The Virtues of Vulnerability. Humility, Autonomy, and Citizen-Subjectivity 2020019492, 2020019493, 9780197516645, 9780197516669

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The Virtues of Vulnerability

The Virtues of Vulnerability Humility, Autonomy, and Citizen-Subjectivity S A R A RU SH I N G

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Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America. © Oxford University Press 2021 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by license, or under terms agreed with the appropriate reproduction rights organization. Inquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above. You must not circulate this work in any other form and you must impose this same condition on any acquirer. Library of Congress Cataloging-in-Publication Data Names: Rushing, Sara, 1972– author. Title: The virtues of vulnerability : humility, autonomy, and citizen-subjectivity / Sara Rushing. Description: New York, NY : Oxford University Press, [2021] | Includes bibliographical references and index. Identifiers: LCCN 2020019492 (print) | LCCN 2020019493 (ebook) | ISBN 9780197516645 (hardback) | ISBN 9780197516669 (epub) Subjects: LCSH: Vulnerability (Personality trait)—Political aspects. | Humility—Political aspects. | Autonomy (Psychology) | Political participation—Psychological aspects. | Civics. Classification: LCC BF698.35.V85 R87 2021 (print) | LCC BF698.35.V85 (ebook) | DDC 179/.9—dc23 LC record available at https://lccn.loc.gov/2020019492 LC ebook record available at https://lccn.loc.gov/2020019493 1 3 5 7 9 8 6 4 2 Printed by Integrated Books International, United States of America

Preface Embodied Awakenings: On Love, Loss, and Learning to Be Human [W]hile philosophy may begin in wonder that things are the way they are (Aristotle), may be a preparation for death (Plato), or may be the acceptance of finitude, much political theory begins with loss. Loss animates it as an enterprise and forms its problematic. —Peter Euben, “The Politics of Nostalgia and Theories of Loss”1

In many ways the story I tell through this book, like so many other contemporary American political narratives, originates in the fall of 2001. But it was inaugurated by, and its arguments take shape through, much more personal contexts than 9/11. While September 11 was a moment of profound national shock and trauma that I shared in as an American, and a human (albeit one who experienced that event from a distance), it was October 29 that I regard as the day this project started. On that day, my twenty-five-year-old brother committed suicide. On that day, I began a crash course in traumatic loss and grief. While at the time I could intellectually appreciate the ensuing national discourse on the need for public rituals of mourning and the politics of grief in waning democracies, I  also felt utterly removed from it. Occasionally I even felt incensed by the ability of theorists to abstractly theorize loss or deploy trauma as a heuristic. Too miserable and lonely at home, though, I would drag myself to campus and sit in my crowded graduate student office, knitting loudly and feeling proprietary over suffering, and also hoping that no one could see me. When someone you love commits suicide, people sometimes ask, “Were you surprised?” I used to find this question so personal, odd, and aggressive. Did I know it was coming, and still fail to prevent it? After some time, however, I came to think about it differently. Was I surprised? Maybe not. Shocked to the core of my being in a way that escapes words, yes. It is amazing how shocking something perhaps unsurprising can be! For can you really be surprised by the suicide of a young person who has struggled with mental

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illness for many years already, who has recently undergone his first involuntary commitment to a mental health facility, who is frenetically bright and poignantly creative and can only see a future of dull and always ending jobs, who occasionally believes he’s Jesus and gives away all his stuff, who thinks he is entitled to so much more from the world and also nothing at all? Can one be surprised, when these are not uncommon dimensions of young white male mental illness in America? I don’t know. What I do know, at this point, is that my foray into shock and grief deeply shaped how I encounter the world, not only as a sister, daughter, friend, mother, or partner, but as a feminist and political theorist interested in citizen-subjectivity, self-determination, and bodily and psychic vulnerability. As Judith Butler tells us about mourning, There is losing, as we know, but there is also the transformative effect of loss, and this latter cannot be charted or planned. One can try to choose it, but it may be that this experience of transformation deconstitutes choice at some level. I do not think, for instance, that one can invoke the Protestant ethic when it comes to loss. One cannot say, “Oh, I’ll go through loss this way, and that will be the result, and I’ll apply myself to the task, and I’ll endeavor to achieve the resolution of grief that is before me.” I think one is hit by waves, and that one starts out the day with an aim, a project, a plan, and finds oneself foiled. One finds oneself fallen. One is exhausted but does not know why. Something is larger than one’s own deliberate plan, one’s own project, one’s own knowing and choosing.2

Captured here is the connection between the deconstituted subject, the contingent self and its thoroughly relational identity, the grieving body in pain, the peculiar punctuation of death time, and what we might call, in the language of Lauren Berlant, the cruel optimism of “choice.”3 Grief has little interest in our (extensively socially produced) desire for choice and control. When we are finally fed up with grieving, after months or years of feeling bone-weary, unreliable, cranky, bored, six inches off the ground as we float through the days, and we say to grief “No more!” or “Enough already!” or “Fuck this!”4—grief is deaf. When we are good grievers, patient and nice enough to others despite our pain, working the five stages, setting some goals for becoming human again, making a “grief plan” based on researching the grief trajectory of successful grievers we interview—grief is unimpressed. Years later I can laugh at this sentence, and the endearing if misguided ways

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one might attempt to manage failed autonomy under the humiliating forces of grief. But at the time I had no idea. With one phone call from the San Francisco Police Department I was set on the path to awareness of the extent to which I had dwelled, until that moment unwittingly (even hubristically!), in a blissful delusion of sovereignty.5 A wish turned into an illusion, as Freud tells us. Why do I describe as “humiliating” this sudden embodied awakening to the extreme vulnerability that grief exposes, perhaps particularly grief from traumatic loss? Assuming for a moment that my brother’s suicide was not my fault (an assumption I believe intellectually is accurate, and bodily churn over still), why does the very fact of exposure give rise to feelings of something like shame or embarrassment? Suicide carries a stigma, of course. When you tell someone that a beloved died of suicide and not, say, cancer, their sympathy is always (in my admittedly subjective experience) intermixed with a grimace that conveys the horror of such things. Sometimes this is a knowing grimace—the cringe of familiarity. Dear reader, you may or may not know this, but it turns out that a lot of people commit suicide. Still, it was many years before I was able to answer the question “How did your brother die?” without being wracked by a deep desire to respond to the inquisitor, “Don’t look at me!”6 Etymologically “humiliation” derives from the Latin root humus—lowly, earthy, on or of the ground. The word “humility” shares this root, though within the tradition of virtue ethics humility as a character trait becomes something we can actively cultivate in ourselves, and should, because it is figured as good for the bearer of the trait (hence its status as a virtue, for Confucius at least if not exactly for Aristotle, as I explore in Chapter 2). Humiliation, in contrast, is something done to us. We get humiliated, or are made to be humiliated, often by others but also possibly by our own actions, exposures, and failures. Humiliation is a feeling, or a condition (ideally rare and temporary). Humility is better grasped as a disposition. Part of the story I tell in the following chapters is about how humility can be (indeed, must be!) uncoupled from humiliation, in a way that I argue can allow vulnerability to become a route to a form of autonomy and not, as we typically consider it, an obstacle to autonomy. As this preface seeks to show, my stakes in this venture are real and personal. But this project, of rethinking humility in relation to autonomy, also makes a broader intervention into important contemporary debates about vulnerability and embodied agency within political theory, philosophy, feminist theory, critical race theory, disability studies,

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and, as the chapters ahead make clear, healthcare under the pressures of neoliberal medicalization. Some time a few years after my brother’s death something in me shifted, and I went from wanting to be invisible in my grief—to retreat into myself and tell people to “Look away!”—and started looking at it, marveling at it, wanting to share it as a constitutive part of my humanity in all its humility. There are no silver linings here, and the conditions for making such a psychic shift are, I fully acknowledge, extensive and entail all sorts of privilege (therapy, unconditional love, time off from work, a partner who does their share and then some, a family of origin with a dark sense of humor, the currency of whiteness and the cushion of middle classness, etc.). Yet I now see that I was set on a transformative, if initially unwelcome, path. In making my way along that path and slowly learning to chart its course (just a little bit, on the good days), I came to see its profound value for me as a human. The word “human” shares the “hum” with humility, and comes from the Latin humanus or homo—earthly beings, as opposed to the gods of the sky. In the introduction to Staying with the Trouble, Donna Haraway tells us of the chthonic creatures she will orient her exploration around, beings of the earth that “romp in multicritter humus but have no truck with the sky-gazing Homo.”7 Haraway’s beings are always among the earthly, not the gods of the earth who were sent, as the Bible tells and as John Locke shored up again later, to subdue the earth and rule over it. As Haraway unpacks and critiques this story, the human came to think of himself (if not herself) as the exceptional critter, and the hero. But the project of subduing and ruling over—the quest for mastery of self through domination of nature—hasn’t gone very well. The Anthropocene tale is a futile one. We need a new story, Haraway persistently, insistently reminds us. I share her impulse, though I explore new ways of thinking about the human vis-à-vis humility, relationality, and the quest for autonomy in the context of a different aspect of late modern power/knowledge at work on and through the body. As the introductory chapter ahead outlines, the site of my analysis is “the clinic.” My journeys in the clinic did not begin with my brother, exactly. He did a forty-eight-hour stint against his will at a mental health facility in Berkeley, where, in a move that fascinates and delights me, a janitor suggested he read Foucault’s Madness and Civilization. (“Have you heard of this guy?” he asked me later. “Yeah, I’ve heard of him,” I answered gingerly, trying not to be the know-it-all big sister who not only commits you to a mental institution

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against your will, but also brags about what she’s read.) My brother was working on finding a psychiatrist, but without much luck (thanks, Foucault). As for myself, I had been to therapy after my parent’s divorce as a kid, done my yearly wellness visits with primary care doctors, and had a broken arm that required surgery and physical therapy (OK, and there are plenty of other bumps in the road that I am leaving out). But it wasn’t until I was pregnant with my daughter, at thirty-five, that I found myself caught up in the world of obstetric medicine for patients of “advanced maternal age,” in a way that worked on my consciousness by way of much contact with and surveillance of my apparently geriatric body. I do not miss peeing in a cup. I will end this preface, then, with a story of my February 2007 trip to the perinatologist, a lovely man in Eugene, Oregon, who was so firmly committed to respecting my autonomy as to be useless! The question I felt ill equipped to answer, based on having zero personal experience with the matter, was whether to have an amniocentesis to test for genetic disorders because of my elderly status. If possible, I preferred to avoid having a large needle inserted through my abdomen into my amniotic sac, with a chance of miscarriage.8 The risk of loss, my sense of the extreme precarity of pregnancy and life more generally, and my fear of being exiled again in the land of grief were visceral. The doctor gave me a lot of statistics weighing various risks (none psychic, it bears mentioning), and asked me what I wanted to do. I asked him what he thought I should do, given the details of my health, age, and family history. He gave me all the statistics again, and some additional ones, and again asked me what I wanted to do. I asked him what he would counsel me to do if I was his daughter and he was, say, a perinatologist. He laughed, and said he really couldn’t advise me on what to do, and blah blah blah patient autonomy and so on, and began to give me the statistics again. The statistics said “yes” to the procedure, but my belly said “no,” and the doctor said nothing particularly helpful. My partner was there too, and he didn’t know what to say, for which I fault him not at all! But what to do? I went with my gut, or my belly (or my deep desire to avoid the needle, and loss), and all was fine in the end. Yet I left that foray into the clinic with a profound sense that while I was a relatively educated person who valued my own agency and was personally and politically invested in self-determination, I was also confused. And, perhaps paradoxically, I felt like my autonomy was not served by the doctor’s firm commitment to leaving the choice entirely up to me. Dude, just tell me what to do! The quest for agency (autonomy) and deference to authority (which calls for a certain humility) seemed to me in

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that moment not to be opposites, but to be fundamentally interdependent. That hunch, that nagging embodied sense, became the ideational basis for this project. Grief I have known, and birth I have done (first in a hospital, and then in my living room). The other chapters of this book are personal in different ways. Hospice for the slow dying of long-term illness is something that, perhaps strangely, I now find myself hoping to be lucky enough to experience with my parents (and maybe, way down the road, myself). Yet I am terrified of wading into those waters unprepared as my parents age. They might prefer a quick death, but selfishly I want time to process. So far no one is sick, but death is unavoidable. Treatment of post-traumatic stress disorder (PTSD) for combat-wounded veterans vexes me as a citizen. It’s easy for it not to be personal, because most of the veterans I know are students, and they come and go, and are seeking a college degree often for a future beyond the military, and they typically don’t tell me about their PTSD unless they really have to. But the numbers are stark, and that is on all of us. So despite feeling totally unqualified to write about veterans, I wrote about veterans. As the introductory chapter maps out, this is a very interdisciplinary project that seeks to make contributions to an array of literatures and debates. In that sense, I wrote this book as a political theorist, and I hope it speaks to scholars within and beyond my discipline, as well as to healthcare practitioners and administrators. But I also wrote this book as my brother’s sister (and my sisters’ sister), my children’s mother, my partner’s partner, my parents’ daughter, my friends’ friend, my neighbors’ neighbor—a person whose identity and agency, past and future, are deeply imbricated with others, in a relational network that brings much joy, meaning, inevitable loss, and pain. So mostly, I hope this book speaks to readers as humans, in all their vulnerability, with their aspirations for autonomy, in relation to each other, in ways that always require humility; and humility not as the result of humiliation, but as a cultivated disposition toward being human, and thus a route to meaning, connection, courage, hell-raising, and humor on the path from birth to death.

Acknowledgments This book was long to gestate. Needless to say, an extensive community of scholars, friends, and family supported its delivery into this world, including many people along the way willing to share with me their stories of love and loss, and of birth, death, and illness. From the day I  got to graduate school, Keally McBride has endlessly encouraged me. David Gutterman popped into my office when I  was adjuncting at Linfield College and asked if I wanted to co-author something on suffering, Socrates, and Judith Butler, and got me to finish a dissertation I was ready to ditch. James Martel, who endured my youthful (over)enthusiasm when editing an essay he wrote for Critical Sense, a graduate theory journal at Berkeley, has repaid my haughtiness with kindness and insight. Keally and James provided detailed feedback on virtually this whole manuscript, for which I’m deeply grateful. Some early helpful comments were provided by Wendy Brown, Mary Dietz, and Kathy Ferguson. Others who have been unfailingly supportive are Libby Anker, Cristina Beltrán, Mark Button, Heath Davis, Karen de Vries, Shirin Deylami, Kennan Ferguson, Farah Godrej, Bonnie Honig, Vicki Hsueh, Bridget Kevane, J. J. McFadden, Claire McKinney, Matt Moore, Tracy Osborn, Heather Pincock, Shalini Satkunanandan, Leah Schmalzbauer, Nichole Shippen, George Shulman, Simon Stow, and Andrew Valls. And so many others! I’m grateful to Michaele Ferguson, Anna Daily, and Tamar Malloy for facilitating a lively engagement with the theory crew at the University of Colorado, Boulder. I also benefited from presenting at University of Nevada, Reno; Western Washington University; the Montana State University Honors College; and Amherst College, the last of which was particularly lovely because attended by my undergraduate advisor at Mount Holyoke, Steve Ellenburg. Steve Angel and Michael Slote helped me immeasurably during an National Endowment for the Humanities (NEH) summer seminar at Wesleyan College on Virtue Ethics and Confucianism; as did Howard

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Curzer, Ben Huff, Heidi Giebel, and others who reconvened in Bozeman and then Beijing. My sincerest thanks to Angela Chnapko and Alexcee Bechthold at Oxford University Press for helping turn an unwieldy manuscript into a real, live book, not least by selecting two thoughtful and detailed external reviewers whose feedback was invaluable. The Association for Political Theory has supported my flourishing and this project over the past years, by including me as a conference participant (where I  benefited from amazing co-panelists and discussants, and got to know senior people in the field whom I might not have otherwise met) and giving me the opportunity to serve my discipline. At Montana State University I am extremely lucky and grateful to have a department full of colleagues who are curious and kooky in the best way. They are critical readers, teaching mentors, and engaged citizens; they are confidantes, skiing partners, surrogate aunties/babysitters, and advocates for (my) pay equity. Their support of me as a parent, scholar, and activist over the past decade has been profound. Thank you, David Parker, Linda Young, Liz Shanahan, Eric Austin, Paul Lachapelle, Eric Raile, Franke Wilmer, Kelsey Martin, and Holly Watson. Other thanks for sustaining me all these years goes to the Berkeley kids— Laura Henry, Jill Hargis, Brian Duff, and Maria Rosales. My head and my heart are so much the richer for our friendship. I am eternally grateful to Hargis for dragging me out of bed so many mornings after my brother died, and making me jog my way through grief. Thanks also to Ellie and John Larison; Wyatt Cross and Elizabeth Reese; D’ana Baptiste, Jen Jordan, and the Yelapa crew; Rebecca and Andy Bunn; Steve and Coco Kirchhoff; and the Westridge/Circle Drive neighborhood gang. Above all, I am grateful to my family: thank you to my Dad and Step-mom, Travis and Julie Rushing, and my stepsisters, Dee Dee, Stephie, and Carrie. To Sam, Rena, and Leslie Powell, Jacob and Elise, and Steven Stoll. Thank you to Augusta, Ben, and Will, the three amazing creatures whom I get to call my children. You never cease to delight and challenge me, and are the greatest things that ever happened to me! To my love, Scott Powell, my partner on this journey, who constantly runs interference and without whom I could not have finished this book, or a whole lot of other things. To my sister, who is one of the funniest, smartest, weirdest, loudest, kindest people I could ever hope to share my life with, and who loves me enough to call me her “favorite living sibling.” Jill Rushing Fonte, you complete me. To my mom, Diane

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Wolff Rushing, who is my greatest supporter and honestly seems to think I can do whatever I put my mind to, with the proper balance of humility and autonomy. It’s a powerful elixir and a profound form of love. And finally, to Travis Parker Rushing (1976–2001), without whom this project would not have happened (and I say that, Tip, in the snarkiest, most loving, saddest, and most grateful big-sister way possible).

