawk noted that “this is a metaphor for what’s happening” and asked “are we going to keep getting body-bags or are we going to get what we actually need?” (ibid.). The 2007 documentary film Unnatural Causes explicitly addressed the ways in which the attempted genocide of and historical racism directed at Native Americans caused the staggering inequalities in type 2 diabetes among the Tohono O’odham. The film notes the influence of the Coolidge Dam in diverting the water of the Gila River, which Native peoples had relied on for centuries. The racism here is literally embodied in a structure, but its downstream impacts are no less evident in the flows of COVID-19 at the present and its impact on Native Peoples and communities.

As noted above, a given intervention’s efficacy in countering stigma is an empirical question. Micro-level approaches are needed but are almost certainly insufficient. Meso- and macro-level approaches are more difficult to design and implement, but are likely to have much greater impact in reducing disease stigma and the linked stigmas that infectious disease typically intensifies in times of epidemic and pandemic. Blake and Hatzenbuehler’s (2019) recent article suggests antidiscrimination and civil rights laws as fruitful vehicles for macrosocial change. Similarly, researchers led by Nancy Krieger (Krieger et al. 2014) have documented the health impact of federal civil rights laws in the Jim Crow South. However, the time horizon for enacting such laws, especially on the federal level, is long indeed, and may depend significantly on the vagaries and preferences of administrations and political power. Even on the individual state level, the time horizon for such changes may be lengthy.[6]

In contrast, meso-level law and policy structures represent a promising pathway towards addressing structural stigma in a shorter time frame than that required to change laws and policies at the highest levels. Every health-oriented organization has local policies; some, like local health departments, have lawmaking power as well. These policies and laws can have an enormous influence on the extent to which a person touched by the given organization experiences stigma and racism. Some such interventions will require that lawmaking authority, as in the City of Reykjavik’s 2016 decision to change its Human Rights Policy to make weight a protected category (City of Reykjavik 2020). But even absent such authority, within the bounds of existing laws and regulations, health systems are empowered to change their own policies as they see fit. As to COVID-19, and for example, policies could be issued in ways that encourage appropriate language use, especially when care teams are serving people of color. This should not be understood as the mere policing of language; the power of naming is enormous, and the philosophy of language establishes beyond question that language is a primary conceptual scheme. Unsurprisingly, language is also powerful freight for stigma and racism, and therefore intentional changes in language can ameliorate structural stigma and racism (they can also perpetuate such stigma, as in the continued insistence in referring to the novel coronavirus as the “Chinese virus”). Decades of data also document the ways in which people of color’s testimony regarding their own illness symptoms are typically invalidated, disbelieved, and de-legitimized (Buchman, Ho, and Goldberg 2017). Scouring policies and guidelines for protocols that instantiate and sustain these cultures of epistemic injustice can help counter structural stigma and racism; a health system could, for example, issue a guideline reminding care teams that complaints about shortness of breath, fatigue, or pain must be trusted as prima facie valid even in the absence of laboratory findings that enable clinical correlation.

But meso-level approaches can also be used in ways that address the structural racism that drives racial COVID-19 inequalities. In partnership with states, local governments can change zoning and housing ordinances, suspend eviction proceedings and utility shut-offs, and minimize law enforcement activities against vulnerable populations for people experiencing homelessness and housing insecurity (Benfer and Wiley 2020). Local governments can schedule administrative hearings and agencies can issue findings. Table 3 summarizes some of the suggested meso-level approaches that embrace law and a policy as tools to alleviate structural stigma.

Table 3 Meso-Level Anti-Stigma Law/Policy Interventions by Sector

  Sector    
  Public (w/ lawmaking authority) Private  
Intervention Changing town/city charter Changing language policies  
  Changing municipal/county ordinances Changing forms, records, and associated protocols  
  Holding hearings Changing org policy guidelines for specific anti-stigma clinical practices  
  Issuing legislative or agency findings Changing hiring, promotion & retention policies  
  Strengthening existing antidiscrimination policies Strengthening existing antidiscrimination policies  

Law is a social determinant of health. The measurement of law as an epidemiologic exposure remains incipient, and this is certainly true with regard to structural stigma. Although stigma has been measured for decades, the unit of measurement has consistently been the individual, with group-level data obtained by aggregating measurements of individuals. While this method is both valid and useful, it is not truly a measure of stigma at the structural level. Different tools are needed to evaluate whichlaws and policies promote stigma and which inhibit it. Data like these can then be integrated in the design of laws and policies that promise greater efficacy in the remediation of structural stigma. 

V. CONCLUSION

Having accurate concepts of given health problems is crucial for designing, implementing, and delivering interventions for their remediation. Where a problem is misapprehended, the likelihood diminishes that the intervention will improve the problem substantially and/or with enduring effects. This is almost certainly the case with stigma, which has typically been measured in health contexts via methodologically individualist techniques.

Stigma is an independent social determinant of health, and like most such determinants, is primarily driven by upstream, structural factors connected to historical patterns of domination, subordination, and oppression. Interventions for stigma must therefore act on the structural level, even as part of a policy bundle that should include meso- and micro-level remedies. Legal and policy mechanisms are especially promising interventions precisely because they are often themselves upstream structural factors in producing health and its distribution. While, all too often in US history, laws and policies have been used to intensify preexisting stigmas during infectious disease outbreaks, the fact that public health law mediates stigma means it can be harnessed to ameliorate stigma. The basic insight at the core of legal epidemiology can help stakeholders harness the power of law and policy: law is a social determinant of health. It can be measured and assessed for its impact in promoting or inhibiting stigma, and such data can then be deployed in the design and implementation of law and policy approaches that promise greater efficacy in the remediation of structural stigma.

Although this analysis and approach can be utilized against virtually any form of health- and disease-related stigma, epidemic disease typically intensifies preexisting prejudices and stigmas that intersect with the disease stigma itself. COVID-19 is only the latest example, and shows well how outbreaks amplify both person-centered, explicit racism and the structural, institutionalized racism that is responsible for racial health inequalities in the US. Where stigma and racial animus are functions of power and oppression, it is critical to de-prioritize downstream, individualistic interventions that may provide ancillary benefits but do not demonstrate robust anti-stigma effects.

Ultimately, laws and policies should be prioritized as primary anti-stigma mechanisms, and can be targeted at both macro- and meso-levels given the different plausibility profiles and time horizons needed for each. The ethical imperative for countering stigma is clear, but there are also strong epidemiologic justifications for prioritizing anti-stigma interventions as well. These rationales are no weaker and are arguably stronger in times of epidemic and pandemic disease, like COVID-19.

REFERENCES

Benfer, Emily A., and Lindsay F. Wiley. 2020. “Health Justice Strategies To Combat COVID-19: Protecting Vulnerable Communities During A Pandemic.” Health Affairs Blog, March 19. https://www.healthaffairs.org/do/10.1377/hblog20200319.757883/full/.

Blake, Valarie K., and Mark L. Hatzenbuehler. 2019. “Legal Remedies to Address Stigma‐Based Health Inequalities in the United States: Challenges and Opportunities.” The Milbank Quarterly 97 (2): 480–504.

Bolin, Bob, Sara Grineski, and Timothy Collins. 2005. “The Geography of Despair: Environmental Racism and the Making of South Phoenix, Arizona, USA.” Human Ecology Review : 156–68.

Buchbinder, Mara, Dragana Lassiter, Rebecca Mercier, Amy Bryant, and Anne Drapkin Lyerly. 2016. “‘Prefacing the Script’ As an Ethical Response to State-mandated Abortion Counseling.” AJOB Empirical Bioethics 7 (1): 48–55.

Buchman, Daniel Z., Anita Ho, and Daniel S. Goldberg. 2017. “Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain.” Journal of Bioethical Inquiry 14 (1): 31–42.

Burris, Scott. 2002. “Disease Stigma in US Public Health Law.” The Journal of Law, Medicine & Ethics 30 (2): 179–90.

———. 2011. “Law in a Social Determinants Strategy: A Public Health Law Research Perspective.” Public Health Reports 126 (3 suppl): 22–27.

Burris, Scott, Ichiro Kawachi, and Austin Sarat. 2002. “Integrating Law and Social Epidemiology.” Journal of Law, Medicine, & Ethics 30: 510–21.

Burris, Scott, Lindsay K. Cloud, and Matthew Penn. 2020. “The Growing Field of Legal Epidemiology.” Journal of Public Health Management and Practice 26: S4–S9.

Burris, Scott, Marice Ashe, Donna Levin, Matthew Penn, and Michelle Larkin. 2016. “A Transdisciplinary Approach to Public Health Law: The Emerging Practice of Legal Epidemiology.” Annual Review of Public Health 37: 135–48.

City of Reykjavik. 2020. “The City of Reykjavik’s Human Rights Policy.” Revised October 18, 2016.   https://reykjavik.is/en/city-of-reykjaviks-human-rights-policy#6.%20Body%20build%20and%20type.

Corrigan, Patrick W., L. Philip River, Robert K. Lundin, et al. 2001.“Three Strategies for Changing Attributions about Severe Mental Illness.” Schizophrenia Bulletin 27 (2): 187–95.

Courtwright, Andrew. 2009. “Justice, Stigma, and the New Epidemiology of Health Disparities.” Bioethics 23 (2): 90–96.

———. 2013. “Stigmatization and Public Health Ethics.” Bioethics 27 (2): 74–80.

Deacon, Harriet. 1996. “Racial Segregation and Medical Discourse in Nineteenth‐century Cape Town.” Journal of Southern African Studies 22 (2): 287–308.

Dubow, Saul. 1995. Scientific Racism in Modern South Africa. Cambridge University Press.

Duffy, John. 1992. The Sanitarians: A History of American Public Health. University of Illinois Press.

Fonseca, Felicia, and Tim Sullivan. 2020. “In Close-knit Navajo Nation Communities, Virus Takes Hold.” Washington Post, April 11. https://www.washingtonpost.com/health/in-close-knit-navajo-nation-communities-virus-takes-hold/2020/05/11/a1946770-9395-11ea-87a3-22d324235636_story.html.

Gioia, Dennis A., and Peter P. Poole. 1984. “Scripts in Organizational Behavior.” Academy of Management Review 9 (3): 449–59.

Godsil, Rachel D. 2004. “Viewing the Cathedral from Behind the Color Line: Property Rules, Liability Rules, and Environmental Racism.” Emory LJ 53: 1807.

Goffman, Erving. 1963. Stigma: Notes on the Management of Spoiled Identity. Simon and Schuster.

Goldberg, Daniel S. 2012. “Social Justice, Health Inequalities and Methodological Individualism in US Health Promotion.” Public Health Ethics 5 (2): 104–15.

———. 2017. “On Stigma & Health.” Journal of Law, Medicine, & Ethics 45: 475–83.

Gostin, Lawrence O., and Lindsay F. Wiley. 2016. Public Health Law: Power, Duty, Restraint. University of California Press.

Greely, Henry J. 2020. “COVID-19 Immunity Certificates: Science, Ethics, Policy, and Law.” Journal of Law and Biosciences, lsaa035, https://doi.org/10.1093/jlb/lsaa035.

Gronholm, Petra C., Claire Henderson, Tanya Deb, and Graham Thornicroft. 2017. “Interventions to Reduce Discrimination and Stigma: The State of the Art.” Social Psychiatry and Psychiatric Epidemiology 52 (3): 249–58.

Hoss, Aila. 2019. “Federal Indian Law as a Structural Determinant of Health.” The Journal of Law, Medicine & Ethics 47 (4 suppl): 34–42.

Kalisch, Philip A. 1972. “The Black Death in Chinatown: Plague and Politics in San Francisco 1900-1904.” Arizona and the West 14 (2): 113–36.

Kendi, Ibram X. 2016. Stamped from the Beginning: The Definitive History of Racist Ideas in America. Bold Type Books.  

Kofler, Natalie, and Françoise Baylis. 2020. “Ten Reasons Why Immunity Passports are a Bad Idea.” Nature  581: 379–81.

Kraut, Alan M. 1994. Silent Travelers: Germs, Genes, and the Immigrant Menace. Johns Hopkins University Press.

Krieger, Nancy. 2005. “Embodiment: A Conceptual Glossary for Epidemiology.” Journal of Epidemiology & Community Health 59 (5): 350–55.

Krieger, Nancy, Jarvis T. Chen, Brent A. Coull, Jason Beckfield, Mathew V. Kiang, and Pamela D. Waterman. 2014. “Jim Crow and Premature Mortality Among the US Black and White Population, 1960–2009: An Age–Period–Cohort Analysis.” Epidemiology (Cambridge, Mass.) 25 (4): 494.

Leavitt, Judith Walzer. 1996. Typhoid Mary: Captive to the Public’s Health. Beacon Press.

Link, Bruce G., and Jo Phelan. 2014. “Stigma Power.” Social Science & Medicine 103: 24–32.

McClain, Charles. 1988. “Of Medicine, Race, and American Law: The Bubonic Plague Outbreak of 1900.” Law & Social Inquiry 13 (3): 447–513.

Ortiz, Erik. 2020. “Native American Health Center Asked for COVID-19 Supplies. It got Body Bags instead.” NBC News, Mary 6. https://www.nbcnews.com/news/us-news/native-american-health-center-asked-covid-19-supplies-they-got-n1200246.

Osypuk, Theresa L., and Dolores Acevedo-Garcia. 2010. “Beyond Individual Neighborhoods: A Geography of Opportunity Perspective for Understanding Racial/Ethnic Health Disparities.” Health & Place 16 (6): 1113–23.

Packard, Randall M. 1989. White Plague, Black Labor: Tuberculosis and the Political Economy of Health and Disease in South Africa, Volume 23. University of California Press.

Parnell, Susan. 1993. “Creating Racial Privilege: The Origins of South African Public Health and Town Planning Legislation.” Journal of Southern African Studies 19 (3): 471–88.

Patterson, Andrea. 2009. “Germs and Jim Crow: The Impact of Microbiology on Public Health Policies in Progressive Era American South.” Journal of the History of Biology 42 (3): 529.

Persad, Govind, and Ezekiel J. Emanuel. 2020. “The Ethics of COVID-19 Immunity-Based Licenses (“Immunity Passports”).” JAMA 323 (22): 2241–42.

Phelan, Jo C., Jeffrey W. Lucas, Cecilia L. Ridgeway, and Catherine J. Taylor. 2014. “Stigma, Status, and Population Health.” Social Science & Medicine 103: 15–23.

Risse, Guenter B. 2012. Plague, Fear, and Politics in San Francisco’s Chinatown. Johns Hopkins University Press.

Rosenberg, Charles E. 1992. Explaining Epidemics. Cambridge University Press.

———–. 2009. The Cholera Years: The United States in 1832, 1849, and 1866. University of Chicago Press.

Schabert, Jasmin, Jessica L. Browne, Kylie Mosely, and Jane Speight. 2013. “Social Stigma in Diabetes.” The Patient-Patient-Centered Outcomes Research 6 (1): 1–10.

Shah, Nayan. 2001. Contagious Divides: Epidemics and Race in San Francisco’s Chinatown, Volume 7. University of California Press.

Smith, Kylie. 2020. Talking Therapy: Knowledge and Power in American Psychiatric Nursing. Rutgers University Press.

Starr, Paul. 1982. The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry. Basic Books.

Tomes, Nancy. 1999. The Gospel of Germs: Men, Women, and the Microbe in American Life. Harvard University Press.

Trauner, Joan B. 1978. “The Chinese as Medical Scapegoats in San Francisco, 1870-1905.” California History 57 (1): 70–87.

Warner, John Harley, and Janet A. Tighe (editors). 2001. Major Problems in the History of American Medicine and Public Health: Documents and Essays. Wadsworth Publishing Company.

Westbrook, Mary T., Varoe Legge, and Mark Pennay. 1993. “Attitudes Towards Disabilities in a Multicultural Society.” Social Science & Medicine 36 (5): 615–23.

Wiley, Lindsay F. 2012. “Rethinking the New Public Health.” Wash. & Lee Law Review 69: 207.


[1] Most of the substantive claims laid out in this section have been developed and rigorously sourced in (Goldberg 2017). Therefore, references in this section will be limited to substantiating novel claims or supplementing with newer research and data.

[2] This itself is a core part of older doctrines of “moral hygiene,” and its distinctly classist form is a well-studied topic in the history of public health and the history of nursing (Smith 2020; Rosenberg 1992).

[3] Jew Ho v. Williamson, 103 F. 10 (C.C.N.D. Cal. 1900), at 21.

[4] Jew Ho v. Williamson, 103 F. 10 (C.C.N.D. Cal. 1900).

[5] The ethical obligation to remedy stigma is almost self-evident, although commentators have supplied the necessary arguments to ground the mandate (see Goldberg 2017, citing references; Courtwright 2009; 2013).

[6] It may be more tenable in the short to intermediate term to focus on changing enforcement priorities and approaches to existing antidiscrimination and civil rights laws. While there is no doubt enforcement is crucial, measuring commitment to and levels of enforcement is an enormous challenge. As an emerging field, legal epidemiology to date has focused on measuring codified law and has not yet emphasized assessment of enforcement and implementation.

Special Issue, Uncategorized

Intellectual Disability and Justice in a Pandemic

Ryan H. Nelson & Leslie P. Francis

[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]

ABSTRACT. Much of the discussion of care prioritization during the COVID-19 pandemic has focused on access to high-technology, intensive care under crisis conditions. This is understandable in light of initial fears that widespread triage and rationing measures would become necessary. However, as observations about the interplay between social determinants of health and COVID-19 infection rates and outcomes have become increasingly clear, attention has also been directed to inequalities in health and healthcare in the US. In this paper, we address another less-discussed set of issues: problems of discrimination and injustice involving people with intellectual disabilities confronted by COVID-19 that go beyond those seen in policies governing triage and rationing. After discussing the proper role of quality of life judgments in healthcare, we consider a range of issues relevant to people with intellectual disabilities, including staffing and structures in group-home facilities, the need for adaptive communication, and the role of support persons during care. Addressing some of these issues will require policy changes that may be widely beneficial; adjustments particular to individuals will also need to be evaluated from the perspective of whether they create undue risks. To address these issues, we draw insights from disability anti-discrimination law as it interfaces with the ethics of patient care, especially the distinction between accommodations for individual patients and modifications of policies addressing access to services and healthcare.

INTRODUCTION

If the COVID-19 crisis has brought any benefits, one is the increased attention paid to persons with disabilities in the contexts of clinical medicine and public health. There has been a great deal of insightful discussion since the outbreak about controversial disability issues the pandemic has brought to light. For a population often overlooked in both academic circles and the public square, mere visibility is a victory. There are at least two important respects in which the discussion remains underdeveloped, however.

First, much of the work being done has focused on disability considerations in policies governing triage and the rationing of critical care resources under crisis conditions. This is undoubtedly an important, and ethically complex, issue. Yet its immediate significance is limited since the vast majority of hospitals have not needed to implement their triage policies and thus have largely avoided the difficult “two patients, one ventilator” kinds of decisions initially feared. This being so, it is worth looking beyond crisis care to broader issues concerning contingency care, the health needs of persons with disabilities, and how the healthcare system can ethically respond to them in a pandemic.

Second, while disability in general has been a focal point throughout the crisis, intellectual disability (ID) in particular has received much less attention. ID is classified as a childhood onset neurodevelopmental disorder (APA 2013) involving a number of factors, including intellectual functioning (often measured with an IQ test) and adaptive behaviors (such as conceptual, practical, and social skills) (AAIDD 2010). The needs of people with ID, and the challenges they face, warrant independent consideration as they are often distinct from those of the broader disability community. Moreover, those with ID often face additional barriers to self-advocacy and are therefore less well represented in disability debates.[1] In this article, we aim both to broaden the COVID-19 discussion beyond triage and rationing and to focus it on the circumstances of people with ID.

We begin by outlining the recent debate over quality of life judgments in crisis care plans, highlighting how concerns about disability discrimination extend well beyond the context of crisis and apply to people with ID. We then consider how the unique needs of those with ID may impact their use of medical resources and affect ethical judgments about allocation. Next, we draw insights from disability anti-discrimination law as it interfaces with the ethics of patient care, particularly with respect to the distinction between accommodations and modifications. We conclude by identifying some additional forms of direct and indirect disadvantage associated with ID, considering whether any can be justified, and developing an ethical account of how they may be addressed.

INTELLECTUAL DISABILITY AND QUALITY OF LIFE

As state governments and private hospitals scrambled to develop crisis standards of care plans, triage protocols, and rationing guidelines in the early days of the COVID-19 crisis, disability advocates became increasingly concerned that people with disabilities were being unfairly disadvantaged. This concern appears to have been well founded. In its analysis of thirty state policies, the Center for Public Integrity (2020) found that “all but five had provisions of the sort advocates fear will send people with disabilities to the back of the line for life-saving treatment.” Antommaria et al. (2020) report that only around a quarter of allocation policies specify that decisions should not be based on disability, also noting “potential inconsistencies” in policies that “exclude disability discrimination but categorically exclude patients with certain preexisting conditions from receiving mechanical ventilation.”

Of particular concern has been the role of quality of life judgments in the plans. While the vast majority avoid explicit appeals to quality of life, a number of policies include provisions that, critics charge, discriminate against persons with disabilities and may rely on judgments that are at least indirectly related to quality of life judgments. Advocates have objected to ill-defined considerations related to “baseline functional status,” “comorbidity,” “health,” and “long-term survival” considerations as dogwhistles for disability bias (CPR et al. 2020; Stramondo 2020). Some argue that only criteria directly related to short-term survival—as calculated by SOFA or APACHE II scoring systems, for example—are legitimate for prioritization, thus rejecting categorical exclusion criteria and consideration of long-term prognosis (CPR et al. 2020). Other advocates go further, insisting that even differences in short-term survivability criteria risk being discriminatory against people with disabilities and that only strict “futility” provides legitimate grounds for denying treatment (DREDF 2020; Ne’eman 2020).

Concerns about potential discrimination may be compounded for people with ID, due in part to perceptions about the connection between intellectual functioning and quality of life. In an especially controversial example of guidelines disability advocates found objectionable, the state of Alabama initially emphasized a “successful outcome” with regard to “cognitive, neurological, and psychosocial” functioning, stating that “persons with severe mental retardation…may be poor candidates for ventilator support” (2020). A complaint from Alabama Disability Advocacy Program condemned the practice of “singling out and authorizing the denial of treatment to individuals with intellectual and cognitive disabilities based on misguided assumptions about the quality of life, the value of life, the prospects for survival, and the resource needs of people with disabilities” (ADAP 2020). Although Alabama has since withdrawn the guidelines, the ID advocacy group The Arc (2020) has filed similar complaints in Washington, Tennessee, Utah, Oklahoma, Connecticut, North Carolina, and Oregon.

While it is certainly worthwhile to point out the potential for ableist bias in crisis plans, we suggest that a more immediate concern lies in the role quality of life judgments play in contingency care, the space between convention and crisis in which a hospital “adapts available patient care spaces, staff, and supplies as part of the response to a surge in demand for services” (IM 2009). This concern is more immediate for two reasons. First, a number of hospitals have actually been operating in a contingency state due to the surge of COVID-19 patients, whereas very few have needed to implement crisis standards. Second, contingency care has the potential to be much more variable than that provided under crisis standards. However flawed their content, crisis plans typically include explicit protocols and oversight to ensure consistency of application. Contingency care, on other hand, can involve a range of less well-defined and more discretionary actions, which risks introducing a greater degree of inconsistency and bias.

Decisions that individual clinicians may be inclined, encouraged, or forced to make in a contingency state include those pertaining to hospital admissions from the emergency department, ICU admissions from the hospital floor, interventions offered and recommendations made, code status discussion, choices among resources to conserve and how aggressively to conserve them, and more. Granting that the vast majority of clinicians operate with good intentions, data about ableist bias in medicine gives us reason to believe that persons with disabilities may be disadvantaged in these kinds of unavoidably subjective, bedside decisions.

For example, the National Council on Disability has found that misperceptions about the quality of life of people with disabilities have “negatively influenced physicians’ medical futility decisions and resulted in the withholding/withdrawal of necessary medical care from people with disabilities” (NCD 2019, 9). Similarly, Putman et al. report that “physicians were half as likely to recommend full medical treatment when the patient had severe cognitive deficits” and that they were much more likely to use DNR orders in patients with diminished cognitive function (2016; see also Chakraborty and Creaney 2006). What is more, research into the phenomenon of “diagnostic overshadowing” has “consistently demonstrated that the cognitive deficits displayed by an individual negatively impacted the ability of clinicians to make accurate judgments with regard to other co-occurring disorders” (Kanne 2013).

It is plausible to suppose that the pressures of a pre-crisis pandemic surge would only amplify these effects. In this context, disability discrimination risks going unnoticed, since it may stem from relatively subtle forms of individual bias and because the relevant decisions tend not to be strictly governed by publicly available institutional or state policies. Without oversight, it will prove difficult to gather data about how the range of care decisions made under contingency conditions impact those with ID. This is important; one study already published reveals higher case-fatality rates from COVID-19 of people with intellectual and developmental disabilities especially among younger adults, notes the paucity of data about this population, and suggests that one possible explanation for these differences may be comorbidities (Turk et al. 2020). The study does not explore the potential role of differences in contingency care.

QUALITY OF LIFE: OBJECTIONS AND ARGUMENT

The debates surrounding COVID-19 and disability have given rise to two distinct objections to incorporating of quality of life judgments in healthcare, which we will call the ‘practical objection’ and the ‘principled objection.’ According to the practical objection, quality of life judgments are objectionable insofar as they are inaccurate. One form of the practical objection holds that it is infeasible to conduct accurate quality of life assessments under crisis conditions. For example, in their widely-cited discussion of triage protocols, Emanuel et al. (2020) argue that “limited time and information during an emergency…counsel against incorporating patients’ future quality of life, and quality-adjusted life-years, into benefit maximization.”

Another form of the practical objection appeals to the well-documented concern that quality of life judgments are fraught with ableist bias and often fail to account for the complexity of the relationship between disability and wellbeing (Peña-Guzmán and Reynolds 2019; Campbell and Stramondo 2017). Peña-Guzmán and Reynolds, for example, explore how physicians’ epistemic overconfidence rooted in ableism affects communication with patients with disabilities and judgments about quality of life, thus contributing to medical errors. The National Council on Disability reports that “providers often perceive people with disabilities to have a low quality of life when, in reality, most report a high quality of life and level of happiness” (NCD 2019). There is a particularly strong connection between clinicians’ perception of quality of life and “diminished cognition” (Putman et al. 2016). Moreover, discrimination against people with ID may be difficult to identify since “evaluative judgments about appropriate treatment based on subjective quality of life considerations are often framed as medical decisions” (NCD 2019).