1 The Body as a Site of Politics On Choice and Control

Democratic theory, with important exceptions, counts voting and open rebellion as “political” actions, for example, but neglects or dismisses the constitution of citizens in the therapeutic, disciplinary, programmatic, institutional, and associational activities of everyday life. —Barbara Cruikshank, The Will to Empower1

The body has long posed a problem for Western thought. It has represented the locus of need and dependence and been the source of our loss of control, our slavery to appetites and passions, our susceptibility to impingement by others we do not choose, our subordination, our annihilation. Bodies, we learn, are humiliating. Yes, the body is also the site of desire, pleasure, connection to the world, a vehicle for heightened consciousness, and, for some, autonomy. But Christianity, and Plato before that, provided an enduring claim that in many ways Western thought has yet to transcend: the body is a prison. Within the liberal tradition, the impulse to manage and capitalize on this problem turned the body into the site of rights and the source of economic value; one’s dominion, tool, and property. Contemporary critical theory, particularly feminist theory, critical race theory, queer theory, and disability studies, has done much to critique both liberal individualism and the sovereign body as abstraction. All these literatures have focused attention on what Judith Butler has called “the disavowed dependency at the heart of the masculinist idea of the body,”2 and threads within each discourse have persistently reminded us that the normative body is not only “able,” straight, and male, but also white, wealthy, and “of sound mind.”

The Virtues of Vulnerability. Sara Rushing, Oxford University Press (2021). © Oxford University Press. DOI: 10.1093/oso/9780197516645.001.0001.

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Disability studies scholarship has perhaps gone furthest in depicting dependence and vulnerability as paradigmatic, not exceptional, and thus articulating the problem not as one of certain kinds of bodies, but of cultural mythologies and inhospitable environments; psychic and built worlds that create obstacles to access and inclusion.3 Such barriers often are not insurmountable as design or engineering problems, but as matters of public and political will (including willful ignorance about infrastructural and normative impediments to full participation in public life).4 Feminist care ethics has similarly centered dependence and located the problem not in bodily fragility itself but in a world of social and economic structures that render relationality and caring responsibilities private, invisible, and of low value.5 And critical race theory (particularly Afro-Modern and black feminist theory) has centered the body, dependence, and vulnerability, but deployed the concept of intersectionality to demand recognition that, while these human conditions are universal, embodiment and how body meets world admits of crucial variation for those whose bodies are traditionally the source of subordination.6 These critical, problem-centered theories persistently call our attention to the fact that the body, as the material entity that both connects us to and separates us from each other, functions as a crucial site of contestation and negotiation. And yet, while recognizing the significance of relationality, interdependence, and how body meets world, all of these discourses maintain commitments to individual bodily integrity and self-determination. Feminist political activism (particularly activism oriented around reproductive rights) has been especially vocal about affirming a certain ideal of selfpossession, or the idea that “my body is mine,” as crucial for emancipatory projects.7 The body, political theorists well know, has long served as a metaphor for the structure and relations of the polis. But embodiment—the lived reality of “body-in-situation,” as Iris Marion Young (following Beauvoir) described it, or the social and material configurations of the body that Elizabeth Povinelli calls “enfleshments”—is something that political theory has frequently bracketed when theorizing citizenship, agency, and the category of “the human.”8 As Samantha Frost writes in Biocultural Creatures, “so much of what drove the old project of the human was a revolt against embodiment, against the animality, the organismic, the materiality of human creaturely existence.”9 The disembodied rational, autonomous subject of liberalism lent itself well to the democratic individualism that Tocqueville pointed to in the

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1830s, when he wrote about Americans that “They owe nothing to any man, they expect nothing from any man; they acquire the habit of always considering themselves as standing alone, and they are apt to imagine that their whole destiny is in their own hands.”10 While perhaps a bit of a caricature, this hubristic sentiment has had many robust iterations in U.S. history. Against this tendency, how might we reimagine the political potential of embodiment, or make space for considering what I  call “the virtues of vulnerability”? I explore this question here on a journey through medicalized encounters with birth, death, and illness. These are moments of profound bodily vulnerability, but also sites where we are hailed as certain kinds of agents. Subjected within the dominant cultural and medical-institutional discourse of “choice and control,” we find ourselves having to navigate complex, overlapping systems of power and knowledge that we may know virtually nothing about. What material and relational conditions and personal traits might make this journey through what sociologist Wendy Simonds has called “Hospital Land USA” more, or less, empowering?11 What might make our experience of extreme bodily vulnerability there fortifying and not (or not merely) threatening? Through detailed examinations of birth, death, and illness, I argue that refigured conceptions of the ethical virtues of humility and autonomy—uncoupled from humiliation and radical independence, respectively—would serve us well as we navigate complex orders of enfleshed contemporary life, from institutionalized healthcare to democratic participation in the polity proper. One aim here, then, is to leave readers with a new conception of “humilityinformed-relational-autonomy.” I will consider this book at least partly successful if you are no longer able to hear “autonomy” without “humility” and vice versa, both when thinking about “patienthood” and citizenship. The quest for freedom and self-determination must partner with the recognition that we’re bound to fail at that project much of the time, as people living in fleshy bodies over which we never have full control, and as citizens living and acting in pluralist political bodies, within which we never have full control. Given these facts of life, humility-informed-relational-autonomy is a crucial ethico-political disposition, the recognition and cultivation of which has the potential to make experiences of vulnerability empowering and not merely threatening. Humility then becomes foundational for a political subjectivity and a form of agency that takes embodiment as its condition, not an obstacle to overcome. Put differently, I argue here that while corporeal experiences of certain kinds might diminish our sense of ourselves as

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agents—as people capable, individually and collectively, of challenging and possibly transforming systems of power we are subjected within—other encounters with bodily vulnerability, particularly those that entail socially supported conditions of humility-informed-relational-autonomy, can enhance our agency.

On Choice and Control, Life and Loss In the United States, the problem of bodies is conspicuous in the ongoing political debate about healthcare. In its most recent incarnation this debate has revolved around the battle between “Obamacare vs. Trumpcare.” As numerous commentaries on the topic note, the message consistently sent by those on the right is that the way to avoid trouble is “don’t get sick.”12 In the words of one Republican member of Congress speaking on CNN, we should simply decide to be one of “those people who lead good lives, they’re healthy, they’ve done things to keep their bodies healthy.”13 This comment tracks a widely circulated 2009 Wall Street Journal editorial in which libertarian Whole Foods CEO John Mackey said, “Rather than increase government spending and control, we need to address the root causes of poor health. This begins with the realization that every American adult is responsible for his or her own health.”14 Make good choices. Expect nothing from any man; your destiny is in your own hands. This now decades-long debate about the American healthcare system lays bare the risks of embodiment and unsettles any notion that “choice and control” is equally available to all, and that “choice and control” alone provides a reliable route to “health.”15 Perhaps what distinguishes the current debate about healthcare in America, however, is the existential anxiety that overlays it, about ideas of citizenship and security; a sense of impending loss that exceeds the terrain of healthcare and conjures loss of social and economic progress, of historical hierarchies of privilege, of legislative politics as we once (perhaps) knew it, of commitments to democratic culture and tradition more broadly, of any sense of a shared future, of ways of life and, of course, loss of life itself (lest we forget Sarah Palin bemoaning Obama’s “death panels”). As Judith Butler wrote in Precarious Life, “loss makes a tenuous ‘we’ of us all.”16 Butler was writing about national loss after 9/11; a loss that “we” in America all shared, albeit in different ways, and that the global community endeavored to share with us through the statement “We are all America.” In theorizing responses

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to 9/11, Butler aimed to persuade us that grief could be channeled by an ethic of generosity, humility, and restraint, and an acknowledgment of our constitutive human vulnerability, into something other than rage, disavowal, and ever more violence. Such dispositions, she argued, could enhance, not diminish, our relationality and responsibility with each other—could forge a “we,” however tenuous. But the losses threatening the populace at this political moment, though shaping up at the intersection of bodies and democracy—theoretically things we have in common—will not be shared nationally. This is true partly because many of the losses (physical and financial) will take place out of the public eye, in hospital beds and accounts payable offices, hospice centers or homes; too personal and painful for the grief to register as political, despite the fact that they will represent systemic healthcare trends, suffered by individuals but working at the level of populations (some more vulnerable than others). But the sense of threat that permeates the healthcare debate is also unlikely to forge a new “we,” however tenuous, because the debate is ideologically polarized at this point, and many of the prominent voices against socialized medicine (or even greater access to privatized care) attach to people who perceive their bodies as impenetrable and their health as their own doing. Let’s face it, though: we are all born into bodies that we are utterly incapable of independently sustaining as babies and children, and we all die in bodies. At some point all humans confront the fragility of corporeal existence, regardless of whether they “make good choices.” Knowing this, disability studies scholarship has long urged the centering of the “non-normative” body, versus the exceptional yet somehow hegemonic ideal of invulnerable physicality (statistically speaking, dependence and vulnerability are the norm). In All in the Family: On Community and Incommensurability, Kennan Ferguson invites us to consider all the “ways people begin to deal with issues of physical disability.”17 He writes, “Your wife develops diabetes, leading to partial blindness. You give birth to a deaf son. Your daughter’s doctor diagnoses her with multiple sclerosis. A  sports accident paralyzes your sister. Your elderly father begins to require a scooter or a walker to move outside the house. Your brother has an epileptic seizure and must decide whether or not to give up driving.”18 Such experiences belie the idea that individual choice and control can stave off a life that comes into contact with, or even is deeply defined by, risk, exposure, potential pain, disability, and the navigation of an often inhospitable world. Arguably, the intensity of the disavowal of dependency in much of the contemporary debate about healthcare testifies to the

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realization, on some level, that being of “sound mind and able body” may be fleeting or out of our control, and that loving other people exponentially increases our chances of living with that fact. In this vein, Nancy Hirschmann has framed hostility to disability (and disabled people) as what she calls “a function of fear of the undecidability of the body.”19 Only a small fraction of disabled people are born that way, so for the vast majority something likely unexpected happened, which thrust them into a world that the as-of-yet-able-bodied can only figure as a space of loss.20 Hirschmann quotes Tobin Siebers’s insight that “In no other sphere of existence . . . do people risk waking up one morning having become the persons whom they hated the day before.”21 But she also tempers his point, noting as Ferguson does that many non-disabled people love and care for disabled people. Living entails being imbricated with others in bodies that we don’t control. Thus, to shore up my point about disavowed dependency and the discourse of “choice and control,” even if my own choices are “right” and effective, they are only a small part of my life story. Sometimes a story follows a tidy narrative about a normative lifeline. But often, as Ferguson and Hirschmann point out, we are confronted with fragility and the deconstitution of the “normal” body and mind when we least expect it. Maybe the story goes birth (our own), illness (our own), death (our own). But maybe it goes illness (our own), birth (of another), death (of another)—or any myriad of combinations that might keep us awake at night! In a sense, I aim to functionally challenge the impulse to a normative timeline (or the delusion about life’s controllable unfolding) by looking first at birth, then death, and finally illness. In a sense, as addressed in the preface, it is the unruliness or potential disorder of life’s path that I seek to grapple with here, and that I invite readers to consider with me. Sure, life starts with birth and ends with death. For many people, though, the two do not represent bookends. For many, I  would guess, the unvarnished confrontation with the risk of death and the idea that the right “choices” might averat it will occur first at the site of childbirth. Particularly in hyper-medicalized contexts, death is the pervasive specter that informs how birthing gets done. Perhaps this has always been the case. While birth and death may be the two universal facts of life, however, it bears mentioning that birthing and dying are culturally and historically specific, and even in the United States alone they have changed dramatically in recent history. Most people in techno-industrialized Western democracies do not simply grow old and die anymore, let alone grow old and suddenly drop dead one

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day (let alone die in childbirth, though by certain accounts the United States has the worst maternal mortality rate in the “developed” world, and it is rising particularly for women of color22). For the vast majority of people lucky enough to live under more amenable economic and political conditions, birthing will be safe (if often surgical) and dying will take (and thus allow) some time, resulting from diseases that, once “terminal,” are now more often “chronic.”

Health, Citizenship, and Health Citizenship Many people around the globe, including in the United States, are not lucky enough to live under conditions of relative prosperity and security. Health and citizenship (including “second class” citizenship23) are intricately connected. Access to quality healthcare is impacted by our disparate citizenship locations and statuses. And normative ideals of health are often linked to racialized, classed, and ableist conceptions of the “good citizen” (robust, fertile, rational, self-reliant, or, in the United States today, “resilient”).24 Sites within healthcare—the complex medical/moral/religious/epistemic/ legal matrix that Foucault called “the clinic” and that I  primarily refer to as the “medical-legal-policy-insurance nexus”—are sites at which political subjectivities and agency can shape up.25 Under the rubric of “health citizenship,” scholars and policymakers have traditionally debated about health as a right of citizens, and being healthy as a responsibility—a moral and economic imperative—of citizens to their community, state, or nation. More recently, the idea of health citizenship has been used to capture dimensions of patient participation in one’s own care, and in public debates about the conceptualization and social meaning of a disease or condition and the resources allocated to research and treatment (consider breast cancer, AIDS, cystic fibrosis, and autism activism, among many other contemporary health citizenship movements).26 Some scholars now seek to distinguish “health citizenship” from a more radical and critical conception of “health activism.” Where the former revolves around rights and responsibilities within the existing medical and political systems, the latter involves a systems-challenging approach aimed at contesting the medical paradigm itself and the political, social, legal, economic, and insurance structures that bolster it.27 While typically oriented around a particular disease community, a health activist approach also

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entails systemic critique of access, economic, and power inequities, as well as of “medicalization” and neoliberal subjection as the “consumer patient” more broadly. A health activism approach brings together ideas about health and citizenship, but the “citizen” at work here is more a resistant and radical subject than a responsible-ized care consumer. We might say that this citizen enters (or exits) the clinic thinking less about rights and responsibilities, and more about equity, identity, meaning, power, and knowledge. In The Virtues of Vulnerability, I explore dimensions of the intersection of health and citizenship, but not through the lens of legislative politics or at the level of the metaphorical body politic. And while access is a crucial concern in the United States today, I am not directly focused on that question (though it bears mentioning that if the United States had universal healthcare, many of the problems I address here would be greatly attenuated). Rather, I turn to literal bodily contexts that political theorists have not typically studied, perhaps because they do not regard them as properly political. Through detailed considerations of giving birth, navigating death, and seeking treatment for life-altering mental illness—here, by veterans with post-traumatic stress disorder (PTSD)—I map out key sites in contemporary institutionalized healthcare at which we can learn important lessons about vulnerability and interdependence, the paradox of “choice” and “empowerment” in neoliberal rationality, and the quest for self-determination within conditions of relative unfreedom. This is a study of how certain sites we traditionally regard as personal or private are, in fact, deeply political—spaces of subjection within systems saturated with power; scenes of governmentality, contestation over identity and recognition, questions of resource allocation, justice, agency within constraint, and potential resistance. Birth, death, and illness figure here as sites of embodied political learning, or what I suggest is a kind of “citizenship training.” These sites within the clinic function as political microcosms of sorts, which provide an opportunity to examine questions about the production of citizen-subjectivity. In the remainder of this chapter I provide the skeleton of my argument, which the subsequent body chapters flesh out (pun intended!). My aim here is to guide readers through the series of concepts that constitute the working vocabulary of the book. Some of these terms may be familiar, but I seek to give them particular meaning (citizenship and subjectivity, for example, which I combine into “citizen-subjectivity”; awakening, which has a colloquial meaning but also a political one that connects it specifically to race and gender, justice and power; and the personal is political, the basic premise of

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feminism, which I employ to consider not how we politicize our personal experiences, but how our personal experiences politicize us). Some of these terms may be familiar to some audiences but less so to others (neoliberalism; medicalization). And some of these terms have meanings developed through centuries of philosophical debate, which I seek to revise (humility and autonomy, which I touch on here but address at length in Chapter 2). Language matters. And I believe there are certain ideas, critiques, and hopes for our lives that we can better articulate within the language that this book invites readers to speak.

Citizen-Subjectivity What is “citizen-subjectivity”? I use this term here to denote a way-of-being in power/knowledge relationships, including those we would recognize as traditionally political and those we might not immediately describe that way, like birth, death, and illness within medical-institutional settings. This wayof-being is defined by an impulse toward participation within some group, community, or institutional setting that one is part of (willingly or not), or aspires to be. Citizen-subjectivity involves a recognition of the value of selfdefinition and self-determination, a belief that one deserves meaningful participation and inclusion, and a critical scrutiny of suggestions to the contrary, particularly when such subordinating moves are facilitated and/or masked by knowledge claims. Citizen-subjectivity is dispositional, in part. It is about affects or traits of citizenship we develop, including a critical orientation toward hierarchies of power and knowledge, or an attunement, as Foucault alerts us, to being governed thusly (“like that, by these people, at this price”).28 This disposition comes into play, though, and is further cultivated through habit-forming “acts of citizenship.” To invoke both Aristotle and Butler, citizen-subjectivity is performative—an ethos reciprocally built from and put into practice. Practicing citizenship, in this conceptualization, is not about legal status, voting, or our formal relationship to the state and to rights.29 Rather, it is about an ongoing desire for freedom and justice, pursued collectively but also individually (though always interdependently), sometimes through positive constructions and sometimes simply by way of a critical and insistent, resistant, “No!” As I articulate it, the idea of “citizen-subjectivity” draws from the figure of homo politicus discussed by Barbara Cruikshank in The Will to Empower and

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detailed further by Wendy Brown in Undoing the Demos.30 This is a figure whose key features, in Brown’s words, include “deliberation, belonging, aspirational sovereignty, concern with the common and with one’s relation to justice in the common.”31 I also take inspiration here from Patchen Markell’s account of how a politics of acknowledgment can help us define “democratic citizenship not as the self-control of the people, but as a matter of taking part in the activity of politics, where taking part can refer not only to participation in authoritative deliberative and decision-making bodies, but also to a range of unofficial activities, both quotidian and extraordinary, through which authoritative acts are subjected to the unpredictable responses of those whose lives they touch.”32 And Sheldon Wolin’s “What Revolutionary Action Means Today” has helped me think about the importance, in talking about citizen-subjectivity, of distinguishing between liberal and democratic conceptions of citizenship. The former, Wolin explains, is “a bourgeois conceit, formal and empty,” focused primarily on the ideal of rights—an ideal that was “never supplied any content.”33 The latter, “if it means anything at all, means that the citizen is supposed to exercise his rights to advance or protect the kind of polity that depends on his being involved in its common concerns.” He thus makes a distinction between the activism of the KKK, for example, and groups or movements whose action bolsters explicitly democratic ends. Citizenship, for Wolin, is not a substantively or morally neutral conception.34 In articulating my account of citizen-subjectivity I  echo Charles Lee’s point, in Ingenious Citizenship, about the limits of the idea of citizenship when it is understood as a form of conventional democratic agency, “a capacity to act politically in ways that are public and collective, with generally forward-looking and romantic connotations.”35 As the contexts I analyze make clear, often it is during purportedly private and individual experiences of vulnerability and dependence that we find ourselves contentiously enacting and precariously developing our citizen-subjectivity. In Ingenious Citizenship Lee’s point is to critique the romance of democratic agency—the idea that this model “takes hold as the only (proper) way to imagine oneself as a political subject or participating citizen”—and to argue that other forms of political agency, particularly forms more available to marginalized subjects, are “equally proper and honorable.”36 My goal is somewhat different: I aim to show how sites that have been implicitly ignored by political theorists are important contexts of political analysis, because important sites of political learning.

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Reflecting on their own experience of having cancer, the medical anthropologist Lochlann Jain wrote, “living in the cancer complex requires learning new forms of advocacy and masochism, learning insurance language and how to negotiate social security insurance, as well as learning a whole slew of unwritten codes for how to be a sick person.”37 These modes of learning are ethical, economic, medical, anatomical, and also political. Like Lee, then, I care about these sites because I think the forms of agency available there, while limited and often messy “forms of quotidian resistance,” may have effects on our citizen-subjectivity. In The Misguided Search for the Political, Lois McNay argues that agency is always embodied agency, which develops within social conditions and power relations that we must pay close attention to before we can ask what makes political action possible (and for whom). McNay urges us to take seriously the “countless unremarked-upon practices and ‘games of freedom’ that make up the daily lives of ordinary citizens.”38 Attention to this “embodied register of social experience . . . highlights mundane types of social injustice and domination that have significance for the individual but are often overlooked.”39 Both McNay and Jain help us think about how political learning happens where we might be least likely to realize it. In theorizing citizenship as a form of subjectivity that may emerge from encounters with asymmetrical power and knowledge in healthcare, I aim to provide the kind of situated and embodied account that McNay and Jain call for. Such an account recognizes that politics, sociality, and ethics are deeply intertwined with each other and impacted by social identity, and thus “socially weightless” theories will fail to capture ordinary people’s political experience.40 Where McNay is focused on the depoliticizing effects of systemic social inequality and domination, however, my wager here is that sometimes these experiences can jolt us into a demand for agency. In this sense I share Claire Rasmussen’s perspective that the impulse to self-legislate may “have a political use as a creative force that produces new and different forms of political subjectivity.”41 Sometimes being interpellated as a “citizen” with very limited means and modes of participation, as I suggest often happens in healthcare, can awaken versus inhibit our citizen-subjectivity. Of course, the kind of embodied experience I consider here differs from McNay, who addresses the grinding injustice attached to social location and everyday life, particularly as “objective inequalities are taken into the body and naturalized as subjective dispositions” that erode agency.42 In centering birth, death, and illness, the corporeal experiences I focus on entail acute, not

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routinized, encounters with systems of power (though, like McNay, I consider how “oppressive socialization” can produce internalized beliefs that undermine autonomy, which, as McNay notes, is never a “straightforward issue”43). Under such intense conditions, what effect does the persistent solicitation to “choice and control” have on our subjectivity? What is the effect of being hailed as an agent in a context typically defined for the patient by profound psychic and bodily vulnerability and extremely constrained “choice”? Disorienting, perhaps? Maddening? What political training does that health citizen undergo? Finally, then, there is another important way that my notion of citizensubjectivity works to resist romantic conceptions of democratic agency and formal, abstract conceptions of citizenship as status. As Joel Schlosser notes in his analysis of Claudia Rankine’s Citizen: An American Lyric, traditional theories of citizenship as a project of standing tend to privilege ideas of capacity, energy, and activity. “Achieving” citizenship becomes a matter of transcending injury and exclusion to become empowered by “taking” what was previously denied.44 This imaginary is so pervasive, Schlosser argues, that even critiques of citizenship remain captured by it. In contrast, he reads Rankine as refiguring citizenship through the metaphor of injury, as “a site of harm, interruption, invisibility, disembodiment, and silencing.”45 In a culture of persistent psychic and physical violence against people of color, he argues, those “oppressed and dominated by racist structures cannot be expected simply to stand up and fight.”46 The basic premise of citizenship as self-activation must be challenged by the reality of embodied injury. Schlosser is drawn to Rankine because she offers a poetics of citizenship not imagined as overcoming injury, and thus she captures the experience of citizenship by marginalized and excluded people. But Schlosser also appreciates that Rankine does not end at injury. She acknowledges that disembodiment, loneliness, and invisibility often constitute the experience of citizenship for black people in America, and asks “how redress might be possible.”47 In developing my conception of citizen-subjectivity I  remain attentive to Schlosser’s concern about fetishizing activity, capacity, and energy, as well as overcoming. Bodily vulnerability in birth, death, and illness is not the same thing as the exposure to injury that characterizes the daily lives of black people in America. But it does entail a fraught and attenuated agency, enacted under conditions where transcending corporeal exposure cannot be the condition for self-determination. “Stand up and fight” means something different, even, from a hospital bed or a wheelchair (particularly as

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the prejudices and inequalities attached to race, class, gender, and ability are often intensified in healthcare, rendering health citizenship, too, harder for some than others). In treating citizen-subjectivity not as a state arrived at, but an ongoing and always embodied project that comes into relief for different people in different contexts to different extents, I aim both to defend its value and show that it is often the product of messy and contingent struggle. I will admit, however, to being inclined toward thinking about citizenship in terms of activity and capacity. But I hope that the concept of citizensubjectivity I develop here—where bodily vulnerability becomes a source of one’s desire and claim for inclusion, not something one must transcend to be a legitimate participant—can figure as the kind of “interruption” of dominant logics of citizenship that Schlosser deploys Rankine to theorize. And where I privilege the idea of “awakening” to citizen-subjectivity, I hope that can be seen as a normative aspiration; a fragile and iterative process always in need of relational and material support, not some individual moment of enlightenment with a tidy before and after. For as the next section shows, drawing on Jack Turner’s work, I aim to highlight how awakenings to citizensubjectivity are not first and foremost cognitive events, but rather begin with our lived corporeality as it exposes us to others in quotidian and epic ways.

Political Awakening There are many recent epic moments of political and social upheaval that we can examine to learn about experiences within which people “awaken” to and practice citizen-subjectivity. In recent years, the Movement for Black Lives has captured such crucial shifts in consciousness through the reinvigoration of the term “woke,” mobilized, for example, by the NAACP in their 2016 get-out-the-vote campaign, “staywokeandvote.” This image of the awakening of citizen-subjectivity has a long history in American, and particularly African American, political thought and activism. In Awakening to Race, Jack Turner traces this idea of “throwing off sleep” back through Baldwin, Ellison, Douglass, Thoreau, and Emerson, exploring how awakenings are typically less a matter of gaining knowledge one lacked, and more about finally acknowledging power and injustice.48 “Awakening,” Turner writes, “is paramount because it is prerequisite to the freedom and morality essential to becoming truly human. One cannot freely direct oneself if one is prisoner to a passively received ideology: when the self does not think for itself,

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it can move only according to another’s worldview.”49 As his analysis makes clear, awakening is an ethical, existential, and political project; an ongoing process of becoming attuned to the reality of power and its categories, conscious of one’s identity and place, of unleashing our emancipatory impulse and practicing freedom together with others. And most importantly for my purposes here, Turner’s account shows that awakening starts at site of the body, as it is raced and gendered, sexed and classed, pained and desirous; located in history and space in ways we don’t choose, and can’t will away. Consciousness emerges from embodied experience, and in Turner’s account it appears not as enlightenment but as indignation. Like the anti-racist activism of Black Lives Matter, feminist activism has similarly long grasped the importance of consciousness-raising; of awakening to the ideological and material prison inherited via gender within patriarchy. Also similarly, feminism has long made pain, loss, and grief at the site of the body central to the understanding of how political awakenings occur. At the January 21, 2017, Women’s March on Washington, which exploded into a global movement of sister marches attended by people of all genders, races, abilities, sexualities, and progressive hopes, the theme of awakening was palpable.50 Finally, in the same vein, at the culmination of the months-long, ultimately grievously unsuccessful protest of the Dakota Access oil pipeline at the Standing Rock Sioux Indian Reservation in 2016, large signs were displayed reading “Standing Rock Awakens the World.”51 Loss and grief, fear and anger, do not always beget political awakenings. Such experiences can remain firmly personal and merely painful, settling into resentment or feelings of impotence, or simply dissipating over time. Consider Bonnie Honig’s analysis in Antigone, Interrupted of the scene in Michael Moore’s documentary Fahrenheit 9/11 where we meet Lila Lipscomb. Lipscomb, the mother of a son killed in the Iraq War, is headed to Washington to publicly mourn her loss; to lay down her anger at the White House so she can heal. As Honig describes Moore’s depiction, Lipscomb is someone whose “agency is undone by loss.”52 On her way to the White House, she encounters a woman in Lafayette Park who is similarly grieving military losses, and they connect over their shared suffering and the finitude of life. They are joined together initially by what Honig calls a “timeless, mourningcentered humanist” ethics. A moment later, another woman comes along, and starts to debate them on the details of their losses and on their moral right to grieve. This “effacement of Lipscomb’s singular loss,” Honig writes, “silences [her] and drives her away from this scene of potential political

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awakening.”53 Lipscomb thus “leaves behind this conflict, gives up her fledgling solidarity with the [first] woman, and turns to the White House.”54 Lipscomb functions for Honig as a figure who captures how ethics can displace from politics; illustrating how grief can feed lamentation and a focus on care for the self, relations to the other, and the fact of shared finitude. Such a focus serves to depoliticize one’s losses and allow the universal “human condition” to dress the wounds, obscuring a “path to action in times of confinement, constraint, or catastrophe.”55 Honig’s point in Antigone, Interrupted is as much about political theory as it is about political actors and “action” more broadly. The “turn to Antigone,” particularly by Judith Butler and Jean Elshtain, is read as a “turn to ethics” that seeks to subdue the divisions of politics, as Honig understands it. The mortalist humanist tendency she critiques seeks unity over contestation, shared mourning over a natalist pleasurebased action, at risk for turning only inward and perhaps “upward” to the universal, but not onward toward “progressive democratic imaginations.”56 To flesh out this point, Honig compares Lipscomb to Cindy Sheehan, another high-profile American mother of a son killed in Iraq. Unlike Lipscomb, Sheehan does not dwell in mortalist humanism, or a mere ethics of shared fragility and grief. Rather, she is radicalized, or “ignited,” by her loss. Honig describes Sheehan as embracing the agonistic struggle, the conflict of politics, and rallying others to “stand on behalf of a dead loved one against the unapologetic sovereign power of the state.”57 Sheehan’s personal loss serves as the site of an actual, not just potential, awakening: she makes it public and shared in explicitly political terms; she claims her agency and makes demands, not keening lamentations. There is an important addendum here, though, that Honig notes. In real life, beyond the cinematic frame, both Sheehan and Lipscomb organized for collective action against the war. Lipscomb’s embodied experience of grief does not displace but rather leads to political action. While she may have turned away from the site of potential political awakening in the scene Honig analyzes, even there she was, on some level, preparing for politics.58 Thus Honig’s engagement with this moment in the film provokes an important question, which inspires my inquiry here: under what conditions does a site of potential political awakening effectively bring us to consciousness? How does our ethical bearing as we encounter asymmetrical power and knowledge, failures of agency and control, desubjugating and humiliating experiences of loss, and a vulnerability and dependency that we cannot disavow ignite a political awakening? Moreover, how might seemingly minor,

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purportedly private encounters with power acting on or by way of our bodies, function as sites for such awakenings, albeit in ways we may not be able to see or know or act on at the time? For while sometimes it is major moments of political and social upheaval that provide experiences that awaken and allow us to practice citizen-subjectivity, my contention in this book, as addressed in the preface, is that it may be much more local and intimate encounters with power and pain, love and loss, that do so.59 And in those moments, we may not fully grasp how the personal will become the political. In this book, the decimated sovereignty of loss and grief is my experiential point of departure, and mainstream medical-institutional practices surrounding birth, death, and illness (specifically veteran PTSD as treated within the Veterans Affairs [VA] mental health system) are my objects of analysis. While importantly different events, birth, death, and illness within the medical-legal-policy-insurance nexus (or the “medical-industrial complex”) all reflect aspects of neoliberal rationality and its faith in choice as a route to control, so as to manage risk, prevent loss, and maximize life. Birth, death, and illness surely have metaphorical resonances with citizenship in dark times. But again, I focus here not on the figurative body politic, but rather on how actual encounters of fleshy bodies with time, power, knowledge, and other people in specific events of exposure can function as sites of political learning and potential awakening. The link between corporeal vulnerability and citizen-subjectivity is thus quite direct. The animating question here (though not one I attempt to answer empirically) is this: how do people undergoing these experiences learn lessons, subtle or overt, about subjectivity and their capacities as agents, and how might these lessons translate for their life as citizens in the polity proper?60 How might the nature of the ethical encounters they experience in those moments—encounters with medical authority, caregivers, family, and their own self in relation to vulnerability—make a difference in how they undergo and emerge from that experience? Here I explore that question in terms of the better or worse versions of humility and autonomy at work in these relational encounters, which are deeply personal, but never merely personal or private. This inquiry is firmly grounded in feminist theory’s basic premise:  the personal is political. Here, this claim has three dimensions. First, purportedly personal realms often have “a politics” to them. When people write about “the politics of death,” for example, they may highlight how schemas of resource allocation, questions of efficiency, economic imperatives, accountability for decision making, legality and liability, institutional policies

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affecting agency and participation, social identity, the effects of structural inequality, and cultural contestation over meaning and values all weave together to produce a context within which the individual patient’s unique preferences and needs are only a very small part of the story. Second, purportedly private experiences can be politicized by those who undergo them. This is the sense of “the personal is political” that Iris Marion Young develops in her critique of the traditional public/private distinction in Justice and the Politics of Difference. In the “heterogeneous public” she defends, one made up of actually embodied people debating their real needs and desires, nothing can be forced into public that one would wish to keep private, and nothing can be relegated to the private that one would offer up for public deliberation. Third, experiences that subjects undergo in purportedly private contexts can have politicizing effects. Here I draw on the insights of critical medical anthropology, which treats health itself as always already political, and sees resistance to the power and norms of dominant treatment paradigms as a form of emancipatory “systems-challenging praxis.”61 If the first point above can be summarized as “sites have a politics to them,” and the second point can be summarized as “subjects can politicize their personal experiences,” this third point can be summarized as “personal experiences can politicize their subjects,” or awaken them to the ways that power works on and through us both corporeally and psychically. To recap: political awakenings are not merely mental events, but embodied processes. Political learning begins with corporeal knowledge, as we become viscerally aware of the complex, co-constitutive ways that vulnerability and autonomy take shape within systems of power and knowledge (including knowledge of and power on the body). Moreover, what we learn at the site of the body has effects for how we relate to our own agency, or our subjectivity as “citizens” seeking meaningful participation in the course of our own lives.