The practical objection, then, holds that quality of life judgments are unreliable and risk introducing unnecessary subjectivity, inconsistency, and bias into medical practice. By contrast, the principled objection holds that quality of life judgments, even if feasible and reliable, are simply not ethically relevant to decisions about the allocation of healthcare. This argument has been based on the fundamental equality and dignity of persons: that all human life is valuable and worthy of protection. In a joint statement addressing various forms of bias in the response to COVID-19, Anderson et al. (2020) argue that

no…prioritization principles should be allowed to undermine a core conviction of our moral tradition, viz., that the lives of all human beings are of inherent, equal, and indeed incalculable value. We should eschew all invidious discrimination and recommit ourselves to treating all who are ill as bearers of profound, inherent, and equal worth and dignity.

Roger Severino, director of the Office of Civil Rights, echoed this point forcefully in a recent statement: “Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism” (HHS OCR 2020).

The idea of equal and inherent worth of human beings is certainly a powerful one. Yet the principled objection may be seen as wishing away some of the most difficult problems in medical ethics. How are we to allocate transplantable organs if all human life is equally worthy of protection? How can we make sense of the idea that some life-sustaining treatments are inappropriate if life is inherently valuable? Why do we allow determinations of death by neurologic criteria if cognitive functioning is an illegitimate consideration? In the context of a pandemic, the principled objection risks ignoring the fact that practicing medicine can involve unavoidable zero-sum tradeoffs among patients, as well as judgments about what counts as beneficial treatment and a successful outcome.

One important question, then, is how to avoid discriminating against people with ID while recognizing that drawing certain distinctions between patients is necessary—and, indeed, appropriate, especially in pandemic medicine. Our suggestion sketched here is that implausible sanctity-of-life commitments can be avoided without introducing the problematic comparative quality of life judgments that so often unfairly disadvantage those with ID. The key lies in distinguishing the subjective grounding of quality of life judgments from judgments about the existence of life itself.

Judgments about a person’s quality of life are about the value of the life for the person—the person’s good—and are thus conditioned on subjectivity. That does not mean that the individual must make these judgments for herself, but it does mean that they must be rooted in some experiential life of the individual (Francis and Silvers 2007). Our view also does not take sides on whether quality of life judgments are themselves subjective or objective; all we assume here is that a necessary condition for quality of life judgments to be made about a person is that the person has at least minimal experiential life to serve as a basis for judgments about what is in that person’s interests or for that person’s good.[2] Experiential life, in turn, requires a minimal level of cognitive functioning that may be absent in patients with certain disorders of consciousness and the most severe forms of ID. Attributing a quality of life judgment to these patients, therefore, involves a kind of category mistake. Distinguishing between patients who are and are not the subjects of quality of life is importantly different than actual comparisons of quality of life, in that the distinction does not depend upon judgments about whether a given quality of life is acceptable or superior to another quality of life. Instead, the idea is that patients can be said to benefit from medical treatment only if they are capable of being subjects of quality of life at all. This view potentially aligns with the Society of Critical Care Medicine’s recommendations regarding medically inappropriate treatment, which notes that patients should have “sufficient cognitive ability to perceive the benefits of treatment” (Kon et al. 2016, 1771), at least if “perceive” is understood to mean “experience subjectively.”

Healthcare is for the person’s good. While in situations of non-scarcity, we might be willing to offer healthcare (and even pay for it) for reasons other than the person’s experiential good (such as the value of life per se or the wishes of the family), prioritizing a scare resource is arguably different. If so, there is an argument for distinguishing being the subject of a quality of life from being a life in cases involving the allocation of scarce medical resources.

LEGAL CONTEXT: ACCOMMODATIONS AND POLICY MODIFICATION

In the previous section, we argued that quality of life judgments unfairly disadvantage people with ID by negatively impacting the medical care they receive in a pandemic, irrespective of any decisions about triage and rationing. We then argued that the rejection of quality of life judgments does not entail that no justified distinctions can be drawn between patients, since some patients are simply not subjects of quality of life in the relevant sense for the allocation of scarce healthcare resources.

In this section, we explain a distinction between two different forms of discrimination against people with ID in the legal context that, we argue, is also critical to contingency care decisions in pandemic conditions. Legal challenges for people with ID in pandemic conditions may involve both accommodations for individual differences and modifications of living circumstances, state reimbursement policies, or medical treatment protocols. Understanding these challenges requires a basic distinction between individualized accommodations and more general policy modifications. This distinction between accommodations and modifications is ethically important, too. The former are tailored to individuals in ways that enable them, but may seem unfairly costly; the latter may be available to everyone but may require changes in policies or programs that are seen as unacceptable. Our argument here is that accommodations for individuals must be available within structures of policy modifications that are fair.

Under the Rehabilitation Act and the Americans with Disabilities Act, “accommodations” are individualized adjustments that allow qualified persons with disabilities to perform their jobs or enjoy meaningful access to public services or accommodations. Common examples of accommodations for people with ID include altered forms of communication, decision-making supports, job coaches, or adjustments in how therapy is delivered. “Modifications” are changes in policies or the built world. Modifications are not tailored to individuals; they potentially affect many people. Curb cuts and ramps are quintessential examples of modifications in the built environment. Examples of modifications that are particularly relevant to people with ID are the establishment of home- and community-based service programs, changes in Medicaid reimbursement levels, or the formation of a Special Olympics sports program. This difference—between individual accommodation and programmatic modification—is woven throughout disability anti-discrimination law and ethics.

Moreover, the choice of whether to address disability through accommodation or modification matters, both legally and ethically. Legally, accommodations must be requested by the individuals seeking them. Individuals must be qualified for the jobs or services they seek, with or without the accommodation. Accommodations must be reasonable; they are not required if they impose undue hardship on the employer or undue burdens on public accommodations. Accommodations are not required, for example, if providing them would jeopardize the safety of the employee or the public. Modifications may be required for public services if they are reasonable and for public accommodations if they do not require a fundamental alteration of what the accommodation offers.

The distinction between individualized accommodations and programmatic modifications has been confused by courts since the seminal case interpreting the Rehabilitation Act, Southeastern Community College v. Davis.[3]Davis was a hearing-impaired applicant for Southeastern’s nursing program. She requested accommodations in the form of adjustments in communication, such as instructors facing her so that she could lipread and the availability of sign interpretation when lip reading would not suffice, and she wanted the College to make only those program adjustments that would be needed for her with these accommodations. The College refused to consider her capabilities with these accommodations; instead, they did not consider offering accommodations and instead asserted that the only possibility for her was to modify the nursing program so that she could graduate without participating in the clinical portion of the program. The Supreme Court agreed with the College and construed Davis’s request for “affirmative” relief as “affirmative action” on behalf of someone who was unqualified, echoing the criticisms of affirmative action programs involving race or sex that were growing at the time Davis was decided.

In the next major decision interpreting the Rehabilitation Act, the Supreme Court compounded its error in Davis. Alexander v. Choate involved Tennessee’s decision to address financial shortfalls by cutting back the number of days in the hospital available annually on its Medicaid program.[4] The decision set forth an ethically important standard: states must provide people with disabilities “meaningful access” to public services. However, the Court determined that this standard had been met: the state provided meaningful access to the benefit it defined—fourteen days in the hospital. So, the Court reasoned, the state had not discriminated, even though people with disabilities might be disadvantaged by the limitation. In so reasoning, the Court viewed the petitioners as asking for an unreasonable accommodation in the form of “affirmative action” that would give each the full amount of healthcare they needed, even though other Medicaid recipients did not receive this privilege. But here, the Court confused accommodations with modifications. The Choate petitioners were not asking for individually tailored healthcare. Instead, the petitioners were asking for a modification in the structure of the Medicaid program so that the costs of austerity might be distributed more equitably.

The confusion matters ethically, too. Accommodations—as the analogy to affirmative action suggests—may be construed as special privileges and as unfair to those who do not receive them. Conversely, when accommodations are misconstrued as modifications, the result may be the judgment that people are asking for inappropriate fundamental alterations in programs, as Davis was misunderstood to be asking to graduate as a nurse without any clinical training. In the context of ID and COVID-19, disentangling accommodations from modifications will be critical to understanding whether what is needed is a readjustment of state programs or public accommodations in a manner that can be fair to people with ID (a modification) or an individualized adjustment (an accommodation) that might pose undue risks to the individual or to others.

ACCOMMODATIONS AND MODIFICATIONS: CONSIDERING THE COSTS

In order to continue to benefit from public services or to enjoy public accommodations on a basis equal to others, some people with ID will require individualized accommodations during COVID-19 .[5] These include accommodations for adaptive communication, support during treatment, and care management. Under the law, individuals are only entitled to accommodations that are reasonable. The legal question is whether an individual accommodation such as a support person during treatment would be an undue hardship, a defense that has principally been invoked because of increased costs or risks. The ethical question would be whether any increased costs or risks from in-person contacts would be ethically acceptable. Here, law and ethics are intertwined, with the question being whether what the law might regard as an “undue hardship” tracks what might be regarded as ethically appropriate reasons for refusing to undertake any increased costs or risks. In what follows, we begin by describing several likely forms of accommodations then provide responses to arguments that they may be unreasonable because of their costs or the risks they may pose to others. One ethical conclusion we draw is that increased costs should not be a basis for denying accommodations but that unreasonable risks to others may be—if the assessment of risks is unbiased and based on an individualized assessment. Another is that some program modifications may be required in light of the costs of accommodations and that the increased costs of these modifications should be considered as part of a fair allocation of the overall costs of COVID-19, rather than being seen as a fixed limit on the reasonableness of accommodations.

Many people with ID require adjusted forms of communication to increase their understanding. With COVID-19, it may be difficult for people with ID to understand the need for social distancing, hand-washing, or different routines. Communication adaptations may include simple language, repeated explanations, pictures or videos, or support persons to help interpret complex information. Some of these forms of adaptive communication, especially those requiring in-person support, may be more difficult if social distancing is required to prevent COVID-19 spread. Yet the failure to provide adaptive communication might leave people with ID not only unable to enjoy some of their frequent daily activities but also lonely and frightened. It may be possible to address some individual needs by increased and imaginative use of technologies that do not require in-person contact. Just as Zoom and WebEx have become common modes of telecommuting, so robots and video images may be designed to soothe, instruct, or entertain people with ID who must isolate for their protection or the protection of others.

More generally, the need for support persons may be different and greater during COVID-19. While social distancing is in effect, routines will be disrupted. Staying home rather than enjoying favorite outings, day-center activities, or vocational training will be difficult. People who are working may be laid off or unable to go to work because of increased health risks. Public transit—an often-necessary mode of transportation for people who cannot get driver’s licenses—may be disrupted or more dangerous to use because of risks of infection. All of these disruptions may alter and intensify personal support needs.

Support needs may also be intensified in order to protect people with ID from putting themselves or others at risk. People with ID may have difficulty recognizing or communicating symptoms. They may be at greater risk of infecting others who live with them if their illness remains undiagnosed. They may have difficulty understanding the need to wear masks or how to do so correctly. They may require support in handwashing or other modes of personal hygiene. As people with ID are unlikely to live alone, supports for them may be critical to reducing infection spread to others. These are all accommodations that may matter to the ways in which people with ID receive contingency care in pandemic conditions.

These accommodations will increase costs, and the question is whether these costs are reasonable or an undue hardship. Answering this question requires understanding some of the policy determinations that are currently in place. Individuals with ID likely receive many of these services under Medicaid “home and community-based services” (§1915) waiver programs designed to allow people to receive a variety of medical and non-medical services to allow them to live in their homes or communities rather than in institutions. For approval, these waiver programs must demonstrate cost-neutrality to the federal government. States may exclude individuals from their waiver programs if they are likely to have home- and community-based service expenditures that are higher than their costs in an institution. As a result—and also due to state fiscal constraints—these programs typically impose significant cost constraints, including long waiting lists, restrictive eligibility requirements, and service unit limitations.[6] As state revenues contract, and service needs expand, the impact of cost constraints may become more severe. Already limited by cost controls, waiver programs may simply not have the resources to expand supports to accommodate needs during COVID-19.

Ethically, we argue, the conclusion should be just the reverse; program modifications may be needed for reasons rooted in both non-comparative and comparative justice. Non-comparatively, the problem is whether individuals with ID will be able to meaningfully access benefits to which they are entitled without support. Here, meaningful access to healthcare is a good example. People who do not recognize COVID-19 symptoms—but who might do so with support—will not identify the need to access healthcare. People who cannot communicate their symptoms may go longer without care and be far sicker if and when they do access care. Without support, they also may have more difficulty in tolerating what is involved in care, especially in the unfamiliar setting of a hospital. Isolation is difficult for everyone, but even more distressing for people who lack full understanding of why it is needed. Absent support, therefore, it is arguable that in a number of ways people with ID may not have meaningful access to healthcare for COVID-19.

Comparatively, expenditures by the federal and state government are vastly expanding to meet many other needs related to COVID-19. If the supports required by people with ID are not increased at least in a manner that is fair, these individuals will be subject to comparative injustice. Yet, aid programs such as the CARES Act do not provide any increased funding for Medicaid—indeed, state Medicaid expenditures are specifically designated as ineligible for CARES Act funding (USDT 2020). From this comparison, however, it does not follow that everyone should get all of the supports that they need—that would be to confuse accommodations with modifications. Rather, there should be modifications in funding for programs such as §1915 waivers to ensure that they receive their fair share of resources. Further consideration might be directed towards how to allocate additional funds for support, including whether they should be prioritized to services that reduce disease spread or individual distress, or that attempt to improve meaningful access to care.