A Brief Detour into Hobbes As I began this chapter by noting, “the personal”—the family, the body, and our primary relationality to and dependence on each other—has always posed a problem for Western political thought, and has been met with particular silences and peculiar counterfactuals within the liberal tradition.62 To offer one classic example: in De Cive (“On the Citizen”), Thomas Hobbes famously asked readers to “look at men as if they had just emerged from the

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earth like mushrooms and grown up without any obligation to each other.”63 Ironically, he who offered us men as mushrooms—emerging as fully formed, autonomous, and independent entities—was one of the only Modern political theorists to write about his own birth. Born prematurely to a mother in a state of panic as the Spanish Armada descended on England, Hobbes tells us in his autobiography that “My mother gave birth to twins: myself and fear.” Corporeal relational vulnerability and its attendant psychic fear is a problem Hobbes sought desperately to solve. And as Julie Cooper maps out in Secular Powers, a kind of humility was pivotal for how Hobbes grappled with the question of self-authorizing agency.64 This is not a book about Hobbes, but the theories of subjectivity, sovereignty, and security that he bequeathed are crucial inheritances—and problems—that we continue to struggle with. In An Age of Risk, Emily Nacol depicts how Hobbes was driven by “an epistemological obsession with the problem of uncertainty,” which he regarded as “the root cause of violence and insecurity.”65 While Hobbes’s theory fails to solve the problem of uncertainty, Nacol sees his main contribution to the liberal tradition as flowing from this failure. “His thwarted efforts,” she writes, “raise a valuable question, which sets an agenda for the thinkers who follow him: Can risk, suffering, and fear ever be truly overcome by political planning and more certain forms of scientific knowledge about collective life?”66 Like Nacol, Corey Robin also traces fear’s history and politics to Hobbes.67 But Robin focuses more on the utility of fear in Hobbes’s political theory, arguing that fear reins in the quest for radical transformative action. It serves as a “disciplining agent” conducive to rationality and humility, and thus (perhaps counterintuitively) is “the instrument of an autonomous self.”68 As I note in Chapter 2, Hobbes’s thin theory of autonomy is typically not terribly compelling to contemporary democratic citizens. And Cooper’s interpretation aside, Robin suggests that the type of humility solicited by Hobbes is at odds with autonomy as we understand it. In Robin’s account, the upshot of Leviathan is that fear maintains peace by begetting quiet complacence.69 As I consider in the following section, one response to corporeal uncertainty is a kind of risk-mitigating managerialism, where fear is mobilized in the service of personal responsibility and prudent self-government, or a logic of control. This is the neoliberal vestige of Hobbes. But there are different lessons to be gleaned from an encounter with fear’s twin. The egalitarianism of bodily vulnerability that Hobbes posited might support a story other than autonomy as independence from each threatening other,

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and humility as submission to authority. Samantha Frost, in particular, has argued for taking the materiality of the body in Hobbes to entail a generative role for intersubjectivity and community as the source of power. Power—getting what one wants—requires taking action for the future that can only emerge out of knowledge of the past, or memory. Frost locates in Hobbes an account of retrospection that is fundamentally embodied and social. Thus, while our bodies expose us to each other, they also empower us with each other. Frost argues that our real problem is with Descartes, who gave us a dualist human subject that crowded out the intersubjective and interdependent “thinking-bodies” that Hobbes proffered, his conjuring of the mushroom-man notwithstanding.70 For if Hobbes was a good political theorist, he was a bad mycologist. As Anna Lowenhaupt Tsing shows in The Mushroom at the End of the World, fungi are actually intensely relational and imbricated with each other and the broader landscape.71 They “pop up unexpectedly,” yes, but their precarious and uncontrolled existence testifies to profound contamination by and collaboration with others, or “transformation through encounter.”72 Tsing does not take on Hobbes directly, but like Frost she reminds us that “Self-contained individuals are not transformed by encounter,” and like mushrooms, humans are no such creatures.

Neoliberalism and Medicalization Hobbes’s problem—managing risk and uncertainty, and channeling fear of loss into a quest for order—remains a preeminent political project today. This project takes on new dimensions and proportions, however, within neoliberal rationality and its imperatives, not the least to manage vulnerability. Following the work of Wendy Brown, William Connolly, Joan Tronto, Jessica Whyte, and others, I use the term neoliberalism or neoliberal rationality to mean something broader than the economic theory and practice of free market capitalism. Neoliberalism as a pervasive cultural logic extends to virtually all domains the market values of efficiency, risk management, privatization, and freedom as consumer agency and responsibility for the consequence of one’s “choices.”73 The entrepreneurial, choice-making subject that individuals are solicited to fashion themselves into reaches from the home to the school to the prison to the clinic and beyond (all realms where we are exhorted to “make good choices”).

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As I  explain over the course of this book, to say that healthcare in the United States bears the mark of neoliberalism is to identify the myriad ways that individual choice and accountability, risk management, and efficiency have come to thoroughly inform how institutional relationships shape up and individual treatments and outcomes get framed and directed. My contention is that some of the sites at which we most viscerally encounter this neoliberal project of managing ourselves so as to mitigate risk and stave off (or shoulder) loss are within clinical spaces. In birth, death, and illness, such pressures bear down on us acutely, as embodied beings who likely aspire to at least some self-determination in these contexts defined by asymmetrical power and knowledge and conditions of exposure, need, and often fear.74 This is particularly evident as birth, death, and illness are increasingly medicalized within mainstream healthcare. In Hospital Land USA, the sociologist Wendy Simonds provides a compelling picture of contemporary medicalization. Simonds defines medicalization as “the dynamic set of processes by which medical authorities, institutions, and ideologies come to (re)organize, (re)define and (re)structure our everyday experiences, culture, and social life” in ways that inform our broader understanding of ourselves and the world beyond the hospital.75 Medicalization is not a natural or inevitable development but rather a contingent historical production. It is not driven first and foremost by the needs of patients or by emergent evidence-based knowledge regarding the diagnosis and treatment of particular diseases. These factors matter, sure. But medicalization, as a complex and adaptable social formation effected by the imperatives and value hierarchies of overlapping systems of knowledge, exceeds medicine and exceeds “the clinic.” Medicalization certainly affects how particular medical events are framed (for example, birth as a natural physiological process that generally needs minimal intervention versus birth as a risky process to be managed and manipulated according to highly specified technical expertise, uniform protocols, and normative timelines so as to mitigate uncertainty for the customer). But it also impacts our relationship to our bodies, information, authority, and conceptions of the well-lived life more broadly (including who has a life worth living, as disability studies scholars consistently remind us, and queer theory also testifies to). We internalize the medical gaze, surveilling our bodies, self-testing, monitoring, charting, reporting on, supplementing, and dosing these precarious machines we are responsible for enhancing and maximizing. In myriad ways we collaborate with and serve as

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carriers of this rationality. Just ask my Fitbit.76 As Eli Clare writes about the medical-industrial complex, It has become the reigning authority over our body-minds from before birth with prenatal testing to after death with organ donation. It shapes our understandings of health and well-being, disability and disease. It establishes sex and gender. It sets standards for normal weight and height. It diagnoses, treats, and manages the human life cycle as a series of medical events: birth, puberty, pregnancy, menopause, aging, and death, each with its own medicine.77

This concept of medicalization might suggest that we become quasi-patients or potential patients all the time.78 Yet, as other medical sociologists have argued, this process is a shifty one.79 The citizen is transformed into an always potential patient, but the patient is transformed into a medical consumer. If “patients” are perceived as passive recipients of care doled out by benevolent medical authorities (“patient” traditionally meant one who suffers without complaint), “medical consumers” embody the distinctly neoliberal traits of “personal responsibility, proactive and prevention-conscious behavior, rationality, and choice.”80 The responsible medical consumer is an entrepreneurial information seeker, socially produced to take an active role in her own care (to a point). As medicalization permeates contemporary American society, the sites at which we are exposed to messages about or representations of medical good subjects are plentiful.81 Thus, soliciting us to medical consumer subjectivity, whereby we internalize the risk calculus and value framework of “Hospital Land USA,” is not especially challenging. We are “primed to take on these characteristics” even before we are diagnosed with a medical condition or illness, and like the consumer-citizen and the consumer-student, the consumer-patient experiences herself as distinctly “empowered” through “choice” to take “control.”82 But what is the “empowerment” offered to us within neoliberalism as a governing rationality? What does it mean to grasp, as Wendy Brown puts it, that “neoliberal subjects are controlled through their freedom,” or as Jennifer Denbow argues, that we are “governed through choice”?83 And how do the heightened experiences of this phenomenon within healthcare, where we are persistently interpellated as choice-making consumer-patients, inform our subjectivity as citizens in day-to-day social and political life more broadly?84 Autonomy is a preeminent liberal democratic value, and in

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mainstream medicine this value gets articulated through idioms of “patient self-determination,” “dignity,” and, above all, “choice and control.” Though an important ideal, autonomy must be rescued from its traditional liberal deficiencies. I’m not the first person to notice this. There has been much work in feminist theory, in particular, aimed at retaining but revising autonomy. Denbow, for example, argues for rejecting Rousseau and Kant’s conception of autonomy as “proper self-governance” by rational, lawgiving, and law-abiding actors, and embracing a poststructuralist version inspired by Foucault and Butler, which entails critique and transformation of restrictive cultural formations.85 I find her account compelling. My distinct contribution to this reimagining, is to argue that a politically revitalized conception of autonomy must be partnered with humility, not in the sense of quiet complacence in the face of authority, but as recognition of our human and historical limitations insofar as we are given in time, space, and fleshliness. More on humility and autonomy momentarily. Here I  simply want to leave the reader with a sense of the bind presented by autonomy as an ideal that democratic subjects rightly incline toward, but a fraught ideal for (at least) two reasons. First, because we are bound to fail at it! If “achieving” autonomy is the mark of good subjects, then we’re in trouble (and some of us more than others). Second, because the ideal of autonomy, as Brown, Cruikshank, Rasmussen, Denbow, and others have noted, is a double-edged sword: autonomy can be a site of freedom and self-creation, but also (and at the same time) a site of governance, or discipline. Our investment in autonomy may, paradoxically, have effects beyond our control. In the context I examine here, institutionalized healthcare, one astute critique highlights this irony by noting that “Medical consumerism makes it increasingly more difficult for individuals to opt out of medical surveillance and intervention.”86 Put differently, “choice and control” can function in ways that render resistance to dominant institutional norms challenging.87 As I explore in the concluding chapter, rarely is exiting the clinic for alternative forms of care recognized by one’s medical provider (let alone insurance company) as a good “choice.” In Rasmussen’s words, “our perception of autonomy, who or what constitutes autonomy, is profoundly shaped by context-specific power relationships.”88 The context-specific power relationships of healthcare, under the pressures of neoliberalism and medicalization, thus provide a rich site at which to explore ideas about humility, autonomy, and citizen-subjectivity.

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Organization and Argument The overview offered so far has introduced the conceptual vocabulary and sites of inquiry for my project. In the chapters that follow, I deploy this admittedly multifaceted set of ideas to map healthcare as a site of politics: a space of vulnerability and interdependence, and asymmetrical power and knowledge, within which we may undergo what I argue is a form of political learning. Through experiences with mainstream medical treatment—or perhaps through deciding to opt out of or “exit” the clinic—our agency, our sense of ourselves as self-determining “citizens,” can be enhanced or diminished. Under what conditions might we expect the latter versus the former? That question I consider through an analysis of the concepts of humility and autonomy, better and worse versions of which, I  argue, can underlie how healthcare encounters shape up and affect our subjectivity. To flesh out this point, I bring together a number of bodies of scholarship. I draw on political theory, of course.89 I also draw on ideas from feminist philosophy, sociology, virtue ethics, medical anthropology, and disability studies. Finally, I rely for the mapping of the contexts I explore on specialized literatures addressing birth (on obstetrics, nursing, public health, midwifery), death (on palliative care, terminal illness, death with dignity), and illness (on veteran PTSD, the VA mental health complex, the history of trauma therapy, natural remedies).90 To provide cohesion across the chapters, which share a conceptual vocabulary but take the reader deep into different domains of the clinic, I organize each chapter around three “problems”—practical, conceptual, and political. First, and most pressing to me as a human, the practical problem:  the way we do these major life events within contemporary U.S.  healthcare leaves much to be desired. Things aren’t going very well (though it is not uncommon to hear people proclaim that we have “the best healthcare on earth”91). Through detailed descriptions of these contexts I paint a picture of contemporary medicine as increasingly hyper-interventionist, a trend clear and consistent across disease/condition, age, social identity, and geography. This managerial, efficiency-oriented, risk-averse hyper-interventionism contributes to the creation of a serious disconnect between what most people navigating birth, death, and illness say they want, and how their experiences actually go. Thirty-four percent of women do not want to give birth by cesarean section, and while most women say in advance that they want to avoid unnecessary interference during labor, many ultimately consent to

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numerous interventions. The C-section is the most common major surgical procedure in the country. Ninety percent of people say they want to die at home, at peace, surrounded by family. But even among long-time terminally ill patients, a shocking number die in the intensive care unit after receiving extraordinary lifesaving measures, often at odds with wishes documented in advance directives. Many veterans say they want mental health treatment for PTSD, but most of those who start therapy drop out after two or three sessions, partly because of the tendency of the VA to favor short-term, intensive exposure therapy (likened by many mental health professionals to “surgery”) over other forms of supportive counseling. Not surprisingly, qualitative studies show that encounters with the medical-legal-policy-insurance nexus at these crucial and vulnerable moments are often experienced as disorienting, disempowering, and even dehumanizing. Despite this fact, in the United States birth, death, and illness continue to be framed within dominant medical discourse (and marketing materials) by a persistent mantra of patient “choice and control.” Choice becomes the signifier for participation yet gets distilled into “best practices” (such as informed consent, the birth plan, advance directives, the patient satisfaction survey) that offer a thin and frequently unreliable version of selfdetermination. “Choice” functions as a vehicle for the focus on outcome over process, risk mitigation versus meaning, and compliance versus collaborative involvement in care. Across these chapters I examine how hierarchies of power and knowledge in doctor–patient relations, as well as hospital policies and cultural imperatives about self-possession, personal responsibility, and masculinity, conspire to produce this disconnect. What operative concepts, values, and assumptions might be brought to light to facilitate our critically examining this practical problem? If we cannot transcend corporeal and psychic vulnerability and interdependence—the human condition, brought into acute focus in medical contexts—then how might we think differently about how we do vulnerability, and how it “does” us? Second, and by way of an answer to that question, the conceptual problem: our inherited concepts of humility and autonomy (from Christianity and liberalism, respectively) are sorely lacking. When humility is conceived as self-denial and disavowal of agency before authority, and when autonomy is conceived as sovereign self-mastery of the free willing individual, humility and autonomy are at odds with each other, and with the fundamental commitment of democracy: collective self-determination. But humility and autonomy matter for contemporary pluralist, agonistic democratic life. Thus

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these concepts stand to be refigured. Through my analysis of birth, death, and illness I map the implications of this conceptual lack for how we think about vulnerability, interdependence, and self-determination within mainstream medical practice, in comparison with the sites to which people retreat in search of more vitalizing and participatory experiences. These “opt out” or “exit” sites are spaces, for many patients, where “choice and control” feels more genuine: the home for birth, hospice for death, and “nature” (or alternative, nature-based remedies) for managing PTSD. I weave together the “practical” and “conceptual” problems here through a reciprocal endeavor, using dominant practices surrounding birth, death, and illness to shed light on the inadequacy of our inherited concepts of humility and autonomy, and using a refigured concept of humility-informedrelational-autonomy to shed light on the inadequacy of those dominant practices. While it is true that both humility and autonomy have garnered attention in recent scholarship, no one has examined them in relation to each other the way I do. One particular contribution of my project, then, is to show that humility needs autonomy, a realm of freedom we can identify and pursue despite never being truly independent. Without such autonomy, in the form of the supported self-direction that feminist philosophers have characterized as relational autonomy, humility would be merely a consolation for relative impotence. And autonomy needs humility, because autonomy is not a onetime achievement but an ongoing and fragile process, a project of claiming over and again our lives as our own. Finally, we need both humility and autonomy, as patients and as citizens—two sites of subjectivity that I theorize here as importantly interrelated. Third, then, the political problem: how might new political subjectivities emerge when we undergo the intense vulnerability and complex decision making that these events of exposure entail, particularly as they are constructed within contemporary medicalization? How do birth, death, and illness function as sites of potential political awakening? To examine this question I build on the work of scholars like Judith Butler, Bonnie Honig, William Connolly, Stephen White, and others exploring the intersection of ethics and politics, and ideas about citizenship—activist, fugitive, radical, democratic, dissident, or “ingenious.” I am interested in these questions of citizenship, particularly the production of what I call citizen-subjectivity, as they function both in the political world properly (the world of collective action regarding public things, in Honig’s words) and the purportedly “private” or personal realm of healthcare.