ACCOMMODATIONS AND MODIFICATIONS: CONSIDERING THE RISKS

Risks may differ from costs, however. Arguably, with risks the undue hardship analysis should be whether the risks are minimally acceptable rather than whether they are fairly allocated. Here, our claim is that fairness does matter, at least insofar as it would be unfair to accept risks for others that are not similarly accepted for contingency care of people with ID. Many groups of people may be affected by COVID-19 risks associated with people with ID: people with ID themselves, people with whom they live, support persons, other patients receiving care, and healthcare providers treating people with ID who become infected with COVID-19.

We have already discussed how accommodations such as communication aids actually may mitigate some risks to people with ID by identifying the need for treatment, enabling people with ID to engage in social distancing or take other precautions against disease spread. These accommodations may, however, increase risks because they involve increased contacts with support persons. These risks presented by increased needs for contacts with support persons can and should be mitigated in the same way that other risks from COVID-19 are mitigated for people who live in group homes or other congregate living settings. Mitigation measures may include individual accommodations such as allowing trusted family members to provide increased support. Accommodations might also include allowing individuals to receive services in their homes so that they can return home for the duration of the pandemic, reducing risks to themselves as well as other residents, who may benefit from facilities becoming less fully occupied.

Some of these accommodations may be facilitated by policy modifications such as allowing family members to receive increased pay as caregivers.[7] Reductions in waiting lists for home- and community-based services are also policy modifications that might reduce risks to people with ID living in nursing homes or other congregate settings. Even if only for the duration of the COVID-19 pandemic, these temporary reductions might allow more people to move out of larger care facilities and return to their families, if they wish to do so. Policies such as health checks and sick leave for caregivers should also be implemented to reduce risks both to themselves and to those for whom they provide care.

Some support workers may be more willing than others to take risks associated with caring for people with ID during the COVID-19 pandemic. Family support workers, for example, may be more willing to take risks for their loved ones. Some of the changes in policies for paying these workers mentioned above may help shift support work to those who voluntarily assume it, as may changes in sick leave, pay, or protections for care workers. These policy changes, while not eliminating risks, at least attempt to increase the likelihood that people who take the risks are not compelled by their own dire circumstances to do so. To the observation that these forms of risk-mitigation may increase costs, we would make the same point as made above: that as modifications these increased costs should not be viewed as unfair privileges but as part of overall fair distribution of the increased resources being devoted to alleviating impacts of the pandemic.

Perhaps the most difficult ethical problem about the ethics of risks involves the potential of increased risks to others in healthcare facilities, including other patients and healthcare personnel caring for people with ID who become ill with COVID-19. To lower risks to hospital personnel and patients, hospitals have implemented strict no-visitors policies with limited exceptions. However, because hospital care and isolation may be particularly disturbing for people with ID, some policies do make exceptions to allow support persons into the hospital. For example, the University of Utah’s “no visitors” policy contains one-visitor exceptions for patients with disruptive behavior, in which a family member is key to their care, and patients who have altered mental status or developmental delays (where caregiver provides safety/information) (University of Utah Health 2020). But such policies are not uniform; for example, Connecticut’s no-visitors guidance for hospitals reportedly does not have an explicit exception for persons with disabilities who live at home (Abrams 2020). To the extent that hospitals allow visitors for other persons, such as partners in childbirth or family members of patients near death, we would argue, it is unfair to fail to allow similar visitor policies for persons with ID who may have increased difficulty with hospital care.

Finally, persons with ID may have more intense care needs than others who become ill with COVID-19, including longer hospital stays and more intense nursing care. A particular concern for healthcare workers is that persons with ID may require more sedation to deal with the hospital environment and thus potentially have increased needs for intubation. Intubation is one of the riskiest procedures for healthcare workers. Here, we would argue that general principles regarding risky care should be applied, in the same way they are for people who do not have ID. One recent ethical framework recommends that when benefits to patients are minimal, risky procedures such as cardiopulmonary resuscitation may be withheld (Kramer, Lo, and Dickert 2020). This framework also cautions that estimations of patient benefit must be evidence-based and free from the kinds of bias that we detailed in the beginning sections of this article, such as importation of quality of life judgments. Applying this framework would lead to the conclusion that if the benefits of resuscitation would justify providing it for patients without ID, resuscitation should also be provided for patients with ID.

CONCLUSION

In this article, we have sought to address some of the less-discussed problems of justice involving people with ID confronted by COVID-19. We have argued that quality of life considerations should not come into play for persons who are capable of having subjectively based quality of life judgments made regarding them. For such persons with ID, even severe ID, any judgments must be evidence-based and free from bias. We have then argued that justice may require both individual accommodations and policy modifications to address the impacts of the COVID-19 pandemic in this population.

REFERENCES

Abrams, Abigail. 2020. “‘This Is Really Life or Death.’ For People with Disabilities, Coronavirus Is Making It Harder Than Ever to Receive Care.” Time, April 24. Accessed May 5, 2020. https://time.com/5826098/coronavirus-people-with-disabilities/.

ADAP (Alabama Disabilities Advocacy Program). 2020. “Complaint of Alabama Disabilities Advocacy Program and The Arc of the United States.” March 24. Accessed May 5. https://www.centerforpublicrep.org/wp-content/uploads/2020/03/AL-OCR-Complaint_3.24.20.docx.pdf.

AAIDD (American Association of Intellectual and Developmental Disabilities). 2010.

Intellectual Disability: Definition, Classification, and Systems of Supports, 11th Edition.

APA (American Psychiatric Association). 2013. Diagnostic and Statistical Manuel of Mental

Disorders, 5th Edition. Washington, DC: APA. Anderson, Ryan T., Charles Camosy, Margaret Chisolm, et al. 2020. “Moral Guidance on Prioritizing Care During a Pandemic.” Public Discourse, April. Accessed May 5, 2020. https://www.thepublicdiscourse.com/2020/04/62001/.

Antommaria, Armand H. Matheny, Tyler S. Gibb, Amy L. McGuire, et al. 2020. “Ventilator

Triage Policies During the COVID-19 Pandemic at U.S. Hospitals Associated with Members of the Association of Bioethics Program Directors.” Annals of Internal Medicine. Published online April 24. https://annals.org/aim/fullarticle/2765364.

Campbell, Stephen M., and Joseph A. Stramondo. 2017. “The Complicated Relationship of

Disability and Well-Being.” Kennedy Institute of Ethics Journal 27 (2): 151–84.

Center for Public Integrity. 2020. “State Policies May Send People to the Back of the Line

for Ventilators.” April 8. Accessed May 5, 2020. https://publicintegrity.org/health/coronavirus-and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of-the-line-for-ventilators/.

CPR (Center for Public Representation) et al. 2020. “Evaluation Framework for Crisis Standards of Care Plans.” Accessed May 5, 2020. [online document since removed].

Chakraborty, Nandini, and William J. Creany. 2006. “Do Not Resuscitate Decisions in

Continuing Care Psychiatric Patients: What Influences Decisions?” Psychiatric Bulletin 30: 376–78.

Coaston, Jane. 2020. “We’re Being Punished Again: How People with Intellectual Disability are

Experiencing the Pandemic.” Vox. April 9. Accessed May 5, 2020. https://www.vox.com/2020/4/6/21200257/disabilities-coronavirus-group-homes-isolation-policy.

DREDF (Disability Rights Education & Defense Fund). 2020. “Preventing Discrimination in the

Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis of Disability.” March 25. Accessed May 5, 2020. https://dredf.org/wp-content/uploads/2020/03/DREDF-Policy-Statement-on-COVID-19-and-Medical-Rationing-3-25-2020.pdf.

Emanuel, Ezekiel J., Govind Persad, Ross Upshur, et al. 2020. “Fair Allocation of Scarce Medical Resources in the Time of Covid-19.” The New England Journal of Medicine. Published online March 23. Accessed May 5, 2020. https://www.nejm.org/doi/full/10.1056/NEJMsb2005114.

Francis, Leslie P., and Anita Silvers. 2007. “Liberalism and Independently Scripted Accounts of the Good: Meeting the Challenge of Dependent Agency.” Social Theory and Practice Spring: 311–34.

Hakshi, Sahar. 2019. “Home Sweet Home: The Problem with Cost-Neutrality for Older Americans Seeking Home-and Community-Based Services.” Administrative Law Review Accord 5: 25–51.

HHS OCR (Health and Human Services Office for Civil Rights in Action). 2020. “Bulletin: Civil Rights, HIPPA, and the Coronavirus Disease 19.” March 28. Accessed May 5, 2020. https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf.

IM (Institute of Medicine). 2009. “Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report.”Edited by Bruce M. Altevogt, Clare Stroud, Sarah L. Hanson, et al. Washington: National Academies Press. Accessed online May 5, 2020. https://www.ncbi.nlm.nih.gov/books/NBK219952/#ddd00012.

Kanne, Steve. 2013. “Diagnostic Overshadowing.” In Encyclopedia of Autism Spectrum Disorders, edited by Fred R. Volkmar. New York: Springer.

Kramer, Daniel B., Bernard Lo, and Neal Dickert. 2020. “CPR in the Covid-19 Era—An Ethical Framework.” New England Journal of Medicine. Published OnlineMay 6. Accessed May 10, 2020. https://www.nejm.org/doi/full/10.1056/NEJMp2010758.

NCD (National Council on Disability). 2019. Medical Futility and Disability Bias: Part of the Bioethics and Disability Series. Washington: National Council on Disability. Accessed May 5, 2020. https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf.

Ne’eman, Ari. 2020. “I Will Not Apologize for My Needs.” New York Times, March 23. Accessed May 5, 2020. https://www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html?searchResultPosition=1.

Ng, Terence, Charlene Harrington, MaryBeth Musumeci, and Erica L. Reaves. 2015. “Medicaid Home and Community-Based Services Programs: 2012 Data Update.” Kaiser Family Foundation. Nov. 3. Accessed May 10, 2020. https://www.kff.org/report-section/medicaid-home-and-community-based-services-programs-2012-data-update-eligibility-and-cost-containment-policies-used-in-medicaid-hcbs-programs-in-2014/view/print/.

Peña-Guzmán, David M., and Joel Michael Reynolds. 2019. “The Harm of Ableism: Medial Error and Epistemic Injustice.” Kennedy Institute of Ethics Journal 29 (3): 205–42.

Putman, Michael S., Hyo Jung Tak, Farr A. Curlin, and John D. Yoon. 2016. “Quality of Life and Recommendations for Further Care.” Critical Care Medicine 44 (11): 1996–2002.

Sarmah-Hightower, Satta. 2019. “Yes, a Family Member Can Get Paid to be a Caregiver. Here’s How.” Jan 30. Accessed May 5, 2020. https://www.care.com/c/stories/14970/how-to-get-paid-to-be-a-family-caregiver/.

Shea, Matthew. 2019. “The Quality of Life is Not Strained: Disability, Human Nature, Well-Being, and Relationships.” Kennedy Institute of Ethics Journal 29 (4): 333–66.

Kon, Alexander A., Eric K. Shepard, Nneka O. Senderstron, Sandra M. Swoboda, Mary Faith Marshall, Barbara Birriel, and Fred Rincon. 2016. “Defining Futile and Potentially Inappropriate Interventions: A Policy Statement From the Society of Critical Care Medicine Ethics Committee.” Critical Care Medicine 44 (9): 1769–74.

State of Alabama Department of Public Health. 2020. Crisis Standards of Care Guidelines. Accessed February 28. [online document since removed].

Stramondo, Joseph. 2020. “COVID-19 Triage and Disability: What NOT to Do.” March 30. Accessed May 5, 2020. http://www.bioethics.net/2020/03/covid-19-triage-and-disability-what-not-to do/?fbclid=IwAR1bWRFHA58cveNO4SBvQXEca_sLQSAeRLFOUIz6MIM5pjaH2uwRfkqPvsQ.

The Arc. 2020. “HHS-OCR Complaints Re COVID-19 Treatment Rationing.” March 23. Accessed May 5, 2020. https://thearc.org/resource/hhs-ocr-complaint-of-disability-rights-washington-self-advocates-in-leadership-the-arc-of-the-united-states-and-ivanova-smith/.

Turk, Margaret A., Scott D. Landes, Margaret K. Formica, and Katherine D. Goss. 2020. “Intellectual and Developmental Disability and COVID-19 Case-Fatality Trends: TriNetX Analysis.” Disability and Health Journal. Accessed June 12, 2020. https://www.sciencedirect.com/science/article/pii/S1936657420300674.

USDT (United States Department of the Treasury). 2020. “Coronavirus Relief Fund Guidance for State, Territorial, Local, and Tribal Government.” April 22. Accessed May 5, 2020. https://home.treasury.gov/system/files/136/Coronavirus-Relief-Fund-Guidance-for-State-Territorial-Local-and-Tribal-Governments.pdf

University of Utah Health. 2020. “Temperature Screening and Visitor Policy.” Accessed May 5, 2020. https://healthcare.utah.edu/coronavirus/visitor-guide.php.


[1] See Coaston (2020) for perspectives on the pandemic from people with ID.   

[2] This minimalist assumption is, we think, consistent with both hedonistic and at least some perfectionist accounts of the person’s good. Hedonistic accounts assume at least some capacity to experience pleasure, pain, or happiness. Perfectionism of the sort defended by Shea (2019) relies on an account of human flourishing that involves at least some elements of subjectivity, such as the ability to engage in relationships and experience social thriving.

[3] 442 U.S. 397 (1979).

[4] 469 U.S. 287 (1985).

[5] Beyond the distinction between accommodations and modifications, we set aside here many other complex questions about the structure of anti-discrimination law but note them briefly here for reference. The Rehabilitation Act prohibits discrimination on the basis of disability in federally funded programs or activities, 29 U.S.C. § 794; § 1557 of the Affordable Care Act explicitly incorporates this ground of prohibited discrimination in any federally funded health care. Under the Rehab Act, people with disabilities must have “meaningful access” to federally funded programs or activities for which they are qualified, Alexander v. Choate, 469 U.S. 287 (1985). Title II of the ADA, applying to public services, programs, or activities, provides that it is discrimination to exclude or deny benefits to any individual with disabilities meeting essential eligibility requirements with or without auxiliary aids or reasonable modifications to rules, policies, or practices, 42 U.S.C. §§ 12132, 12131(2). Title II does not explicitly state an undue hardship defense, although one has been incorporated into the understanding of what modifications are reasonable, e.g., National Federation of the Blind, Inc. v. Lamone, 2020 WL 618674 (D. Md. Feb. 10). Title III of the ADA, applying to public accommodations (which include medical facilities and social service establishments, 42 U.S.C. § 12181(7)(F), (K), prohibits discrimination “on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation,” 42 U.S.C. § 12182(a). Accommodations must be provided to individuals in the “most integrated setting” that is appropriate, 42 U.S.C. § 12182(b)(1)(B). Failures to make reasonable modifications are discriminatory, unless the modifications would be fundamental alterations of the nature of the goods, services, facilities, privileges, advantages, or accommodations, 42 U.S.C. §12182(b)(2)(A)(ii). Failures to provide auxiliary aids and services is discrimination, unless the aids or services would fundamentally alter the nature of the good, service, facility, privilege, advantage, or accommodation, or would be an undue burden, § 42 U.S.C. § 12182(b)(2)(A)(iii). The Title III regulations define “undue burden” as “significant difficulty or expense” and list as factors to be considered in this determination the nature and cost of the needed action, the overall financial resources of the site, and legitimate safety requirements among other factors, 28 C.F.R. § 36.104. These complex differences have been largely bypassed in court decisions applying the same standards under the Rehab Act, ADA Title II, and ADA Title III.

[6] See Ng et al. (2015) and Hakshi (2019).

[7] Family members can be paid caregivers, but with significant limits. For example, one recent report indicates that only twelve states permit legal guardians to be paid caregivers. This would preclude parents who have become legal guardians of their adult children with ID from being paid. See Sarmah-Hightower (2019).

Special Issue, Uncategorized

Incarceration, COVID-19, and Emergency Release: Reimagining How and When to Punish

Lauren Lyons

[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]

ABSTRACT. The wide-ranging effects of the COVID-19 pandemic have amplified social inequalities and revealed vulnerabilities in public systems. These dual effects are especially salient in the context of criminal justice systems, and activists and policymakers have called for reconfiguring justice system practices in response. This paper discusses and defends one of these proposals: rapidly reducing the number of people currently incarcerated by releasing people from jails and prisons. Drawing on moral and political philosophy and criminal law theory, I provide a rigorous case for why it is morally unjustified to continue to incarcerate people as usual under present circumstances—this position is intuitive to many and already reflected in emergency policies in jurisdictions worldwide. The paper proceeds by way of two arguments. First, I argue that we ought to release people from jails and prisons to prevent meting out disproportionately severe punishments, which are unjustified on standard theories of punishment. The second argument appeals to what I call the public interest constraint on criminal law policy: defending the idea that we ought not make use of the instruments of the criminal law if the downstream consequences of doing so run contrary to public welfare and wellbeing or undermine the provision of substantive common goods. I argue that circumstances related to the coronavirus pandemic trigger the constraint. Though the idea that we ought to take broad social costs into account in designing criminal justice policy may seem intuitive, it has radical implications for thinking about decarceration and the ethics of justice system practices during the coronavirus pandemic and beyond. In the last part of the paper, I propose and discuss three concrete policies that work to mitigate some of the potential negative consequences of emergency release.

The effects of the present COVID-19 crisis transcend national and social borders, requiring all of us to adapt to ever-changing, unprecedented circumstances. While in some respects these experiences are shared, the impact of the crisis has been disproportionately harmful for those who were already socially vulnerable: low-income people and workers who are precariously employed, people with disabilities and chronic health issues, unhoused people, people who depend on now-defunct public services, and, as will be the focus of this paper, incarcerated people.

In response to the pandemic, state, local, and federal governments have enacted policies that would be politically unthinkable in normal circumstances. The US federal government, for instance, passed a $2 trillion relief bill, the largest stimulus package in the country’s history. At the same time, local governments have enforced unprecedented social distancing measures in response to stay-at-home orders. In these domains and others, the crisis has recalibrated the realm of political possibilities.

Correspondingly, given the unique, serious threat of illness outbreaks in jails and prisons, the coronavirus pandemic has sparked the proposal and implementation of new, radical changes to criminal justice system practices. In attempts to reduce jail and prison admissions, many prosecutors, citing their discretion, have opted to decline to prosecute many low-level crimes. There has also been pressure to rapidly decrease the number of people who are currently incarcerated. Some have proposed temporarily releasing people convicted of low-level offenses, while more radical voices have called for shutting down jails and prisons altogether.

Broadly speaking, the case of incarceration during COVID-19 offers an extreme example of how socially vulnerable people are especially burdened by disasters and crises. Correspondingly, the case invites us to radically rethink present policies. Reimagining the design of our criminal justice system is especially relevant in the context of ongoing demands for decarceration amidst mass #blacklivesmatter protests across the United States in response to the murder of George Floyd and other recent instances of police violence. By centering public health and safety when designing criminal justice policy, emergency release and other unprecedented strategies can offer a blueprint for reducing the size and scope of the criminal justice system during the present pandemic and beyond.

The moral impetus to change justice system practices because of the threat of the pandemic is felt worldwide. The Prison Policy Initiative reports that Turkey has reduced its prison population by 90,000, or 31 percent, since the onset of the crisis (Widra and Wagner 2020). Iran has followed suit in reducing its prison population by 70,000, or 29 percent (ibid). Other countries have implemented more modest reductions. In the United States, while local governments have made efforts to reduce jail populations, state and federal prison populations have remained staggeringly high. The number of people incarcerated in jails is estimated to have decreased by 25 percent since the start of the crisis, with jurisdictions implementing measures to release people charged with low-level crimes, awaiting trial, close to finishing their sentences, as well as elderly people and those with underlying health issues. On the other hand, the Federal Bureau of Prisons and several states, including South Carolina, Mississippi, Alabama, Arizona, and Pennsylvania have only reduced prison populations by less than 3 percent (ibid).

This paper discusses and defends the practice of releasing incarcerated people from jails and prisons in the face of the present pandemic. Drawing on moral and political philosophy and criminal law theory, I provide a rigorous case for an idea that is intuitive to many and already realized in public policies in several jurisdictions: that it is morally unjustified to continue to incarcerate people as usual under present circumstances, and that we ought to implement policies to radically reduce the number of people currently incarcerated.

I provide two arguments in defense of this position. The first, the proportionality argument, maintains that we ought to release people from jails and prison in order to avoid their punishments becoming disproportionately severe and, correspondingly, unjustified on standard theories of the justification of punishment. The second argument appeals to what I call a public interest constraint on criminal law policy: defending the idea that we ought not make use of the instruments of the criminal law if the downstream consequences of doing so run contrary to public welfare and wellbeing or undermine the provision of substantive common goods. Though the idea that we ought to take broad social costs into account in designing criminal justice policy may seem intuitive, it has radical implications for thinking about institutional design during COVID-19 and beyond; I discuss these issues further in conclusion of the paper.

I conclude the discussion by identifying some of the relevant classes of costs and benefits associated with implementing emergency release policies that we ought to take into account in applying the public interest constraint. In response to those considerations, I propose three concrete policy solutions that work to mitigate potential negative consequences of early release: the creation of emergency parole boards, the provision of testing for potentially-affected people (or, alternatively, non-carceral quarantine provisions), and comprehensive reintegration support for people released from jails and prisons.

While the proportionality argument is based in generally accepted justificatory standards in criminal law theory, the discussion of the public goods constraint asks that we reorient our normative theorizing by taking a broader set of costs into account in designing criminal law policy. Note that the arguments need not be accepted in tandem; I imagine many readers will be on board with the first but more hesitant about second.

Though my discussion centers on the case of the criminal justice system in the United States, since it is the context with which I am most familiar, the arguments are certainly applicable elsewhere. Moreover, the issues discussed here will largely apply to immigration detention and ICE (Immigration and Customs Enforcement) enforcement activities too, though jails and prisons are my focus.

THE PROPORTIONALITY ARGUMENT

Here are some relevant facts about the issue in the US context: Prior to the coronavirus pandemic, there were 2.3 million people in jails and prisons across the country. Many of these people, approximately 470,000, were awaiting trial and thus not yet convicted of a crime (Sawyer and Wagner 2020).

There is consensus among experts that elderly people and people who have preexisting health issues—like chronic lung disease, moderate to severe asthma, diabetes, kidney or liver disease, heart conditions, and immunocompromised people—are most likely to become severely ill if they are infected with COVID-19. Incarcerated people are disproportionately likely to have these serious health issues, which are often exacerbated by virtue of incarceration (Binswanger et al. 2012). Moreover, a substantial proportion of people incarcerated in the United States are elderly. The number of older incarcerated people has increased rapidly in recent years—a product of draconian sentencing and strict parole policies. A report by the Osborne Association predicts that by 2030, one third of the incarcerated population in the US will be over fifty (The Osborne Association 2018).

At the same time, prisons and jails have limited medical facilities that are ill-equipped to deal with COVID-19 outbreaks. Moreover, given the physical structure of jails and prisons, it is especially difficult to implement social distancing measures and contain the spread of communicable diseases. In an interview reported in The Intercept, a man incarcerated in a maximum-security facility in New York State remarked, “There’s no such thing as social distancing in prison. … How can an incarcerated individual maintain social distancing in a population of over 2,000? With 240 men to a block, minus the guards? With every man dwelling on all sides of one another, constantly?” (Speri 2020).

As a result of these conditions, many jails and prisons in the US and elsewhere have become hotspots for the virus. In May 2020, the New York Times reported that correctional facilities comprise ten of the fifteen “clusters” with the largest number of reported infections in the United States (The New York Times 2020). The Marion Correctional Institution in Marion, Ohio offers an especially grim example. By mid-May, over 2,000 people, 80 percent of those incarcerated there, have tested positive (The New York Times Editorial Board 2020). 154 members of the 350-person staff tested positive as well (ibid.).

As of May 2020, the Vera Institute of Justice reports that there are 20,000 confirmed cases of COVID-19 in jails and prisons and 325 related deaths (Vera 2020). The number is likely much higher—it is difficult to know the scale of the problem because, even in the United States, data is decentralized.

Given that people of color and members of other socially disadvantaged groups are vastly overrepresented at all levels of the criminal justice system, including in jails and prisons, the crisis of COVID-19 and incarceration is starkly racialized as well; the pandemic inherits and compounds existing disparities in the justice system. Correspondingly, quelling ongoing outbreaks in jails and prisons is a matter of substantive racial justice and justice for members of intersectionally oppressed groups. As I discuss in later in the paper, the impact of the criminal justice system in “normal” circumstances ought to be worrisome for prioritarians or anyone concerned with the wellbeing of socially disadvantaged people, given that the system’s structural features work to make those who are already poorly off worse off yet. To the extent that the COVID-19 crisis intensifies the effects of incarceration to make people even worse off, it is a disaster for social equality.

My concern in this section of the paper is whether the punishments endured by those incarcerated under present, non-ideal circumstances related to the COVID-19 epidemic can be morally justified. Punishment, by definition, involves the infliction of burdensome sanctions and deprivations. Punishment also expresses censure, or public condemnation, of people’s actions. In order for the state to inflict deprivations on its citizens, moral philosophers have generally agreed that legal punishment requires robust moral justification. Though there are a variety of approaches to justifying legal punishment, they fall into two major camps: retributivism and consequentialism.

Retributive justifications of punishment draw on the notion of desert, requiring that the state be justified in inflicting punishment X on person A. More specifically, A deserves X because of wrongdoing Y. For retributivists, punishment is a deserved response to wrongdoing. In addition to justifying why we can punish at all, retributivists must also consider how much punishment the state is justified in inflicting. There, they draw on principles of proportionality, which require that the severity of a punishment be a function of the seriousness of the crime. Less serious crimes merit less severe punishments, and vice versa.

Consequentialists require not that punishment is a deserved response to wrongdoing, but rather that we are justified in punishing people because doing so ultimately yields positive consequences. Correspondingly, consequentialists usually appeal to punishment’s ability to rehabilitate and incapacitate people, and to deter them—both the person punished and the general public—from committing (future) crime. Thus, punishment is justified because, though it involves imposing harm, it ultimately curbs crime and produces net good. Consequentialist theories of punishment must also account for severity, since punishment is only justified to the extent that it achieves the good at which it is aimed. Hence, consequentialists care about proportionality, too, albeit indirectly.