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Medical anthropologists have generated a rich literature on disease construction, disease communities, health activism, and health citizenship. And theorists of biopolitics have offered incisive critiques of the production, surveillance, management, and politics of “life itself.”92 My project shares many questions with those literatures and draws on their insights. But The Virtues of Vulnerability is written more in the spirit of feminist theory, centering embodiment and inquiring about how consciousness changes, subjection comes into view, and the personal gives rise to the political, understood not immediately as acting in concert with others but as awakening to how power works on and through our corporeality. In the spirit of feminist, disability, queer, critical race, and radical democratic theory, this book is motivated by the normative aspiration for more just, equitable, meaningful, and empowering practices of living, ailing, and dying together. Under what material and ethical conditions do experiences of vulnerability in medical contexts enhance versus diminish our sense of ourselves as agents? How do we make sense of the seductive solicitation to a “choice and control” that feels so illusory? How do these experiences, which roundly resist the desire for sovereignty, teach us about democratic life? If loss of control is conceived in the liberal tradition as a failure to master or govern oneself, and thus as humiliating, birth, death, and illness pose an inevitable problem: they belie the fantasy that if humans only manage themselves well they can transcend chance and exposure, and achieve autonomy from social and corporeal inconvenience and unpredictability. We can’t! This is particularly evident in birth, death, and illness (not to mention grief), but I argue that it is the case in democratic life, too. Humilityinformed-relational-autonomy thus helps clarify what control we can have, in our joint venture with fate and the body, with other people, and with the conditions for self-definition, self-trust, and self-determination. This ethicopolitical disposition of openness to our humanness, with all that entails in terms of failure of intentions and abilities and aspirations, can emotionally equip us for generosity to self and others in the face of our inevitable limitations.93 I argue, therefore, that it has the potential to move us beyond being humiliated, frustrated, or demoralized by such limitations—resentful of our lapses—and empower us to persist in our aspiration for autonomy despite the fact that we simply cannot control everything on our own. I aim to articulate a new vocabulary for democratic politics, highlighting traits that have profound political implications in terms of how citizens aspire, struggle, relate to, and persevere with each other. The book unfolds as follows.

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In Chapter 2, “Beyond Monks and Mushrooms: Humility and Autonomy, Refigured,” I lay the intellectual-historical groundwork for the book by mapping the concept of humility inherited in Western thought from Christianity, and the concept of autonomy inherited from liberalism (with vestiges of Greek self-mastery). After detailing what these inherited concepts are, I argue that they are problematic from the perspective of embodied agency and citizenship-subjectivity, and develop alternative versions that bolster, not undermine, democratic practice. Numerous theorists have noted the relative “abandonment” or “loss” of humility and autonomy in contemporary theory (though, again, rarely addressing them together). My intervention into that discussion is to suggest different traditions we might look to for more vitalizing, and interconnected, conceptions. For a non-theological but deeply relational conception of humility I  turn to Confucian political theory, showing the concrete practices offered across the Analects for cultivating a distinctly political ethic that is not about lowliness, self-denial, or subordination to authority. For an alternate conception of autonomy, I turn to feminist philosophy’s concept of “relational autonomy” as an ongoing process that requires supportive social conditions and networks of relations, not mere non-interference. This chapter develops the conceptual framework and political vocabulary of the project, and begins to flesh out the concept of humility-informed-relational-autonomy. Chapter 3, “Humility, Autonomy, and Birth as a Site of Politics: Choice and Control, Risk and Resistance,” takes us into the body, and the body of the book. Here I consider birth as a site of politics: a space of potential contestation within which new subjectivities or dimensions of agency and freedom might be experienced, or, alternately, denied but desired. How do dominant American birth practices produce conditions within which women can exercise and value freedom, self-trust, and self-determination versus conditions within which such aspirations are trivialized, disciplined, or foreclosed? How can home birth function as a form of “systems-challenging praxis” or clinical “exit” capable of destabilizing the logic of the dominant system and potentially loosening the hold of its norms?94 Building on Chapter 2, I frame my critical political analysis of American birth culture through the lens of humility and autonomy as ways of thinking about “choice and control.” What conceptions of humility and autonomy shape up and do work under the prevailing medical-legal-policy-insurance conditions and managerial logic regarding childbirth in the United States? Again, though, my analysis is reciprocal: I critically analyze childbirth trends through the lens of humility

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and autonomy, and I critically analyze traditional conceptions of humility and autonomy through the lens of childbirth. Through this analysis, I argue that birth, as a site of potential political awakening, is a context within which particular manifestations of humility and autonomy might inform subjugating practices and experiences, but the alternative understandings I advance might inform empowering practices of actual choice and control. Chapter 4 turns to death and dying. In “Arguments over Ends: Hospice and How We Die” I  examine American death and dying trends using concepts elaborated in the birth chapter: humility and autonomy, choice and control. I also add a dimension merely touched on so far: preparing versus planning. The context for my analysis is primarily terminally ill patients in a position to make decisions about—or “prepare for”—how they will die, including whether or when to stop curative treatment and move to palliative or hospice care. In the United States, vast resources are put into end-of-life care and there is resistance when patients want to “exit” to hospice, not to mention physician-assisted dying. How does dying get managed, and how do decisions about death get produced, within the logics that pervade contemporary healthcare:  lingering benevolent paternalism overlapping with increasingly neoliberal concern for efficiency, life maximization, personal responsibility, and risk management? Building on my analysis of birth, I explore how humility and autonomy come into play both for the dying person and the caregivers (kin/intimate or professional) attending to them in death. How we die matters, and I  argue that a relationally supported process of emotionally preparing for dying provides an experience through which we can learn about humility, autonomy, and other conditions important for critical democratic citizenship:  self-knowledge, self-determination, intellectual courage, generosity toward self and others, openness to uncertainty, and the will to persevere in our aspirations despite undeniable fragility. Counterintuitive though it may be, dying ought to be recognized as a site of ethical cultivation and potential political awakening. Chapter 5 takes up illness. “War-Worn Subjects: Veterans, PTSD, and the VA Mental Health Complex” focuses on life-altering trauma borne by many soldiers returning from our recent wars. What Eli Clare has called the “ideology of cure” is conspicuous here, and imbricated with political, economic, medical, psychiatric, and military pressures—the pressures at work in the previous chapters, and then some. I explore how the military’s approach to PTSD has taken shape against the backdrop of an American history of anxiety about illness and disability, an anxiety that is particularly acute within

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debates about managing the injuries of war. Traditionally, “injuries of war” meant physical injuries. Considering PTSD forces us to address this priority given to visible injuries, for which one is not “responsible,” versus “unseen” mental illness, which our culture tends to be prejudiced against largely because of how it destabilizes responsibility, choice, and control. Like in the previous chapters, I explore how humility and autonomy come into play for “wounded warriors” seeking PTSD treatment and for the medical professionals treating them within the particular constraints of the militarymedical complex. How do militarism and masculinity conspire with inadequate conceptions of patient (and doctor) humility and autonomy to produce an assumption of and fatalism about whether “wounded warriors” can be “fixed”? How is the soldier, as patient, as citizen, different in their travels through Hospital Land USA (literally, since the VA is the only governmentrun healthcare system in America), compared to the average civilian seeking treatment in a private, often for-profit hospital, paid for by private, for-profit insurance? Finally, what does it look like when veterans “exit” mainstream treatments in favor of alternative remedies like yoga, marijuana, and wilderness immersion therapy? And what lessons about participation, resistance, and citizenship do veterans-as-patients learn as they travel the path to “cure”? Chapter 6 concludes by returning directly to citizen-subjectivity, “exit,” and the question of the capacity for, and avenues of, resistance by vulnerable subjects. I embark from a claim made by Bonnie Honig, which partly informs my interest in the political potentials of vulnerability. In a 2013 interview related to the release of Antigone, Interrupted, Honig argued that “vulnerable people are not ones who mount the barricades, or put themselves at risk in the streets, or immerse themselves in communities that need help, or release confidential documents.”95 In response to this claim, I ask “Why not?,” and explore her contention by considering what experiences of vulnerability might ultimately enable critical political agency within, and beyond, healthcare. In particular, I examine when leaving mainstream healthcare settings may be comprehended not as “opting out,” a mere economic, practical, or personal “choice,” but rather as a form of distinctly political “exit.” Read in terms of Albert O. Hirschman’s classic framework for thinking about voice and exit, we might find certain forms of leaving “Hospital Land USA” to have political-ethical resources for invigorating the kinds of Antigonian resistance Honig extols. Vulnerability may be precisely the route to agency, but that process requires certain ethical and material conditions. Trends associated with neoliberalism and hyper-medicalization erode those conditions,

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and thus I argue we should attend to their potentially negative impact on our citizen-subjectivity. What resistant practices might contribute to conditions within which ethico-political resources like humility-informed-relationalautonomy could arise from vulnerability, exposure, and loss? And absent those conditions, how can we understand the turn to exit as a political and politicizing act of refusal and not merely consumer choice making?

2 Beyond Monks and Mushrooms Humility and Autonomy, Refigured

Humility has long been marginalized within Western political thought. Understood variously as a character trait, state, capacity, or virtue, its origins within Christianity as a largely feminized disposition of submission, deference, and self-denial likely help explain why scholars interested in modern democratic citizen-subjectivity have found humility to be problematic. When traditionally conceptualized in terms of fleshly lowliness, obedience to higher authority, or even explicit disavowal of our capacity as agents, humility appears in tension with secular liberal democratic requirements of individuality, self-determination, and rational agency. And indeed, a brief survey of the treatment of humility in modern Western political thought suggests that the dominant Christian conception became repeatedly linked to myopia, inaction, and even, with distinct gender undertones, to irrationality. Humility, Hume tells us, is a “monkish” virtue.1 In contrast to humility, autonomy—understood traditionally in terms of the self-governing individual that serves as the moral and political ground of and limit to legitimate authority—has long been a pillar of liberal and democratic theory. Also subject to hyperbole, Seyla Benhabib has described the dominant conception of autonomy, particularly as perpetuated by Rawls and modern social contract theory, as maintaining the Hobbesian conception I noted in Chapter 1, of men as “mushrooms” that spring from the ground independent and fully formed.2 It is not a stretch to say that this autonomy lacks humility, not to mention a realistic account of birth (the topic of the next chapter), or any understanding of mushrooms (as Tsing so eloquently shows). Despite its historically central role in Western political thought, due largely to the rise of value pluralism in liberal theory,3 and feminist critiques of liberal theory,4 some scholars have recently suggested that autonomy, like

The Virtues of Vulnerability. Sara Rushing, Oxford University Press (2021). © Oxford University Press. DOI: 10.1093/oso/9780197516645.001.0001.

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humility, has undergone “abandonment.”5 But if liberal theorists may have failed to sustain a vital discourse on autonomy as the twentieth century came to a close, American society has arguably remained as attached as ever to the popular correlates of personal responsibility, freedom from government interference, and individuality as expressed through “choice” and modeled on the consumer. These neoliberal commitments are often articulated in theoretically impoverished, masculinist, and deeply anti-democratic ways, with worrisome effects on channeling political hopes and anxieties. Like humility, then, autonomy is ripe for rebirth. This chapter seeks to contribute to that revitalization project, and lay the foundation for exploring the use and abuse, as it were, of humility and autonomy with regard to patients and caregivers in medical contexts. In the next three chapters I go into the body, to flesh out these concepts and how they bear on our relations to self and others as we navigate contexts of extreme vulnerability. Here, though, I take up what I described in Chapter 1 as the “conceptual problem,” examining the state of contemporary Western thinking on these two ethico-political dispositions. Refiguring humility and autonomy is important in part because those who write on these dispositions (though rarely addressing both together) disagree about their meaning and, consequently, their implications for democratic citizenship. Humility and autonomy, as we have inherited them in Western thought, are fraught ideals. I aim to offer some useful reformulations here that open up the possibility of seeing humility and autonomy in a new light. One concern motivating this intervention is that these dispositions have tended to be understood as opposed to each other, making each susceptible to being caricatured as an extreme of citizen-subjectivity: the will to blind obedience, at one end, and the will to radical self-mastery and sovereignty, at the other. I want to tell a different story. Humility needs autonomy, autonomy needs humility, and we need both! To make this case, though, and to show that these dispositions are two sides of one coin, we must be willing to venture out of the traditions that have, traditionally, defined how to think about these concepts for political theory. Put simply, it is time we move beyond monks and mushrooms. Or, perhaps more accurately, monks versus mushrooms. For as this chapter suggests, efforts to revitalize humility and demonstrate its democratic importance remain incomplete absent a consideration of the relationship between— indeed, interdependence of—humility and autonomy. This relationship and

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its significance will become more viscerally clear in Chapters  3, 4, and 5, where I discuss giving birth, dying, and navigating illness within and against mainstream medical institutions. Undergoing these major life experiences, through complex doctor–patient relations that get forged under acute medico-legal-policy-insurance pressures, implicates dimensions of humility and autonomy in decision making about care that bring their interdependence into stark relief. The work of this chapter is thus to lay the philosophical groundwork for the rest of the book. The framework of an interdependent humilityinformed-relational-autonomy developed here is one I  will bring to bear in the chapters that follow. My big-picture contention, again, is that experiences of extreme bodily or psychic vulnerability, particularly as they take shape within contemporary institutionalized medical settings, are better undergone when we recognize our fragility and relative lack of control over the course of events, but maintain our impulse to be participatory agents in the process to the extent possible. Striking a meaningful middle path between these dispositions requires thinking through how we understand humility and autonomy in the first place. To foster that thought process, here I first address humility and then autonomy, mapping some of the conceptual terrain of their pasts and presents. I  then introduce the idea of humility-informed-relational-autonomy, which, I argue, is crucially important not only for patients, but for democratic citizens in complex times.

Humility, Lost It is almost commonplace for scholars to begin an inquiry into humility by noting that it has been something of a forgotten virtue.6 The philosopher Nancy Snow begins her 1995 article “Humility” by noting that “Despite the resurgence of interest in the virtues, humility remains neglected by contemporary philosophers.”7 In “The Paradox of Moral Humility,” Stephen Hare similarly says, “Until very recently, modern virtue ethics in the secular tradition was largely indifferent or even hostile to the character disposition of humility.”8 Scholars in positive psychology have noted that, in contrast to forgiveness, gratitude, hope, and optimism, “the study of humility has been stagnant.”9 Political theorist Mark Button begins his consideration of the topic

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asking, “Whatever happened to humility? Once held as a cardinal virtue in the ethical life of the individual, humility seems to have undergone a quiet but steady diminution in value. While philosophers and political theorists have shown a renewed interest in a wide range of virtues of late, the concept of humility has not enjoyed any similar renaissance.”10 The religious historian Kari Konkola makes this same observation in “Have We Lost Humility?,” citing then Chief Rabbi of Great Britain, Jonathan Sacks, who called humility “the orphaned virtue of our age.”11 More than other scholars, Konkola shows that humility has fallen by the wayside even within modern Christian thought. Analyzing contemporary encyclopedias of Christianity such as the Encyclopedia of Religion (1987), the Oxford Companion to Christian Thought (2000), and the Encyclopedia of Christian Theology (2005), Konkola found no entry on humility in any of these texts. Even more popular texts, like Oxford University Press’s series on the seven deadly sins, or William Bennett’s Book of Virtues, offered no discussion of humility. Konkola does not explore why humility has been marginalized in contemporary philosophical, psychological, political, and even religious discourse. But the philosopher Joseph Kupfer has argued that humility has been “neglected by philosophers even as discussion of the virtues has burgeoned because it is, after all, a humble virtue. Humility does not itself motivate socially salutary behavior the way justice and generosity provide particular goals for our pursuit.”12 Numerous other scholars taking the Christian tradition as their touchstone echo this sentiment that, compared to its flashier peers, humility is a “quiet” virtue, one implicated in not-doing or inaction more than action.13 Even more scholars address this question indirectly by pointing to what they see as the arrogance and narcissism of modern secular life, where “the mighty god of ‘self-esteem’ has been elevated to power and permitted to reign unchallenged.”14 We have lost humility as a subject of inquiry, they suggest, because we lack humility as a social value. Perhaps. It is true that, unlike virtues such as empathy, justice, forgiveness, and civility, humility has been slow to garner contemporary scholarly attention outside of theology, religious philosophy, and, more recently, Christian-inflected psychological science.15 But I am inclined to think that this is less because humility is an inconspicuous virtue and more because, in the form bequeathed by Christian thought and practice, humility appears incompatible with core values of liberal democratic citizenship.16 It is thus with this inherited Christian conception that we must start.

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Christian Humility As Konkola describes it, “Humility was a quintessentially Christian discovery.”17 Though the Greeks were fundamentally concerned with virtue, Aristotle’s Nicomachean Ethics, a veritable inventory of the virtues of the day, gives only minor attention to humility. Furthermore, calling pride the “crown of the virtues,” Aristotle treated humility as a defect by which a worthy man “robs himself of what he deserves, and seems to have something bad about him from the fact that he does not think himself worthy of good things, and seems not to know himself.”18 While Aristotle was talking specifically about “undue humility,” he did not cast humility in any form as a virtue. Rather, “proper pride” is the target at which a virtuous person should aim.19 While excessive pride, or hubris, has long been recognized as a dangerous moral failing or a vice in Western religion, philosophy, and political theory (not to mention tragic theater), it was mainly with the figure of Jesus that humility as a cultivated “meekness” was elevated to a distinct and central virtue to correct against the sin of pride.20 In Augustine’s words, “almost the whole of Christian teaching is humility.”21 There are numerous biblical passages on humility that resonate with a softer tone of solidarity among the disenfranchised. Ephesians 4:2, for example, reads, “Be completely humble and gentle; be patient, bearing with one another in love.” Romans 12:16 reads, “Live in harmony with one another. Do not be proud, but be willing to associate with people of low position. Do not be conceited.” Micah 6:8 directs one to “act justly and to love mercy and to walk humbly with your God.” Matthew 11:29 says, “Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” And Philippians 2:3 says, “Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves.” But there are many, if not more, passages that assert man’s sinful nature and personal incapacity, and link humility to humiliation. For example, Ezekiel 16:63 reads, “when I make atonement for all you have done, you will remember and be ashamed and never again open your mouth because of your humiliation.” Ephesians 2:8–9 says, “For by grace you have been saved through faith. And this is not your own doing; it is the gift of God, not a result of works, so that no one may boast.” 2 Corinthians 12:10 says, “That is why, for Christ’s sake, I  delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I  am weak, then I  am strong.” 2 Corinthians 11:30 reads, “If I must boast, I will boast of the things that show

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my weakness.” John 5:30 exhorts, “I can of mine own self do nothing.” And Matthew 18:13 reads, “I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.” And perhaps no portion of the Bible links humility to humiliation more than the book of Job. Beyond scripture, there are numerous Christian writings on humility that emphasize human shortcomings more than human solidarity. This is true in the Catholic commentarial tradition, in early Protestant writings, and even more so in the English and American Puritan commentarial tradition. Drawing on a number of recent accounts of these traditions,22 a basic “history of Christian humility” might be outlined starting with Augustine (354–430), who is pivotal insofar as he gave “humility its lasting shape in contrast to the fundamental human sin of pride,”23 and reinterpreted humility not as an imitative virtue of simply living as Christ lived, but rather a broader and more complex moral-theological virtue of dependence on God as the true source of all one’s accomplishments. This history would further include, among others, John Cassian (360–435),24 St. Benedict (480–547),25 St. Anselm (1033–1109),26 St. Bernard of Clairvaux (1090–1153),27 St. Francis of Assisi (1181–1226),28 St. Bonaventure (1221–1274),29 Thomas Aquinas (1225– 1274),30 Johannes Duns Scotus (1265–1308),31 William Okham (1288– 1348),32 John of Ruysbroeck (1293–1381),33 Richard Middleton (d.1300),34 Thomas a’Kempis (1380–1471),35 Martin Luther (1483–1546),36 St. John of the Cross (1542–1592), Robert Bolton (1572–1631), Richard Baxter (1615– 1691), Richard Allestree (1619–1681), and Jeremy Taylor (1613–1667). Clearly Christianity is best understood as a bundle of traditions sharing certain prominent beliefs, including that there is one God, that Jesus Christ is the son of God and died for Christians’ sin and salvation, that the Bible is the word of God, and that prayer and penance are pivotal to religious practice. There are differences among the traditions, yes. And the collection of names and their footnotes in the previous paragraph makes clear that Christian thinking on humility spans centuries, denominations, and commentarial discourses, so there is no single “Christian” conception of humility. One person’s caricature is another person’s orthodoxy.37 Having said that, however, humility, as a religious virtue central to Christianity broadly speaking, has some common features. Aquinas offers what many regard as a paradigmatic articulation in Summa Theologica, in which he writes, “humility, in so far as it is a virtue, conveys the notion of a praiseworthy self-abasement to the lowest place” and “regards chiefly the subjection of man to God, for Whose sake he humbles himself

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by subjecting himself to others.”38 Humility, further, “suppresses hope of confidence in self ”; “just as meekness suppresses the movement of anger, so does humility suppress the movement of hope, which is the movement of the spirit aiming at great things.” Finally, “humility makes man a good subject to ordinances of all kinds in all matters.” In short, humility entails knowing ourselves to be contemptible, lowly, and capable of anything good only because God has graced us with such achievement. This conception has led one Christian philosopher to succinctly surmise that at first glance “humility may not look very attractive.”39 This is especially the case in the absence of a commitment to a principle of religious unity—for example, if one views humility and pride without any account of grace, or is skeptical about how the innate dignity of being made in God’s image supposedly imbues subservience with beauty. Many modern philosophers made just this move. They effectively secularized humility and omitted the other religious notions relevant to understanding Christian humility. In doing so, however, they played a crucial part in furthering the impression that humility is not a particularly attractive disposition. For example, in the Discourses Machiavelli criticizes Christianity for glorifying “humble and contemplative men, rather than men of action. It has assigned as man’s highest good humility, abnegation, and contempt for mundane things whereas [pagan religion] identified it with magnanimity, bodily strength, and everything else that conduces to make men bold.”40 Spinoza, in the Ethics, described humility as “the sorrow which is produced by contemplating our impotence and helplessness,”41 and concluded that humility is not a virtue because this sorrow is irrational, the result of thinking oneself impotent and not the result of true and accurate contemplation of one’s abilities. Hume, again, famously deemed humility a “monkish virtue,” which should be classified as a vice “everywhere rejected by men of sense” because it fails to advance a man’s fortune in the world or “render him a more valuable member of society.”42 In On Liberty, Mill attacks the “cramped and dwarfed” human beings celebrated within Calvinism, which utterly subordinates human self-will to the will of God. He writes, “there is a different type of human excellence from the Calvinistic: a conception of humanity as having its nature bestowed on it for other purposes than merely to be abnegated.”43 And of course, Nietzsche dealt an acute blow to humility in On the Genealogy of Morals, where he characterizes it as a central part of the will to nothingness, which philosophers adopted from religious authorities as the price of their legitimacy. For Nietzsche, Christian life-denying ideals like humility

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triumphed in modernity, leading “to the conclusion that the earth was the distinctively ascetic planet, a nook of disgruntled, arrogant and offensive creatures filled with a profound disgust at themselves, at the earth, at all life.”44 One can debate whether these thinkers accurately captured Christian humility—there is certainly a hyperbolic element in all of these accounts. They nonetheless were pivotal in cementing contemporary Western discourse about and prejudice against humility, and highlighting its limitations for self-determining, autonomous moral agents acting in complex, secular modern contexts. In other words, humility was successfully cast as the morality of the meek and disenfranchised, the humiliated, the resentful, and the poor. Is it surprising, then, that many contemporary Western political theorists and philosophers dropped humility from the roster of virtues and dismissed it as an important subject of inquiry?45

Humility, Found But wait—the story doesn’t end there! While some scholars have concluded that humility is fatally flawed from the perspective of democratic citizensubjectivity, others argue that it never was, or at least it need not be, associated with self-abnegation or unquestioning submission to authority. Cleansed of the connotations of self-denial or blind obedience, they argue, humility can again become an important virtue; one consistent with (not at odds with) key components of citizenship.46 In this vein, a number of scholars recently have argued for revitalizing humility as a self-expansive, generous, and even foundational disposition for contemporary democratic life.47 This “new humility” is less the opposite of pride, arrogance, or vanity, and more a corrective against cynicism and disengagement, on one hand, and domination, on the other.48 In this approach, humility is seen as a moral strength, which can emotionally equip us to better engage with our fellow citizens and face the complexities and uncertainties of collective life with a capacious and resilient spirit. As a subject of inquiry, humility’s renovation is traceable to a number of recent scholarly trends: the reemergence of virtue ethics in philosophy, the focus on strengths of character in positive psychology, the “turn to ethics” in political theory, and the growing discourse on “vulnerability” across the humanities. What is shared in all of these approaches is a clear desire to recast

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humility as an attractive and empowering disposition for embodied, interdependent humans. This aim seems more compatible with and persuasively pursued through some approaches compared to others. As I examine in this section, there are challenges associated with efforts to revitalize humility as a secular political virtue from within its history as a theological virtue. A number of contemporary writers have undertaken this endeavor, engaging innovatively with Christian thought through the lens of modern life in order to suggest continuity with regard to humility. Some discover descriptions of humility that fit the understanding they seek to defend.49 Some use canonical texts as a point of departure and then reinterpret humility in order to modernize it and make it resonate with a contemporary audience.50 And to a certain extent, I say to these efforts “Why not?” I have no desire to get too deep in the weeds regarding meta-theoretical or methodological issues here, or to boundary-police conceptions of humility. I recognize that contemporary scholars who see humility as a religious-cum-moral-andpolitical virtue worth defending are unlikely to win converts by offering a literal reading of Jesus’s biblical proclamation regarding the blessedness of the meek—the silent sheep who go passively to slaughter, the social outcasts who eschew honor and willingly forfeit the respect of those around them.51 Nor are modern citizens likely to be moved by Augustine’s discussion of humility as obedience, “the mother and guardian of all of the virtues in a rational creature”—one for whom “submission is advantageous.”52 In a society with high regard for personal responsibility and self-esteem, the humble Christian pronouncement, “It’s not me, it’s the Lord” is problematic. In a liberal, democratic society that, at least in theory, champions participatory selfdetermination of competent, autonomous citizens, the proclamation of St. Benedict to “believe and acknowledge oneself viler than all,” or to “think oneself worthless and unprofitable for all purposes,” is a tough sell. So, creative appropriation of past texts seems in order. But it is also worth considering whether current reflections on humility need to be, or benefit from being, linked to prior traditions of thought for intellectual clarity or contemporary legitimacy. If so, to which traditions? As I  just noted, some efforts to reclaim humility for contemporary life continue to situate their analysis firmly within the Christian tradition, providing innovative readings of core texts to reveal previously unrecognized dimensions of this virtue. For some, the goal is to reclaim humility specifically for Christian life, by demonstrating how it informs critical theological engagement versus counseling simple acceptance of authoritative

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knowledge. For example, in “Humility and the Intellectual Life,” Catholic moral philosopher Heidi Giebel argues that self-debasement, while part of the traditional Christian conception of humility, is not the whole story. In fact, though, in Giebel’s account it amounts to a very tiny part of the story, because she interprets self-abnegation, despair, and blind deference as incompatible with other theological virtues, including hope and magnanimity. Giebel suggests that when Aquinas argues that humility “suppresses the movement of hope,” he does not mean hope as trust in God, but as a form of “self-confidence.” Humility is thus compatible with hope. Similarly, humility is compatible with magnanimity when magnanimity means aiming at great things through right reason and with God’s help only, but not when it entails self-satisfaction with grand human aims. A humble human can achieve great honors in this world, but we can never take credit for them as issuing from our own merits. Still, humble people need not constantly decry their utter worthlessness, nor believe in such a thing. Giebel offers interpretations of Aquinas, St. Benedict, and St. John of the Cross, which she argues are faithful to their thought but situate humility within a broader context, in which the concepts of grace, reverence, dignity, and esteem of others overshadow the unattractive connotations that traditionally accompany Christian humility. In her account, pride (“excessive confidence in oneself ”) remains the vice against which humility mitigates. But Giebel views excessive self-confidence as less a sin, and more a psychological barrier to the reception of God’s spiritual gifts. It is in rendering humility something of an intellectual virtue that her work suggests it might appeal to non-Christians, even as her re-reading of humility remains firmly situated in Catholic doctrine. Similarly to Giebel, Mary Keys works within the Christian tradition to develop a conception of humility that is compatible with magnanimity. In contrast to Giebel, or going beyond her aims, Keys’s hope is that by showing the affinity between key religious texts and other nontheological ones, the currency of a traditionally religious virtue can be extended to a secular context. Her first move, then, is showing that Aquinas reworked Benedict’s dictum to “think oneself worthless and unprofitable for all purposes” into a broader principle of simply “acknowledging and avowing one’s own shortcomings.”53 Aquinas, she argues, emphasized the “humanity of humility,” portraying it as a broadly human virtue with important political and social implications because it “inclines its possessor to relate better to other men and women.”54 Aquinas understood “relating better” as subjecting oneself to God and to

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others, which Keys interprets as harmonizing oneself well with the entire community, abiding by laws, and respecting authority. Humility is compatible with (indeed, required for) magnanimity, because magnanimity is not boundless confidence in human capacities but rather “the proper attitude toward the great honors that an agent deserves.” This is an attitude of prudential hope, which she states is important to democratic life. Unlike Giebel, who wishes to revive the place of humility within modern Catholic intellectual life (seeking to make it more broadly attractive, while confessing uncertainty about whether the humility she defends has any political dimension), Keys seeks to develop a “magnanimous humility,” which she argues is important not only for religion but for politics.55 To illustrate her point, and connect it to nontheological sources, Keys refers to Vaclav Havel, who offers “strong experiential support—generally from outside Thomistic circles and often from non-Christians—for the humanity of humility.”56 I am sympathetic with Keys’s desire to show that Aquinas’s humility has applicability today. But her account is not ultimately persuasive. For one thing, it is not clear that Havel figures neatly as representative of a nonChristian approach. He often admitted to having Christian sympathies, and his autobiographical account depends on some transcendent order, if not God per se, to make sense. Where Havel’s approach to humility does seem to be non-Christian, however, is in his understanding of the “vice” that humility combats. He is concerned not so much with pride as with the modern propensity toward irony, cynicism, and complicity through silence. But in this regard, it is not clear how Havel’s understanding of humility resembles Aquinas’s. In short, while Keys successfully presents a conception of humility that is attractive for contemporary political life, she neither makes clear why we need Aquinas for this idea, nor explains how this idea fits within a broader Thomistic conceptual worldview. Can we appropriate a concept from Aquinas that somehow brackets the Christian requirement that humility flow from a reverence for God? Can the Christian vision of humility be secularized? Does it matter whether humility flows from reverence for God or from another spiritual or intellectual orientation altogether? Mark Button takes up such questions. Like Keys, he believes “humility holds underappreciated positive political-ethical possibilities that are not sufficiently accounted for when it is defined as a quality whose presence, at best, marks the (observable) absence of personal ‘vices’ like pride or arrogance.”57 Also like Keys, he seeks intellectual ground upon which to reimagine his more political conception of humility, identifying “alternative

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native sources within the tradition of western moral and political thought” for this project.58 By “alternative” Button means non-Christian. He nonetheless begins with St. Bernard of Clairvaux, affirming my claim that a Christian conception remains the dominant one in Western thinking, because even those who reject this conception take it as their point of departure. For Button, Bernard offers a distinctly relational and interpersonal understanding of humility that is not the “monkish” virtue Hume critiqued. According to Button, Bernard’s humility is a precondition for political friendship and solidarity, for “critical attentiveness, mutual understanding, and generosity.”59 This may be an apt reading of Bernard and, as such, may show how at least one Christian conceptualization of this virtue can provide inspiration for the democratic humility that Button advances. But using Bernard in this way seems to require setting aside the inspiration that Bernard himself drew from Augustine, namely the notion that the self is inherently sinful, fallen, and “nothing” without God (not to mention the promise of heavenly ascension as a primary motive for cultivating humility). Button’s broader point, of course, is that there are “multiple pathways (Christian, liberal, Nietzschean) by which a reworked disposition of humility might be cultivated today.”60 Yet it seems telling that his analysis quickly sets Bernard aside and turns to agonistic political theory. While correctly noting that Bernard is concerned with worldly relationships and motivations, Button seems to run into the same problems as Keys with rehabilitating Christian humility for contemporary democratic politics. Does Button need Bernard’s religious ideas? And does it matter that Bernard’s broader Augustinian web of beliefs threatens to undermine the appeal of the notion of humility Button offers?61 The virtue Button wants to defend—a “cultivated sensitivity toward the limitations, incompleteness, and contingency of both one’s personal moral powers and commitments, and of the particular forms, laws, and institutions that structure one’s political and social life with others”62—is attractive for contemporary social and civic life. Insofar as democratic humility “takes the basic facts of fallibility and limitation, and turns them into an affirmative, public practice of attentiveness and generous listening,”63 it offers a remedy for many ills of modern politics. Button suggests that it’s ironic that this conception of humility flows more readily from Nietzsche than other sources. But in giving voice to the “significant epistemological, political, and ontological factors in our lives,”64 Nietzsche employs a conceptual vocabulary more expansive than, and in many ways at odds with, that