For both types of theories, then, whether some instance of punishment is justified depends on its severity. But how do we measure severity? Philosophers have proposed different metrics. Some have suggested measuring punishment severity objectively, by considering the extent to which a person is made worse off by virtue of being punished. Andrew von Hirsh, for instance, suggests measuring punishment severity in terms of how it impacts people’s “living standards,” or the resources and capabilities necessary to achieving an acceptable quality of life (1998, 60). An alternative approach, endorsed by Adam Kolber and others, is to measure punishment severity subjectively—in terms of the actual amount of suffering the person being punished endures (2009). Kolber’s approach obliges us to account for the psychological effects of punishment in addition to its observable, objective effects on wellbeing.

Drawing on the standard conceptions of punishment justification and metrics of punishment severity, I’ll provide a relatively simple argument for the unjustifiability of incarcerating people during the present pandemic. Let’s start by assuming that under normal circumstances—absent issues stemming from COVID-19—people were sentenced proportionally and that their punishments were justified.[1] We can then apply the following to principles to those cases:

PROPORTIONALITY-JUSTIFIABILITY: Only proportionately severe punishments are justified, and substantially increasing the severity of instances of justified punishment makes those instances unjustified.

COVID-19 SEVERITY: In many cases, circumstances related to COVID-19 substantially increase punishment severity.

The two principles lead us to the following conclusion:

COVID-19 JUSTIFIABILITY:In many cases, instances of punishment (given the circumstances of COVID-19) are unjustified.

Accepting the conclusion means that if we continue incarcerating people as normal under present circumstances, we will effectively enact many unjustified punishments. This outcome should clearly be avoided.

The rest of this section is structured as follows: first, I will defend PROPORTIONALITY-JUSTIFIABILITY and COVID-19 SEVERITY, the former discussion being much briefer than the latter. Then, I will consider and respond to an objection to COVID-19 SEVERITY: that we need not account for harms related to the pandemic in assessing punishment severity, given that they were not intentionally imposed on people by the legal system or its actors.

PROPORTIONALITY-JUSTIFIABILITYreflects the consensus among criminal law theorists: that punishment is only justified if it is appropriately severe. Correspondingly, inappropriately severe punishments are unjustified. We can understand appropriateness or proportionality in terms of retributivist and consequentialist theories of punishment.

For the retributivist, the severity of the punishment becomes disproportionate when compared to the seriousness of the crime. If the seriousness-severity calculus was justified at the outset, making a punishment for the same crime more severe disrupts it, in turn making this instance of punishment unjustified. For the consequentialist, the potential goods associated with justified punishment outweigh the harm it inflicts on individuals; similarly, increasing harms on individuals throws a wrench into the cost-benefit analysis, making previously justified harms potentially unjustified.

We can understand COVID-19 SEVERITYin terms of the accounts of punishment severity described above and the conditions in prisons and jails during the pandemic. I mentioned two possible metrics for evaluating severity above: (i) effects on “living standards” and (ii) subjective experiences of suffering. The present pandemic makes punishments more severe in both of these senses. On the living standard view, punishments are more severe to the extent that they threaten the capabilities and resources necessary to have a reasonable standard of life. Health is clearly among the relevant capabilities; long term effects on one’s health (and obviously, death) make it more difficult or even impossible for people to have a high quality of life. Even in minor cases, contracting an illness makes people temporarily worse off; in severe cases, those effects are even more pronounced.

The subjective case is analogous. Though subjective and objective effects can be difficult to pick apart, it is clear that serious illness makes people suffer, subjectively speaking. Moreover, the constant stress of living in a high-risk environment related to ever-present risk of contracting the disease can lead to mental anguish as well. This stress is compounded by being unable to visit with family, many of whom are suffering due to the virus at home. One person incarcerated in New York during the pandemic reported, “I haven’t been this stressed out since I was on trial … it’s the fear of calling home and finding out someone else I held close to the heart passed away. It’s the fear of never being able to see someone I love ever again and not being able to pay my proper respects” (Speri 2020).

Note that circumstances related to COVID-19 will make people’s punishments more severe in many, but not all cases. Some people who are incarcerated amidst the current crisis may not experience any increase in punishment severity because of present conditions. There are two variables that increase the possibility that cases of punishment will become disproportionately severe: (i) the likelihood that people will become seriously ill if they contract the virus and (ii) the severity of the punishment they were assigned in the first place. Though people contracting communicable diseases in part because of their incarceration is morally worrisome in all cases, it is especially so when people are serving short sentences for minor crimes and are at a high-risk of dying if they do become infected. As I will discuss in the last section of this paper, these variables ought to be taken into account in designing emergency policies.

The issue of the disproportionality is especially worrisome for those who are detained pretrial. People detained pretrial have not been deemed deserving of punishments at all since they are not yet convicted. Putting people at a high risk of becoming seriously ill despite their legal innocence requires robust moral justification. We cannot appeal to desert here since people are legally innocent and are thus left with consequentialist justifications, and more specifically, incapacitation. As I will discuss in the following section, it seems that we need to carefully evaluate whether people pose acute threats to public safety in making judgements about the justifiability of incarcerating them under present circumstances.

I’d now like to consider an objection to the view defended here: that we need not take the harms associated with (potential) COVID-19 infection into account when calibrating punishment severity because those harms are not intentionally imposed by legal system actors.

This objection reflects a commonplace condition that criminal law theorists place on punishment: to count as punishment, a harm or deprivation need be intentional. H.L.A. Hart, for instance, requires that punishment be “intentionally administered” and “deliberate[ly] impos[ed]” (Hart 2008). Correspondingly, criminal law theorists can avoid the burden of justifying the collateral consequences of incarceration or the violence that inevitably takes place in jails and prisons on the grounds that those deprivations are not intended and do not need to be justified as punishment or taken into proportionality calculations. Call this the “Unintentional Objection.”

I will provide a two-fold response to the “Unintentional Objection.” First, I argue that the notion that punishment need be intentional in the first place may be confused, given (a) our intuitions about punishment severity and (b) the lack of clarity about whose intentions matter and what the objects of the relevant intentions are. The second element of the objection is that even if intentions are necessary for punishment, punishment theorists must justify the unintentional consequences of punishment too; thus, even if unintentional, inordinately severe punishments may be unjustified.

Kolber draws on this idea in his “Unintentional Punishment” when he shows that “our intuitions about the severity of punishment take into account more than just intentionally produced hardships” (Kolber 2012, 5). Kolber asks us to imagine a case where two offenders—he calls them Purp and Fore—endure what appear to be identical 3-year prison sentences. However, while the judge who sentenced Purp intended the myriad harms she experienced in prison, the judge who sentenced Fore merely foresaw those harms, only intending that Fore’s freedom of movement be limited. The issue is that if one requires that only intended deprivations be counted when measuring the severity of punishment, then Purp’s punishment was significantly worse than Fore’s. But to any outside observer—and indeed to Purp and Fore themselves—the conditions of their confinement were identical, and their punishments comparably severe.

One way to frame the issue is to note that the intention requirement on punishment puts too much stake in what’s in the heads of decision-makers as opposed to existing institutional practices. As Kolber notes, we intuitively think that “the mental states of their punishers (be they judges, prison personnel, legislators, voters, or some combination of all of these) do not affect the severity of their sentence” (ibid., 16).

The counterintuitive implications in Kolber’s case reflect deeper worries about whose intentions matter in the first place, an issue to which—to my knowledge—no criminal law theorist has managed to respond successfully. Doug Husak describes the problem:

Thus we must decide whose intentions should be taken as decisive in categorizing an expression as an instance of censure. Should we focus on the intentions of legal officials, the beliefs of the person to whom the expression is directed, the public at large, or some other agent(s) altogether? Even if we restrict our attention to the expressions of legal officials—probably the most common answer—we must decide what to say when their intentions diverge. The problem is not simply that of locating a single intention in a legislative body composed of several individuals. Even if this familiar difficulty could be surmounted, the intentions of the legislature and that of a judge (not to mention those of other legal officials) might well differ in a particular case. (2019)

As Husak notes here, even if we can decide whose intentions matter in the first place, we will reasonably select a group of people (as opposed to an individual), which gives rise to another problem: what to do when their intentions diverge.

Another equally concerning worry pertains to what the content of the intention in question is and whether we can even coherently formulate it in the first place. Intentions are typically thought to be propositional attitudes, involving (i) a pro-attitude towards some desirable state and (ii) a belief that a certain action will achieve that desired state. Here, the pro-attitude would be directed towards proportional punishment—i.e., punishment of a specified severity. But given that criminal law theorists differ immensely in their accounts of how to measure severity, there are likely to be huge variations in what intentional infliction means for them; the issue is likely worse for actors in the criminal justice system, given that they may attach disparate objects to the intention. Thus, the problems for the intention requirement may run deeper—is it even coherent to think that we can form an object of intentions to punish?

I think that considering these counterintuitive implications of the intention requirement, and the lack of a clear account of (i) whose intentions matter and (ii) what the intention ought to look like, the case for the intention requirement does not look strong. Further, I think the requirement works to distance us—in our theorizing—from what normally looks like punishment in its lived reality.

But even if one does want to hang on the intention requirement, they cannot avoid the issues of justification upon which this critique rests; in other words, even if one thinks that the allegedly unintended features of incarceration described do not constitute punishment and should not be considered in the proportionality calculus, those foreseen consequences need still be justified somehow. Of course, just because an outcome is not intended but only foreseen does not mean that a foreseen side effect is de facto justified. For instance, if I intend to bake a cake, foreseeing that it would burn down your house if I do, the foreseen consequence of burning down your house is not simply justified because I did not intend it. The same applies to the unintended consequences of punishment.

Kolber defends the view that the state must justify the foreseen consequences of punishment by drawing on what he calls the Justification-Symmetry Principle.

JUSTIFICATION-SYMMETRY PRINCIPLE: any state actor who harms an offender in the name of just punishment must have a justification for doing so if you or I would need a justification for causing the same kind of harm to nonoffenders. (2012)

For Kolber, the state has the same justificatory burdens as individuals; if the state imposes a harm, they, too, like individuals, must justify it. This applies to both foreseen circumstances of punishment, as well as intended consequences. Applying the principle to the case of the pandemic, it is clear that exposing someone to a very high risk of contracting a virus against their will warrants justification.

Further, Kolber notes that if the punishment theorist still wants to maintain that they need not build the justification of foreseen consequences into their theory, theories of punishment become grossly “anemic.” They may defend what Kolber calls a “shadow theory,” wherein the many unintended deprivations associated with incarcerations need be justified not by a theory of punishment, but rather some other additional political or moral theory. Kolber notes that,

this strategy leads to a surprisingly anemic version of retributivism. By claiming that a theory of punishment need not justify a certain purposeful infliction, this strategy implicitly concedes that retributivism cannot, on its own, justify punishment practices like incarceration, because the incarceration of any particular offender will inevitably have foreseen and foreseeable side effects. (ibid., 16)

In other words, the strategy estranges the criminal law theorist from being able to justify anything that looks to be punishment in our present criminal law institutions.

Thus, on one hand, there is reason to doubt that intention should be a necessary condition of punishment in the first place, and if it is, theories of punishment need some account to justify those unintentional harms, or else they run the risk that their theory is too anemic to justify anything resembling punishment under present conditions.

I think these worries should lead us to abandon the intention requirement on punishment severity. But even if we want to hold on to the condition, the unintentional harms associated with incarcerating people during COVID-19 must be justified nonetheless. When we take these nonintentional harms into account, many individual instances of punishment will become disproportionately severe and, since justification requires appropriately severe punishments, unjustified.

If we continue incarcerating people as normal under present circumstances, we will effectively dish out many unjustified punishments. Clearly, we ought to avoid this outcome. One way to do is to implement emergency release policies, which I will describe in more detail in the following section.

THE PUBLIC INTEREST CONSTRAINT

The preceding section made a relatively simple argument from within the bounds of criminal law theory—on standard views of the justification of punishment and metrics of punishment severity, punishing people given the circumstances related to COVID-19 will often be unjustified. This section is more controversial, defending the idea that we ought to take a broader set of factors into account in evaluating the moral justifiability of criminal law policy. This discussion is especially salient in the context of the coronavirus crisis, though the approach works to reorient our thinking about the role of the criminal law more broadly.

My basic argument is that (1) we ought to think about the criminal law as a vehicle for promoting legitimate state interests, and correspondingly, that the justice system must be held to the same justificatory standards as other state institutions. Among these standards is the idea that (2) institutional policies must be in the public interest: public policies and practices are unjustified if they either undermine the wellbeing and welfare of the general public or undermine the provision of common goods (to the extent that those negative effects are not outweighed by comparably positive effects on public welfare or common goods). In the case of the coronavirus crisis, (3) enacting criminal law policy as usual ultimately threatens public welfare and wellbeing and undermines the provision of common goods, triggering the constraint. I will begin with a broad discussion of (1) and (2), moving to consider how the discussion bears on the present crisis (3) at the end of the section.

It is a mistake to think about justificatory questions related to the use of the instruments of the criminal law as existing on some normative island, where all that matters are a limited set of concerns related to interpersonal morality. It is important that we inquire not only about the wrongfulness of acts and the calibration of appropriate punishments but also about the broader unintended downstream consequences of the justice system, including, for instance, its impact on social equality or public health. On my view, in making policy-relevant normative claims in criminal law theory, we should take into account present, non-ideal realities and consider the impact of the criminal law on social goods, broadly construed.