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of Augustinian Christianity, offering a bodily ascetism that is fundamentally creative and vivifying, not life-denying. Button’s account shares with other recent examinations of humility the desire to articulate a conception well suited to contemporary life—more specifically, a relational conception of humility that is defined in terms of vulnerability and interdependence, the quest for social empathy and solidarity, dignity of self and other, and a commitment to political engagement broadly construed. According to advocates of a relational conception of humility, insofar as we experience ourselves as finite beings whose fates are joined and who struggle to make a shared and just world, humility is a foundational virtue because it restrains our potential arrogance, helps us properly assess what we can do given our human limitations, and motivates us to persist in doing what we can when our limitations threaten to demoralize us and privatize our energies. Button argues that this understanding of humility can enjoy widespread support because it draws “on a plurality of overlapping sources for its inspiration.”65 But does this version of the “new humility” need inspiration from and grounding in traditional sources? Recall Keys’s invocation of Havel, which I said I found useful simply because I prefer the concept of humility expressed through Havel’s life and writings, not because Havel manifested some aspect of Christian humility previously unappreciated. Can a relational notion of humility simply speak for itself? Or does it benefit from drawing on a broader web of beliefs generated by a specific tradition or traditions of thought? I believe it does benefit. As I suggested at the outset, humility is at a crossroads. Something about the traditional conception of humility resulted in it being largely dropped from philosophical consideration and civic appreciation, despite the surge of interest in a range of other virtues. While there may be no definitive explanation for the relative neglect of humility, I am persuaded by suggestions that Christianity bequeathed a notion that is largely incompatible with our contemporary democratic ethos, and that Modern political thought caricatured the Christian notion and cemented that image. If humility is to make a comeback as a political virtue, we need to broaden and deepen our understanding of what this disposition entails, examine how it can be cultivated in non-theistic ways, and discuss the other virtues of social and political engagement that it supports. Drawing on an alternative ethical framework—and analyzing the theoretical and practical punch that humility packs within the broader value structure of that alternative

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framework—might help us articulate why humility should be regarded as ethically and politically valuable and “attractive” in the first place. Absent the ability to articulate a conception of humility as an important emotional attitude for beings disposed to each other yet destined to fail at least some of the time in their quest to live well together (beings, in other words, for whom ethical relations are integrally related to political practice), we run the risk that humility will be reduced to either an oppressive vestige of traditional Christianity or a diluted notion of affective modesty among high achievers. The latter is precisely what current psychological research suggests is happening. In contrast to Giebel’s claim that humility, at first glance, does not sound very attractive, one study on whether “people think of humility as a virtue to be cultivated or a weakness to be downplayed” reached the opposite conclusion (sort of).66 Survey respondents viewed humility as a generally positive or “favorable” trait, even a “strength.”67 But the study also indicated that humility was understood as more or less synonymous with modesty. While the sample set for this study included only North American undergraduate college students, a fair number of professional philosophers also conflate humility with modesty, without critically reflecting on what gets lost in treating the terms as interchangeable.68 Namely, as Julia Exline and Anna Geyer show, when humility is viewed as modesty it gets favorable reviews when associated with “situations involving success or accomplishment rather than failure.”69 This humility as the expression of modesty by high achievers—let’s call it the “Academy Awards” conception of humility (“I’m so very humbled to win this award acknowledging how awesome I am”)—might accurately capture the contemporary popular reimagining of this virtue. But such a disposition offers little to equip us to deal with the complexity of contemporary life, or to bolster citizen-subjectivity among vulnerable people under conditions of interdependence and contestation. This interpretation of humility may be popular today, but such popularity comes at a price, because high-achievermodesty is not a particularly critical or political virtue. It neither facilitates democratic conflict nor encourages perseverance in the face of uncertainty, need, apathy, or disillusionment. Humility, then, is a disposition in need of a richer articulation that illuminates the concept’s potential to ground other virtues important for social life and political engagement. Classical Christianity does not get us very far in this regard, and the rebranding of humility within contemporary Christian intellectual traditions is also a fraught effort. Button is right about

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the potential of the relational understanding of humility that emerges from agonistic post-Nietzschean political theory. While Nietzsche himself may initially be a counterintuitive source for reimagining humility, the tradition of critique he inspires captures crucial dimensions of our lived political experience and values, and offers important insights about self-crafting and the embrace of fate and finitude. But there is another tradition—an ancient but non-theistic one, a political but not democratic or pluralist one—that offers a vibrant conceptual vocabulary through which to refigure humility as a political virtue. This is the tradition of Confucian political theory and its foundational text, the Analects.70 While one will not find much explicit discussion of humility as a concept or a virtue in the Analects, the theme is pivotal throughout the text.71 I venture into this likely unanticipated territory for two reasons. First, looking at the Analects highlights how so-called Eastern and Western thinking about this virtue overlap—for example, in their recognition that humility is inextricably linked to relationality and historicity. Second, this engagement suggests how the Confucian understanding may problematize or supplement Western notions, by introducing a certain kind of thinking about history, relationality, and self-cultivation within specific social orders and disorder. In contrast to the Christian conception of humility, which always entails a certain element of otherworldliness, the Confucian conception neither necessitates a turning away from or getting beyond the self, nor focuses on transcending worldly existence. Nor is Confucian humility easily exchanged for modesty—in that tradition it is much clearer how the two are distinct. For these reasons, the Confucian understanding may be more compatible with today’s democratic ethos and may point to a critical and political conception of humility that grounds other virtues crucial to contemporary citizenship, such as righteous anger and proper protest.

Confucian Humility The word humility does not appear in the Analects of Confucius. Indeed, there is no word for humility in classical Chinese. Yet humility is a foundational virtue running throughout the text and can be grasped through the analysis of three pivotal and widely recognized sub-themes—learning and reflecting (the importance of listening and learning as a first move always); realistic self-assessment (the importance of reflecting properly on one’s own

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abilities first, and not on the failures of others or the failure of others to recognize one’s abilities); and human limitations (the importance of fate [ming], or one’s historicity, and thus focusing on what is within one’s control). The theme of learning and reflecting saturates the text. Unlike most Western works of classical philosophy, the Analects takes a dialogical form, in which the “sayings” are often the Master’s response to an ethical question posed by a student. While the text as a whole articulates broad principles of self-cultivation, the individual passages are typically specific and address how a particular person in a particular circumstance should act. For this reason, at times Confucius seems to contradict himself. But it soon becomes clear that one person, who is situated within particular roles and relationships and who has achieved certain ethical abilities and cultural refinement, will be directed to conduct himself in one way. Another person, who is dissimilarly situated or who has different ethical and cultural traits, will be directed to conduct himself differently.72 Very much like Aristotle, Confucius regarded virtuous agents as having the right feelings, “at the right times, about the right things, toward the right people, for the right end, and in the right way.”73 Because virtuous action in the Confucian tradition involves more than a mechanical application of formal rules, one must develop an ethical sensibility or “second nature” that manifests a deeper understanding of what a situation calls for. Proper learning is a precondition to cultivating that sensibility, but it is only an initial step. According to Confucius, “If you first learn as much as you can, then guard against that which is dubious and speak carefully about the rest, you will seldom speak in error. If you first observe as much as you can, then guard against that which is perilous and carefully put the rest into action, you will seldom have cause for regret” [2.18]. Likewise, the text tells us that “Whenever the Master was singing in a group or heard something that he liked, he inevitably asked to have it sung again, and only then would harmonize with it” [7.32]. And according to one prominent passage, a love for goodness, wisdom, trustworthiness, and so on without balancing these virtues with a love of learning can only result in vice [17.8]. The crucial corollary to this teaching is that excessive fastidiousness is also to be avoided. Thus passage 5.20 tells of when Ji Wenzi reflected three times before acting, to which Confucius remarked, “Twice would have been enough.” Proper learning and reflecting requires diligent observation of others who serve as moral exemplars and, in the case of those who come up short, moral warnings. The “reflecting” part of learning entails applying knowledge to

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oneself and one’s situation. It involves opening oneself humbly to true listening, deferring judgment until after sufficient observation has occurred, and then reflecting on how certain lessons are or are not appropriate for one’s particular situation. The commitment to learning and reflecting does not justify delaying action unduly. Nor, importantly, does it imply that one unthinkingly accept the lessons bestowed by others or by tradition. There is no notion of merely deferentially received wisdom within this tradition of ethical cultivation. Contrary to how past and present powers in China may have used and abused Confucianism, the ethico-epistemic humility demanded by the process of learning and reflecting simply cannot be reduced to blind obedience to authority. Rather, it entails a respectful but constructive (or interpretive) engagement with norms. The topic of learning and reflecting naturally leads to the theme of selfassessment. As passage 7.22 says, “When walking with two other people, I  will always find a teacher among them. I  focus on those who are good and seek to emulate them, and focus on those who are bad in order to be reminded of what needs to be changed in myself.” Where the traditional Christian conception of humility is taken to entail a general disposition of self-abnegation and the avowal of permanent lowliness or subordination, the Confucian notion of self-assessment makes no such demand. Numerous passages show that Confucius is deeply critical of feigned humility. He also opposes uncritical or rote humility, even if it is sincere. The point of learning and reflecting is not to internalize some self-effacing truth that we are by nature fallen, unworthy, or incapable; nor is the point to transcend a focus on the self. The point is rather to determine what a situation demands of us, and to understand our limitations and strengths so that we can improve our ethical weaknesses and harmonize ourselves with the situation at hand. Proper self-assessment, according to Confucianism, arises from an attuned and realistic understanding of the larger context of earthly relations and of one’s abilities. From such understanding, one decides how best to cultivate and conduct oneself. Such realistic self-assessment is part of a disposition of humility, even though a person may discover that he or she is superior with regard to a particular ethical trait or merit hierarchy. In some passages Confucius seems almost boastful about his ethical stature and about the transformations he could achieve if given a position of responsibility in government. While Confucius repeatedly denied being a sage, he also recognized that it would be disingenuous to downplay his wisdom simply so as not to seem elitist. Having said that, most examples

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in the Analects of people confident in their abilities or ambitious in their aspirations are offered as lessons about arrogance. Not unlike Christian moral reformers, Confucius lamented that most people did not suffer from undue humility. Arrogance, however, poses a pragmatic problem more than it reveals man’s sinful, hubristic nature.74 Unrealistic confidence blinds one to the limits of one’s abilities when deferring to someone more qualified might serve everyone better. From a Confucian perspective, realistic humility is a moral strength because it empowers one to discern more judiciously how one can best contribute. Of course, sometimes historical circumstances thwart the efforts of even the most ethically cultivated person. This was Confucius’s perception of his own situation, given the corruption and disorder that prevailed during his lifetime. If realistic self-assessment entails accurately evaluating our place within a merit hierarchy (perhaps at the bottom, but perhaps at the top), appreciating the role of fate entails recognizing our historically determined human limitations. Reflection on fate helps us understand what is within our power to change and helps us modify our aspirations when external conditions require that. According to one interpretation of the Analects, the theme of fate sometimes morphs into a fatalistic attitude that risks being depoliticizing and conservative. If all is predetermined, then what can any person do to change the course of events? (Within the Christian tradition, one familiar response to this dilemma is “Let go and let God.”) Whenever the Confucian theme of fate has been interpreted as “destiny,”75 one’s choices appear limited to embittered frustration and worry, on the one hand, and blithely accepting the hand history has dealt, on the other. Yet such an overly deterministic interpretation of “fate” fails to capture the kind of humility that Confucius counsels in the Analects. He teaches not to simply turn inward or to cultivate a joyful acceptance of subjection to external forces. Rather, Confucian humility entails understanding that while our actions often will have only a limited impact, we are nonetheless not permitted to become demoralized and transfer responsibility to someone else (human or transcendent). Properly grasping our historical moment does not to let us off the hook because we are merely limited humans. Instead, we recognize how we can constructively engage fate so as to influence conditions, or at least resist being complicit with the forces that obstruct the return of the Way to the land. From a Confucian perspective, we cannot become martyrs, and we cannot simply opt out.

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In this vein, the Analects offers numerous lessons on when to exit a corrupt ruler’s court [11.24], how to resist political compromise [9.13], when to leave a state in protest [15.1], how to properly deliver a deserved insult [17.20], or when to challenge one who rules by personal whim [11.17]. In these passages, we can see that humility is the dispositional starting point for undertaking actions in an ethically appropriate way. Humility disposes us to engage with others and our conditions in a way that is neither submissive nor self-righteous. The type of righteous indignation that is grounded in humility, then, can be understood as something of a mean between doing or saying nothing and desiring to be radically transformative and glorious in our deeds. Confucian humility, moreover, not only enables one to properly channel righteous indignation; it demands that one express such indignation. The limitations posed by our fate neither absolve us from agency nor justify an exclusive preoccupation with the personal. When we encounter the ways in which we are historically given, finite beings limited in our capacity to simply will change, we also recognize the ways in which we are not limited, and this calls us ethically to do what we can. Humility is thus a foundational virtue in the Analects. It functions as the dispositional soil needed for the cultivation of other important virtues of social and political engagement. The Confucian themes of learning and reflecting, realistic self-assessment, and historical human limitations serve as a lens though which to understand how humility enables and supports a type of political engagement that is principled yet also pragmatic. The Analects encourages one to appreciate the limits of our control over the course of social change. According to the Analects, “If the Way is being realized in the world then show yourself; if it is not, then go into reclusion” [8.13]. Such an attitude, if taken to an extreme, could be atomizing and depoliticizing. But Confucius criticizes excessive fastidiousness, noting that “Worthy people go into reclusion because the age itself is disordered; those next in worth withdraw because their state is disordered; next still are those who withdraw because of a discourteous expression on their ruler’s face; and finally there are those who will withdraw at a single discourteous word” [14.37]. In Confucian thought, the disposition of humility retains a critical edge—the source of its moral strength—by enabling one to comprehend the ways one can and cannot struggle for ethical and political transformation within the given worldly conditions, and to persevere in bearing witness against impropriety and corruption.

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Unlike the traditional Western conception of humility, then, Confucian humility is a disposition that must be fostered in relations with others, in a broad range of contexts that functions to trouble the modern distinction between personal and political, or political and ethical. Humility is not a “passive” virtue. It is a virtue in action, and it is importantly action-guiding. Having said this, not unlike in the Christian version, humility for Confucius was part of protecting a moral order at risk of corruption and demise during his life. His hopes were fundamentally conservative ones, and thus the conception of humility we get from the Analects, while important, is not sufficient. As I  noted at the outset, and now turn to directly, for democratic citizen-subjectivity and political awakenings, the quest for autonomy is an essential partner to the capacity for humility.