My approach aligns with what has been called a public law conception of the criminal law. Vincent Chiao, who endorses a public law view, notes that the criminal law is

an integral component of society’s basic structure, and should be understood and justified in those terms, regardless of whether it does or does not additionally punish moral wrongdoing as such. (2016, 139)

Anthony Duff endorses a similar view of the criminal law and the state in his Realm of the Criminal Law, requiring that the goal of criminal justice systems be to “help to constitute as well as to sustain what we call the ‘civil order’ of the polity,” where the civil order is conceived as a “set of goals and values through which a polity constitutes itself … as a political community” (2018, 7). Duff maintains that “we must therefore theorize criminal law as part of the institutional structure of the political community…[I]ts institutions must be theorized in terms of their contribution to the polity’s existence and its good” (ibid., 149).

Conceiving of the criminal law as first and foremost a subsidiary of the state and vehicle for promoting its interests has important effects on normative theorizing. Specifically, it leads us to endorse a Justification-Symmetry Principle, not much unlike one defended by Kolber in his discussion of whether the state is justified in imposing unintentional harms on incarcerated people. Remember that Kolber requires that harm imposed by state actors warrants justification if any person, “you or I,” would need justification in imposing that harm (2012). Kolber’s principle requires that we hold criminal law practices accountable to standards outside of the criminal law’s domain; similarly, we may endorse:

CRIMINAL LAW JUSTIFICATION SYMMETRY: criminal law policy ought to be held, at minimum, to the same justificatory standards as other public policy.

The idea here is that the criminal law is not an exceptional moral domain; its institutional practices ought to be accountable to the same moral standards that bear on other public institutions. For instance, if criminal law policies have morally-relevant negative consequences, they need to justify them, in the same way other institutions must. Further, it is plausible that criminal law policy ought to be held to even higher justificatory standards given that the criminal law inherently involves infringements on individual liberties, both in terms of the acts it prohibits and the restrictions associated with legal punishment.

Now, determining the justificatory standards that ought to apply to state institutions is a controversial behemoth of a topic, tied to one’s big-picture views of what justifies the existence of the state and its practices. We can imagine, for instance, a Rawlsian application of CRIMINAL LAW JUSTIFICATION SYMMETRY. For Rawls, institutions are the subjects of inquiry about social justice given that “major social institutions distribute fundamental rights and duties and determine the division of advantages from social cooperation” (Rawls 1971, 6). Rawls gives us two principles of justice that ought to apply to those institutions. First, institutional structures must be compatible with each person having an indefeasible claim to a fully adequate scheme of basic liberties compatible with a similar scheme for others. Second, social and economic inequalities that result from institutional practices are justified if they (i) are attached to offices and positions open to all (Equality of Opportunity) and (ii) are to the greatest advantage to the least advantaged in society (The Difference Principle).

If we accept Rawls’s approach and CRIMINAL LAW JUSTIFICATION SYMMETRY, we ought to hold criminal justice institutions accountable to these principles of justice, too. This has important results. Consider Rawls’s restrictions in light of the fact that socially disadvantaged people are more likely to be involved in the justice system and are usually made worse off by virtue of their involvement. Though more details of the case are needed, it may be that the inequalities generated by criminal justice system practices in general violate the Difference Principle and thus require revision.

Most criminal law theorists would likely accept a version of the CRIMINAL LAW JUSTIFICATION SYMMETRYprinciple. After all, rejecting it would require arguing that criminal law institutions are not sensitive to the same sorts of concerns as other state institutions, which seems implausible. The scope of morally-relevant questions related to criminal justice institutions is often neglected—these institutions are many-noded beasts! From policing to court processes to incarceration, the system presents an array of difficult normative concerns. Among these are questions about what to criminalize, what collateral consequences should be attached to convictions, how the police ought to behave, and when to refrain from using the instruments of the law altogether. How we answer them will have important, morally-relevant effects on individuals and society at large. The institutional architecture of criminal justice systems at all of these levels ought to be accountable to the justificatory standards to which we hold other public policy and take into account the presence of background inequalities. Below I will focus on one crucial node in the justice system apparatus: choices about what to criminalize.

Of course, it is well beyond the scope of this paper to defend a view of the moral limits of public policy. Rather, I want to present what I imagine to be a flexible and relatively uncontroversial constraint on public institutional practices.

THE PUBLIC INTEREST CONSTRAINT: A public institutional policy or practice is unjustified if it undermines the welfare and wellbeing of the general public or undercuts the provision of substantive common goods.

The constraint should be understood in terms of costs and benefits: either that a policy or practice does more harm than good for the welfare or wellbeing of the general public or it undermines the provision of common goods more than it promotes them. The concept of common goods is admittedly obscure. Here I intend to refer to a privileged set of interests that many of us share and that public institutions are tasked with promoting. Waheed Hussain’s Stanford Encyclopedia of Philosophy entry on the topic provides a helpful taxonomy of these.

The interest in taking part in the most choiceworthy way of life (Aristotle Pol. 1323a14–1325b31); the interest in bodily security and property (e.g., Locke 1698; Rousseau 1762); the interest in living a responsible and industrious private life (Smith 1776); the interest in a fully adequate scheme of equal basic liberties (Rawls 1971; 1993); the interest in a fair opportunity to reach the more attractive positions in society (Rawls 1971); and the interest in security and welfare, where these interests are understood as socially recognized needs that are subject to ongoing political determination (Walzer 1983). (Hussain 2018)

I will not defend any fleshed-out conception of the common good in this paper. I hope that the reader will accept the general form of the constraint, filling in the conception of public goods as they like. One may opt to include all concerns listed above, just some of them, or some that aren’t listed. Soon, I will argue in favor of the more modest idea that criminal justice policies that undermine public health, perpetuate inequalities, and communicate a public lack of concern for incarcerated people undermine the provision of common goods.

Together, CRIMINAL LAW JUSTIFICATION SYMMETRY and THE PUBLIC INTEREST CONSTRAINT leave us with the following principle: that criminal justice system practices are unjustified if they undercut substantive common goods, or where the negative effects on substantive common goods are outweighed by the practice’s positive effects on public goods. I take the two principles that yield this conclusion to be fairly uncontroversial, so perhaps the argument is convincing on its own. Moreover, though, the principle aligns with reasonable consequentialist and retributivist approaches to criminal law theory.

The public interest constraint and the idea that criminal law institutions are not immune to the norms that govern other public institutions reflect a consequentialist picture of the justificatory aims of the criminal law, since many of the relevant costs and benefits will likely be factored into consequentialist calculations in the first place. However, the constraint is not straightforwardly consequentialist and ought to be convincing to those who do not endorse that approach. More specifically, I am not committed to the idea that (i) consequences are all that matter or that (ii) all consequences matter. My view is, rather, that in thinking about the criminal law as a political instrument, there are some classes of costs we must care about—specifically, those that have negative effects on substantive common goods and threaten the welfare and wellbeing of the general public.

Those who opt to focus on more narrow aims like retributive justice in approaching justificatory questions about the criminal law ought to be concerned with public goods too. No plausible theory of the criminal law can mandate achieving retributive justice at the expense of all other social goods; rather, retributive justice should be conceived as one good among many. This idea is reminiscent of Chiao’s discussion of the functional priority of cooperative rule enforcement over punishment (2016). My contention is that among the costs that must be considered are those that are relevant to public interests.

This idea is supported by our intuitions in cases where enacting retributive justice (via criminal law policies) clearly runs contrary to public interest:

Expensive Enforcement: suppose that some state is considering whether to criminalize the distribution of some drug C. Drug C is not very popular, though it is harmful; stipulate that because of this, distributing C is wrongful, and people who do it deserve to be punished. However, because of some details about C, detecting people who distribute C is incredibly expensive. In order to detect and prosecute C distributors, the government considering criminalizing C would have to significantly reinvest funds from other social welfare programs: housing, education, etc. Suppose, too, that providing housing, education, and social welfare are in the public interest.

We would need to fill in more details of the case to conclude that the state would be unjustified in criminalizing C; nonetheless, it is clear that public goods must be taken into account in making a decision about C-criminalization, even for a staunch retributivist. Demands of legal moralism cannot trump all other concerns.

Applying the constraint allows us to frame the issue of COVID-19 and emergency release as follows: circumstances related to the present crisis have made it so that the extent to which incarcerating people threatens public welfare and wellbeing and risks undermining important public goods is greater than usual. These negative consequences warrant justification; morality demands that we take them into account in justifying criminal justice system practices. Continuing to incarcerate people as usual will be unjustified if doing so ultimately undermines public welfare or other public goods—if the negative consequences of justice system practices outweigh its public benefits.

Unsurprisingly, working out whether continuing to incarcerate people as usual does ultimately run contrary to public welfare and common goods leaves us with a messy cost-benefit calculus. In what follows, I will try to enumerate some important classes of costs and benefits. I will first consider three classes of negative effects of continuing to incarcerate people as usual that work against public welfare and other common goods. Second, I will consider some of the unwelcome consequences of implementing broad early release policies, considering how we ought to design policies in response to those challenges.

Though I have chosen to focus on the case of early release here, there are analogous reasons in support of changing other criminal justice system practices under present conditions—for instance, declining to prosecute low-level crimes, as many prosecutors have opted to do.

Let’s begin by considering the consequences of not making changes to criminal justice policy in light of the present crisis—continuing to require people to complete their sentences as usual­. I see there being three classes of new costs of continued incarceration that result from maintaining the status quo amidst the present crisis: (i) public health effects, (ii) effects on social equality, and (iii) communicative effects. Importantly, all of these results run contrary to public interest in the sense evoked in the public interest constraint.

Costs of Continued Incarceration

(i) Public health effects

The public health costs of many new COVID-19 infections—resulting in this case, from policy decisions—should be worrisome to everyone. One facet of this is the effects on incarcerated people directly: given the size of the criminal justice system in the United States, nonintervention may lead to the potential infection of millions of incarcerated people. These people are disproportionately high risk and will be most often exposed against their will.

But continuing to incarcerate people will have broader effects as well. A recent study produced by the ACLU noted that existing epidemiological models failed to account for the impact of the virus on the incarcerated populations. Given inevitable contact between carceral facilities and the “outside” world­, outbreaks in jails and prisons will have marked effects on the trajectory of the pandemic (ACLU 2020). The report estimates that if we fail to radically change present incarceration practices, as many as 200,000 people could die in the United States—double the number reported in many current models. The grim findings stem in part from the fact that prison staff and people who will unavoidably return home risk spreading the virus to their families and communities. And the increase in infections has indirect effects too, distressing the availability of healthcare resources for other people. The study suggests that we can save the lives of 23,000 people in jails and prisons and 76,000 in the broader community by stopping arrests for minor offenses and doubling early release rates.

Public health is clearly a central element of welfare and wellbeing and is central to protecting common goods of the sort listed above. These public health costs are factored into considerations about an array of emergency policy decisions, including the enforcement of social distancing measures. Similarly, they ought to be taken into account in designing emergency criminal justice policy.

(ii) Impact on social equality

It is well established that people in disadvantaged social positions are more likely to be involved in the criminal justice system. In a variety of contexts, racial minorities are disproportionately represented in jail and prison populations. Moreover, justice-system-involved people also tend to have lower levels of educational attainment, a problem compounded by limited access to education within carceral facilities. They also disproportionately live with serious mental and physical health issues.

The impact of the criminal justice system ought to be worrisome for prioritarians or anyone concerned with the wellbeing of the worst off given that, in practice, the system worsens their wellbeing; in a slogan, the criminal justice system works to make the worst off worse off yet. In this, it has worrisome effects on social equality.

This issue reminds us of the devastating toll the crisis is having on racial minorities more broadly. Data from several hotspots in the US illustrates that Black and Hispanic Americans are dying of the virus at rates much higher than white Americans. In Chicago, for instance, though Black Americans comprise only a third of the city’s population, they make up over 70 percent of COVID-19 related deaths (Yancy 2020). There are several plausible explanations of this effect. For one, people living in poverty, who are disproportionately members of racial minorities, are more likely to have chronic diseases like asthma, diabetes, and hypertension. At the same time, they have limited recourse to health resources, worsening the effects of poverty-related illness. These social determinants of health make it so that even in “normal” times, health and wellbeing, like other social goods, are not fairly allocated. In the case of a public health crisis, these effects are amplified.

To the extent that the COVID-19 crisis compounds the effects of incarceration to make people even worse off, it is a disaster for social equality. The perpetuation of social inequalities is an unwelcome outcome and likely runs contrary to common goods—depending, or course, on one’s worked out view of what should be involved in the common goods.

(iii) Communicative effects

Unwillingness to reconfigure criminal justice system practice amidst the current and future devastation related to COVID-19 in jails and prisons works to communicate a troubling public message: that the wellbeing of incarcerated people doesn’t matter. Against a backdrop of the historical and continued abuse and neglect of incarcerated people in the United States and elsewhere, this public-facing disregard is morally worrisome.

The communicative effects of nonintervention undermine people’s perception of the state’s priorities and values: mainly, that everyone, regardless of their membership in some social group, feels as though their interests are equally valued by the state. That everyone feels as though their interests is valued by the state clearly seems to be in public interest—perhaps constituting, on its own, a common good.

These three effects need to be taken into the justificatory calculus in determining what sorts of policies we ought to employ at the present moment. Even if all of the instances of incarceration under consideration were justified in the first place, these serious negative effects merit further justification. Note that these concerns need not be taken in tandem; public health effects alone may be sufficient to trigger the constraint. Those effects are less controversial common goods than the others; hopefully, many people will be on board with the public health costs, though I imagine people may be more hesitant about impact on social equality and communicative effects.

Costs of Early Release and Strategies of Mitigation

In order to consider whether nonintervention ultimately violates the public interest constraint, let’s now consider the negative effects of intervening by implementing broad policies that result in the release of people from prison. In my view, these issues can largely be addressed through policy design, by way of the three proposals I present below.

Three potential issues that may arise upon implementing broad emergency release policies come to mind, each of which has substantial costs. The first is the fairly obvious issue that people who are released may commit crimes, destabilizing public safety during this time of crisis. A second issue is that people may already be infected with the virus and risk spreading it elsewhere. A third issue is that people, upon being released from prison, will not have a safe place in which to return, given issues already facing the provision of social services—like services for unhoused people—during the crisis.

These are serious negative outcomes that may arise in response to the implementation of broad early release policies. However, they are not insurmountable, unlike the costs related to nonintervention. Rather, they give us important insights into how we ought to respond to the moral crisis at hand. In my view, they lend support to three concrete solutions: the creation of emergency parole boards, provision of widespread testing for those who have been exposed to the virus (and alternatively, strategies for non-carceral quarantine), and comprehensive reintegration support for those released.

(i) Emergency parole boards

For people convicted of serious crimes, decision-makers ought to be fairly confident that, upon release, they will not be serious threats to public safety, especially given the limited capacity of the justice system to deal with future crimes. Assessing recidivistic risk is notoriously difficult and many existing risk-assessment tools have worrisome discriminatory effects. Nonetheless, assessing risk in this context is very important and unavoidable. Consider, for instance, the disaster of releasing people who will commit intimate partner violence. This issue is even more worrisome given currently-in-place stay-at-home orders.

Perhaps to the dissatisfaction of the reader, it is not my goal to provide details about how these risk assessments ought to be conducted. But just as we are creating bodies of experts to deal with the impact of the crisis in other domains, we ought to do the same in creating a mechanism for making these difficult judgements. Along these lines I propose creating Emergency Parole Boards to play this role. The boards ought to be composed of social workers, health professionals, legal system actors, and community members.

It may be best if the Emergency Parole Boards proceed according to a multi-stage approach. First, people who are low-risk, including those convicted of drug offenses and non-violent crimes, along with those who are incarcerated for their inability to afford bail, ought to be released immediately. In that stage, the Emergency Parole Board should also evaluate the cases of those who are at high-risk of developing severe complications if they were to contract COVID-19. In order to substantially impact the number of incarcerated people, it is imperative to evaluate cases where people are convicted of more serious offenses as well. As Insha Rahman, Director of Strategy and New Initiatives at the Vera Institute of Justice, remarked, “If we don’t tackle the question of people serving time on violent convictions, we can’t meaningfully stop the spread of Covid-19. … That’s just not going to make a meaningful dent” (Speri 2020).

The number of people who do not pose pressing public safety threats may be higher than one assumes. A 2016 report by the Brennan Center for Justice found that 40 percent of people in US prisons and jails were incarcerated for no pressing public safety reason (Eisen et al. 2016). Drawing on criminal codes and data about recidivism and the effectiveness of non-carceral strategies, researchers found that many people incarcerated for lower-level crimes would be more effectively “punished” through alternatives to incarceration and that, in terms of public safety, we could safely shorten the sentences of many people convicted of more serious crimes.

Elderly people are especially unlikely to commit further crimes upon release. A 2017 report by the United States Sentencing Commission found that people who were over the age of sixty-five when released from prison had just a 13 percent chance of being rearrested within eight years (United States Sentencing Commission 2017). On the other hand, those under twenty-one are nearly 70 percent likely to be re-arrested. Given that the coronavirus is especially dangerous for elderly people, older people make ideal candidates for early release.

In addition to existing issues with risk-assessment tools, emergency release assessments will need to be calibrated to deal with issues related to present circumstances; data indicates, for instance, that there has been a substantial decrease in violent crime in many jurisdictions. It is likely the case that many people will not reoffend as usual.

Note that if many, but not all, people were released from carceral facilities, we could avoid many of the costs of nonintervention (i-iii above). Many of the public health costs and related consequences understood in terms of equality and communicative salience are directly related to crowding in prisons. Dramatically reducing the number of people in prisons would curb many of these effects.

Moreover, the parole boards would allow criminal justice actors and social workers to engage socially-distanced monitoring. Though I am proposing an immediate solution here, it is likely the case that issues related to COVID-19 will continue for the foreseeable future. Relatedly, the prospect of people returning to jails and prisons upon the relaxation of social distancing measures is possible, albeit logistically and administratively challenging in practice. That said, it will likely be best if the emergency release measures are permanent in many cases, following a period of virtual monitoring.

(ii) Widespread testing

Safely releasing people from prisons and jails is contingent on the availability of testing for those who have been in facilities with infected people. There is already a moral imperative to increase the availability of testing; the case of incarcerated people adds urgency to this challenge.

As a fallback, it may be possible in some jurisdictions to transfer incarcerated people to facilities where they can better practice social distancing while isolating. In this respect, New York City has made use of the city’s empty hotels, providing temporary shelter for unhoused people to slow the spread of the virus (Connelly 2020). Similar strategies could be adopted for people recently released from jails and prisons.

Along similar lines, people have proposed housing unhoused people in hotels in New York City. This could be a possibility as well.

Note that this need not apply to those incarcerated everywhere, since there are not confirmed infections in every jail and prison. In such cases, the risk of the harms above is still present and emergency release measures ought to still be implemented, though they may need not be contingent on widespread testing.

(iii) Reintegration support

For some—but notably, not all—incarcerated people, it is not obvious where they will “return” upon release. One worry is that these people may put additional stress on social services, which are already struggling to meet the needs of people who are unhoused in the face of the present crisis. As in the case with testing, I believe the case of incarcerated people adds more support to the idea that we ought to be putting substantial resources into dealing with the welfare of socially vulnerable people during the crisis.

However, it is not the case that all incarcerated people are in this position—many will have no trouble returning to friends and family. In Emergency Parole Board negotiations, the board should consider people’s reintegration plans, and people who do not have immediate plans for meeting basic needs including housing ought to be connected with social services.

This list is by no means exhaustive or comprehensive—I suggest these strategies specifically given their ability to mitigate the harms of nonintervention without running into the negative consequences of emergency release policies. Moreover, the policies need more detailed development, and their implementation will obviously be challenging. However, the problem of incarceration during COVID demands attention and radical solutions. In this domain and others, the crisis necessitates human ingenuity and the reimagination of political and institutional practices.

CONCLUSION

I hope this discussion leaves readers more confident in the moral imperative of radically changing justice system practices in light of present circumstances. I argued first that if we continue incarcerating people as usual, we will effectively dish out many punishments that are unjustified on standard justificatory theories given that circumstances related to the coronavirus crisis increase punishment severity. I then showed that there are serious issues with the idea that we need not take unintentional aspects of punishment, like the harms associated with COVID-19, into account in assessing severity and justification. Finally, I proposed an alternative approach to justifying criminal law policy: that we ought to take public welfare and wellbeing and the provision of common goods into account in assessing the justifiability of criminal law practices. I then suggested that continuing to incarcerate people as usual has substantial negative effects on public wellbeing and common goods. On the public interest view, then, those policies are potentially unjustified. I closed by proposing concrete strategies that work to mitigate the consequences of nonintervention while preserving other relevant common goods and public welfare.

This non-ideal, public interest-focused approach allows us to radically reimagine the design of criminal law policy beyond the present pandemic. Thinking of the criminal law as an institution tasked not with punishing wrongdoing but rather with promoting public interests reorients how to think about the design of the system. Correspondingly, emergency release policies implemented in response to the crisis can offer a blueprint for broader decarceration strategies. Many of the policies that contributed to the moral atrocity of mass incarceration in the United States and elsewhere do not ultimately protect common goods and promote public welfare. Thinking about emergency release in response to the coronavirus pandemic invites us to reconsider those policies in favor of less-harmful, non-carceral alternatives.

REFERENCES

ACLU (American Civil Liberties Union). 2020. “COVID-19 Model Finds Nearly 100,00 More Deaths Than Current Estimates, Due to Failure to Reduce Jails.” https://www.aclu.org/sites/default/files/field_document/aclu_covid19-jail-report_2020-8_1.pdf.

Aristotle. 1984. Politics. Translated by Carnes Lord. Chicago: University of Chicago Press.

Binswanger, Ingrid A., Nicole Redmond, John F. Steiner, and LeRoi S. Hicks.2012. “Health Disparities and the Criminal Justice System: An Agenda for Further Research and Action.” Journal of Urban Health 89:98–107. https://doi.org/10.1007/s11524-011-9614-1.

Chiao, Vincent. 2016. “What is the Criminal Law For?” Law and Philosophy 35 (2): 137–63. www.jstor.org/stable/44980957.

Duff, R. Antony. 2018. The Realm of Criminal Law. Oxford: Oxford University Press.

Eisen, Lauren-Brooke, James Austin, James Cullen, Jonathan Frank, and Inimai M. Chettiar. 2016. “How Many Americans Are Unnecessarily Incarcerated?” Report by the Brennan Center for Justice. December 9. https://www.brennancenter.org/our-work/research-reports/how-many-americans-are-unnecessarily-incarcerated.

Hart, Herbert Lionel Adolphus. 2008. Punishment and Responsibility: Essays in the Philosophy of Law. Oxford: Oxford University Press.

Husak, Doug. 2019. “The Metric of Punishment Severity: A Puzzle for the Principle of Proportionality.” In Of One-Eyed and Toothless Miscreants: Making the Punishment Fit the Crime?, edited by Michael Tonry, 97–126. Oxford: Oxford University Press.

Hussain, Waheed. 2018. “The Common Good.” Stanford Encyclopedia of Philosophy https://plato.stanford.edu/entries/common-good/.

Kolber, Adam J. 2012. “Unintentional Punishment.” Legal Theory 18 (1): 1–29.

——— 2009. “The Subjective Experience of Punishment.” Columbia Law Review 109: 182–236.

Locke, John. 1698 [1988]. Two Treatises of Government, edited by Peter Laslett. Cambridge: Cambridge University Press.

Rawls, John. 1971 [1999]. A Theory of Justice. Harvard University Press.

——— 1993 [2005]. Political Liberalism (Expanded edition). New York: Columbia University Press.

Rousseau, Jean-Jacques. 1762 [1997]. ‘The Social Contract’ and Other Later Political Writings, (Cambridge Texts in the History of Political Thought), edited and translated by Victor Gourevitch. Cambridge: Cambridge University Press.

Sawyer, Wendy and Peter Wagner. 2020. “Mass Incarceration: The Whole Pie 2020.” Prison

Policy Initiative, March 24. https://www.prisonpolicy.org/reports/pie2020.html.

Smith, Adam. 1776 [2000]. The Wealth of Nations. New York: Modern Library.

Speri, Alice. 2020. “Mass Incarceration Poses a Uniquely American Risk in the Coronavirus Pandemic.” The Intercept, May 6. https://theintercept.com/2020/05/06/coronavirus-prison-jail-mass-incarceration/.

The New York Times Editorial Board. 2020. “No One Deserves to Die of Covid-19 in Jail.” The New York Times, April 23. https://www.nytimes.com/2020/04/23/opinion/coronavirus-prisons.html.

The New York Times. 2020. “Coronavirus in the U.S.: Latest Map and Case Count.” The New York Times, May 15. Accessed May 15, 2020. https://www.nytimes.com/interactive/2020/us/coronavirus-us-cases.html#hotspots

The Osborne Association. 2018. “The High Costs of Low Risk: The Crisis of America’s Aging Prison Population.” May. http://www.osborneny.org/resources/the-high-costs-of-low-risk/the-high-cost-of-low-risk/.

United States Sentencing Commission. 2017. “The Effects of Aging on Recidivism Among Federal Offenders.” December. https://www.ussc.gov/sites/default/files/pdf/research-and-publications/research-publications/2017/20171207_Recidivism-Age.pdf.

Vera Institute of Justice. 2020. “We Must Urgently Do More to Address COVID-19 Behind Bars and Avoid Mass Infection and Death: Guidance for Attorney General Barr, Governors, Sheriffs, and Corrections Administrators.” May 11. https://www.vera.org/downloads/publications/coronavirus-guidance-crisis-behind-bars.pdf.

von Hirsch, Andrew. 1998. “Seriousness, Severity, and the Living Standard.” In Principled Sentencing 2nd edition, edited by Andrew von Hirsch and Andrew Ashworth, 185, 189. Oxford: Hart Publishing.

Walzer, Michael. 1983. Spheres of Justice. New York: Basic Books.

Widra, Emily, and Peter Wagner. 2020. “While Jails Drastically Cut Populations, State Prisons Have Reduced Almost No One.” Prison Policy Initiative, May 1. https://www.prisonpolicy.org/blog/2020/05/01/jails-vs-prisons/

Yancy, Clyde W. 2020. “COVID-19 and African Americans.” Journal of the American Medical Association, Online First April 15. doi:10.1001/jama.2020.6548.


[1] I doubt that this is true in many cases, but the assumption allows us to work from the best-case scenario. In cases where the assumption does not hold, then the instance of punishment under consideration was unjustified to start, and so will still be unjustified in light of current circumstances. Thus, if you accept my argument, cases will be unjustified under present circumstances whether or not they were justified at the outset.