Autonomy, Abandoned? Unlike humility, autonomy is a foundational dimension of liberal democracy. Alongside equality, the commitment to self-governance or selfdetermination is something that citizen-subjects, and political theorists, should seemingly not be ambivalent about. But as John Christman and Joel Anderson, Mark Button, Marilyn Friedman, and others argue, autonomy has undergone its own benign neglect in recent decades. What accounts for this? In this section I touch briefly on an array of critiques of autonomy within liberal theory, and then turn my attention to feminist critiques of the ideal of autonomy and efforts to refigure autonomy relationally. I  conclude by considering recent critical engagements with the concept of relational autonomy, which argue for focusing instead on independence, freedom, and non-sovereign agency. I ultimately argue for sticking with the concept of autonomy, in large part because of its centrality within the healthcare contexts I examine in Chapters 3, 4, and 5, where concepts like “freedom” make less sense. But I also think a focus on autonomy is worth preserving because of the work it does as an important political aspiration. However, I incorporate certain insights of the critiques I consider, and allow them to ground my account of why autonomy needs humility, a concept virtually no accounts of autonomy—even relational autonomy—include. Within liberal theory itself, Mark Button has suggested that increasing conditions of and scholarly engagement with value pluralism, or a belief in the diversity and incommensurability of the good for humans,

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have rendered autonomy merely one among other legitimate values to be respected in liberal democratic societies.76 Effectively making toleration more fundamental than autonomy, value pluralists such as William Galston have gone so far as to argue that a principled commitment to autonomy entails a “kind of homogenizing pressure on ways of life that do not embrace autonomy.”77 Also from within debates about liberalism, communitarian critics like Michael Sandel, Alasdair MacIntyre, and Charles Taylor have argued that liberal autonomy is grounded in a problematic understanding of the relationship between the individual and the community, and a conception of the self that fails to grasp the depths of our situatedness. Civic republican critics like Philip Pettit and Michael Smith, Quentin Skinner, and others have argued against liberalism’s inveterate neutrality and default focus on non-interference, supplanting the foundational concept of autonomy with a more intersubjectively grounded conception of freedom. Within particularly thick accounts of this sort, scholars go so far as to argue that freedom must be evaluated in terms of the right or wrong motivations from which an action stems. These orthonomous accounts argue that “right rule” or good governance is ultimately more important than mere “self-rule” or self-governance. Echoing some of these concerns, a second line of scholarly attack on autonomy has been feminist theory’s response to Western political thought’s long tradition of treating autonomy as an ontological or metaphysical status—an attribute of agents—and of predicating autonomy on an atomistic, rationalist, and, importantly, masculinist conception of the subject.78 There are numerous targets for this critique, as what we might call the self-mastery or sovereignty version of autonomy has sources that are pre- and non-liberal as well as liberal. But John Rawls was something of a galvanizing figure.79 In what are now classics of feminist thought, scholars systematically (albeit sometimes implicitly) critiqued Rawls, as the modern revitalizer of the social contract tradition, for his conception of the subject as an abstraction—a stripped-down, self-interested, independent, rational deliberator—and for his principled exclusion from the “legitimation pool” of anyone who failed to meet his criteria of reasonableness.80 In mapping the feminist response to Rawls, and, again, the Hobbesian conception of the self-generating man as “mushroom” that he preserved, we might take Jennifer Nedelsky’s work as a touchstone. Her 1989 article “Reconceiving Autonomy” was one of the earliest articulations of a relational conception of autonomy,81 and this text, published together with newer chapters in 2011 as Law’s Relations, remains a

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central focus of critical engagement in what we now know as the robust and ever-increasing “relational autonomy” literature.82

Autonomy, Reconceived In “Reconceiving Autonomy,” Nedelsky argues that “we need a language of self-determination that avoids the blind literalness of the liberal concept. We need concepts that incorporate our experience of embeddedness in relations, both the inherent, underlying reality of such embeddedness and the oppressiveness of its current social forms.”83 In both the 1989 version and slightly revised 2011 version of this essay, Nedelsky sketches the history of the “legal and political ideology which identified autonomy with a private sphere defined and bounded by property.”84 Even figured within the classic liberal symbolism of private property, however, Nedelsky makes clear that the challenge for autonomy is never simply where the line of non-interference is drawn, between individual property rights and the collective interests of the state. Rather, property is dependent on the state for its guarantee. Extending from this context, she argues that a relational theory “denies that autonomy is fundamentally about independence, so it challenges the claim to autonomy by those who base it on their (usually illusory) independence.”85 Autonomy is not simply non-interference and it is not simply the subjective feeling of being free. Rather, reconceiving autonomy relationally means recognizing how power imbalances, social hierarchies and stereotypes, and institutional norms all contribute to the conditions within which autonomy is fostered and enhanced versus impeded; contexts where autonomy is genuinely experienced versus denied. While dependency itself is inconsistent with autonomy, autonomy still is not the same as “independence,” when that concept connotes absence of dependence and thus ignores the relational nature of the self. Marilyn Friedman has recently taken stock of Nedelsky’s contribution to feminist autonomy theory, arguing that she posits as “dominant” an approach to autonomy that no philosopher actually holds. This is a point Friedman has made elsewhere as well, taking feminist theory more broadly to task for treating mainstream philosophical treatments of autonomy as a “monolithic enterprise.”86 But while Friedman is right that there is variation across liberal theory, I am inclined to agree with Nedelsky and others that the idea of autonomy as freedom from the collective (and as more or less oblivious to

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the family) “continues to haunt and shape both theory and practice in the United States.”87 This tendency may reflect “practice” more than “theory”; thus, Friedman might be right that Nedelsky aims her critique at popular conceptions of autonomy more than philosophical ones. But as Lorraine Code argues, this liberal individualist version of autonomy and the ideals it advances has important symbolic effects in the form of the “autonomyobsession” it supports within the culture more broadly.88 Thus Code suggests that theory and practice, or philosophical and popular conceptions, cannot be neatly disentangled. In the introduction to their pivotal volume Relational Autonomy, Catriona Mackenzie and Natalie Stoljar have described the pervasive ideal in question as “the self-sufficient, rugged male individualist, rational maximizing chooser of libertarian theory.”89 This description is undoubtedly a bit of a caricature, but popular and political discourse in the twenty-first century has leaned heavily on the ethos it captures, and mainstream philosophical discourse on autonomy has not, until recently, done enough to complicate or dispel that image.90 Friedman’s real concern is that this atomistic, masculine figure fails to be a useful critical focal point if it encourages feminist theorists like Nedelsky to avoid embracing a commitment to independence as part of an account of autonomy (or, worse, abandoning autonomy altogether). Clearly, in “reconceiving” autonomy Nedelsky affirms the importance of this concept for liberal and legal theory. And despite their differences in terminology— Nedelsky arguing against “independence” but maintaining the importance of normative individualism, and Friedman advocating for “independence” as an important emancipatory ideal—they are more alike than different in their broader aim and approach. And thanks to two decades of debates like the one between Nedelsky and Friedman, this is an approach to rethinking autonomy that is now firmly established and widely shared. As Andrea Veltman and Mark Piper put it, in what is essentially a sequel to Relational Autonomy, “Feminist accounts of relational autonomy have now changed the landscape of autonomy studies, shifting philosophical thinking about autonomy toward the social and interpersonal dynamics that shape agency, desires, and choices.”91 What the long-running conversation between Friedman and Nedelsky shows, however, is that under the umbrella of “relational autonomy” there is plenty of room for disagreement. I will return later to debates about self-determination versus independence versus freedom versus non-sovereign agency as the ultimate aspiration. But here I want to map in greater detail one particular debate relevant

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for subsequent chapters, namely between those favoring a procedural account of relational autonomy, and those advocating for a thicker, arguably more demanding, substantive account. These positions—procedural and substantive—in many ways track the current debate in feminist theory over “choice feminism.”92 Choice feminism aims to “reject judgmentalness” and “be inclusive and respectful of the wide variety of choices women make.”93 Debates over feminism as “choice” raise crucial questions about whether all options pursued, at least semi-reflectively, by a woman who calls herself a feminist thereby qualify as feminist choices. Under the banner of choice and empowerment, can women who pursue careers in sex work, undergo cosmetic surgery, flash their breasts for Girls Gone Wild, embrace traditional family hierarchies, accommodate (or even desire) sexual submission, or elect to give birth by cesarean section to preserve vaginal tone simply declare those choices off limits to the scrutiny they evoke from many feminists? Or does this movement to equate freedom with unencumbered choice effectively evacuate feminism of the substantive content—gender justice and equality— without which claims about self-determination cease to have much political force? Does “choice feminism” forfeit a critique of the still oppressive and unequal conditions of patriarchal capitalism that may give rise to certain choices? I return to these questions surrounding “choice” in Chapter 3, in the context of an examination of debates about choice and control in childbirth. Like choice feminism, the procedural account of relational autonomy involves neutrality with regard to the content of any decision, focusing purely on the process of decision making as a minimal criterion according to which an agent’s actions can be called autonomous. Accounts of procedural autonomy range from extremely thin (I act autonomously if there is no explicit external coercion of my action) to somewhat thicker (I act autonomously if there is no explicit external coercion of my action, if I have access to adequate information about the consequences of my action, and if I possess the basic cognitive ability of minimal reflection on my choice). Further down this continuum, Diana Meyers has offered a “modified procedural approach” to relational autonomy, basically impartial about content but requiring what she calls “autonomy competency”—the “repertory of coordinated skills that makes self-discovery, self-definition, and self-direction possible.”94 Meyers sought to get beyond the traditional account of autonomy, which makes it a matter of negative liberty (or free will exercised by a fully formed and independent agent), and conceptualize autonomy as something we develop through its exercise in community with others.95 In light of the feminist

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critique of Rawls, the benefits of Meyers’s approach are clear: it acknowledges the fact of human cognitive and emotional limitations and social embeddedness; one need not rid oneself of all other-than-rational consciousness, uncertainty, desire, or relatedness to act autonomously. Yet Meyers also resists reducing individuals merely to the conditions of their situatedness. And unlike purely procedural accounts, her approach offers certain normative aspirations for the self, including a personality that is integrated and harmonious as reflected in a holistic and coherent, if always evolving, life plan. Within this account, desires or preferences that demonstrate autonomy competency are worthier of satisfaction and respect than those that “merely reflect uncritical acceptance of social norms or expectations.”96 A key point Meyers illuminates, then, is that our desires and preferences themselves must be acquired and developed autonomously. Socialization often deeply conditions our preference formation, inculcating in us alien beliefs, attitudes, and values that can ultimately undermine access to our “authentic” self, and reflective knowledge of what that self wants.97 As Natalie Stoljar has argued, while we may value the idea of neutrality with regard to the content of one’s actions, there still might ultimately be choices that evoke our “feminist intuition”—the gut feeling that some actions do not register as autonomous, because they can only be grasped as the effect of having internalized warped and oppressive norms of femininity. Paul Benson similarly identifies how internalizing cultural stereotypes of femininity does violence to one’s sense of self-worth and one’s basic imagination (for example, of a radically different system of gender and power). This eroded imagination has dramatic implications for a person’s ability to rationally consider taking certain actions over others. Rational reflection under conditions of oppressive socialization may lead to actions that, while procedurally autonomous, strike observers as lacking “real” autonomy.98 Like critics of choice feminism (and like Meyers), Stoljar and Benson highlight the inadequacies of a purely procedural account. Consequently, both argue that certain weak substantive criteria must be imported into the analysis of social conditions and of the mental dispositions of the self that acts within them. While Stoljar and Benson appreciate the significance of value neutrality, they also express a deep hope that reformed conditions and dispositions (i.e., culture and consciousness) would effectively render certain decisions undesirable in the eyes of an autonomous person. In particular, they argue for the importance of self-worth, self-trust, and self-respect, conceived as skills, to invoke Meyers’s terminology again; and skills cultivated by

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and through our social embeddedness, or our relations.99 This point is important to my overall analysis, for as I explain at the end of this chapter, the cultivation and use of such skills requires, at the very least, a certain humility. Relational autonomy, then, is a form of positive freedom that demands more than merely a lack of external constraint to flourish. It requires a conception of the just society as affirmatively valuing and promoting effective agency, for example through “processes involving educational, social, and personal resources.”100 Positive conceptions of autonomy need not be perfectionist conceptions, yet neither can they remain neutral with regard to the good. For unlike negative freedom, they take a kind of agency as a normative aspiration, namely agency that involves the freedom to express or actualize what one takes to be her “true” self through her chosen actions. While all relational autonomy theorists posit more than a superficial connection between autonomy and relationality (i.e., more than that we live in a world with others, and our autonomous acts take place in society), some maintain that the connection between autonomy and relationality is limited to being causal (i.e., social conditions and relations foster, or “cause,” the development of autonomy competency), while others go further, arguing that relationality is a constitutive dimension of autonomy. Here, relational autonomy is seen as more demanding and compelling because self-perceptions, self-trust, selfrespect, and other substantive criteria and normative ideals require others to form, endure, and be put into practice.101 Autonomy on this constitutive account is not, as Friedman summarizes (and rejects), “merely the (non)social result of certain other social conditions,” but rather is “inherently social in its very nature.”102 The strong, constitutively relational theory of autonomy that has developed through the “procedural versus substantive” debates has led some feminist relational autonomy theorists to come full circle and “rethink relational autonomy.”103 For Friedman, relationality itself can be vexed. Some relationships foster autonomy, but some clearly undermine it. Moreover, sometimes we can act autonomously despite our relationality, not thanks to it. Thus, to go back to her debate with Nedelsky mentioned earlier in the chapter, an ideal of independence must always remain part of a concept of autonomy, and autonomy must be understood as causally social but not constitutively so. Nancy Hirschmann similarly argues that “whatever desires, preferences, and abilities our relationships may have led us to have, we need to act by and for ourselves. Even when we act wrongly, perhaps even against our own interests, we must be free to so act.”104 Hirschmann’s worry about

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the idealization of relationality stems partly from the origins of the concept of relational autonomy in object relations theory, the legacy of which can be an “uncritical favoring” of feminine connectedness over purportedly masculine “reactive” individuation. Like Friedman, Hirschmann illuminates a potential paradox that has shaped up in relational autonomy theory: independence, individuation, or what she explores under the rubric of “freedom,” risk being devalued, while proper autonomy becomes not only an ideal or achievement, but almost a duty for good relational subjects. Where Friedman argues that a commitment to independence is crucial, Hirschmann argues that a theory of autonomy requires a theory of freedom as something broader, more flexible, less restrained, and less susceptible to importing certain normative values. As she writes in The Subject of Liberty, “Feminist freedom says that others can, and indeed should, ask me questions. But only I can come up with the answers, nobody else can answer those questions for me. Autonomy theorists, for instance, as well as positive-liberty theorists like Rousseau, tend to provide external standards for what answers are legitimately autonomous.”105 The focus on criteria, procedure, self-knowledge, and evaluation that defines much relational autonomy theory has implications, and problematic ones in Hirschmann’s account, for “how we theorize the choice-making subject.”106 A recognition of our fundamental relationality certainly represents an improvement over the self-generated, isolated man-as-mushroom inherited from the liberal tradition. But Hirschman, Friedman, and others reconsidering the relational autonomy framework suggest that an underlying quest for certainty and validity, authenticity and rationality continues to attach to choice making in a way that can function to undermine freedom as the ability to do what I want, not what I should (or should want). Put differently, Hirschmann in particular pushes against relational autonomy’s focus on the dichotomy of outcome (autonomous; not autonomous) and stresses instead the messiness of choice making and the centrality of struggle, and importantly a struggle that is mine, in the quest for freedom. In exploring Hirschmann’s reconsideration of relational autonomy here, I  do not want to exaggerate the distinction she offers between “freedom” and “autonomy.” Despite her important critiques, she certainly still remains more firmly in the relational autonomy ambit than out of it.107 Again, her point is not that we should abandon autonomy, but rather that relational autonomy must be considered “in tandem with freedom,” as the two are not interchangeable. As mentioned earlier, one reason I continue to work primarily within the language of autonomy is because that is the central term in the

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healthcare contexts I examine. “Patient freedom” is not how the discourse has shaped up. Indeed, in a medical institutional context where one enters as a patient, there is likely already a sense of unfreedom at work. This is true because of the unwilled nature of illness and death, as well as the limited range of choices for how to undergo typically willed events like childbirth. Few people see the clinic as a realm of personal freedom. This is perhaps what makes protecting patient autonomy all the more important.108 Hirschmann’s insights are important for me here, however, because they bring into view the absence of a “tragic” ethos within much of feminist philosophy’s discussion of relational autonomy. What Hirschmann captures in her attention to the messiness of lived embodiment, sociality, contingency, and struggle is the idea that we are bound to “fail a variety of autonomy tests and measures.”109 While sometimes we fail because of external conditions, domination, dishonesty, paternalism, misrecognition, or lack of social uptake, sometimes it is because of our own conflictual desires and competing self-perceptions, which may impact what we think we care about and why (and about which we may be wrong, but only know that in hindsight). For Hirschmann, the self itself is worked out, over and over, at the site of the body and through practices of freedom; it does not come into being and exist tidily prior to them, as is often at least implicitly assumed in autonomy theory. All this is to say that in our quest for autonomy, we need humility. We might even say that humility is one of the substantive internal criteria or dispositions that enhance our autonomy competency and connect us to our humanness, and to existential humor (over humiliation) when we fail. Humility-informedrelational-autonomy may be just that ethos that helps us persevere in making our lives our own, in relation with and in concert with others, as well as developed against others and against norms, and with precarious success.

Conclusion This chapter has endeavored to lay out the conceptions of humility and autonomy that we have inherited in Western thought from Christianity and liberalism, respectively. According to traditional accounts, humility and autonomy are at odds with each other:  the former conceived in terms of passivity, self-denial, and obedience to higher authority, and the latter in terms of sovereign self-government and a desire (even responsibility) to actively direct our own life by making independent, rationally reflected, and

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unimpeded choices. By looking to other traditions—Confucian political thought, for humility, and feminist philosophy, for autonomy—I sought to highlight alternative versions of these important political dispositions. Crucially, the more attractive and democratically vitalizing forms of humility and autonomy I outlined here can be grasped not only as not opposed to each other, but rather as actually entailing or needing each other. Because autonomy is relational—a process and project that shapes up within contexts and relationships that are subject to historical forces, social conditions and power dynamics—it is vulnerable. In our quest for autonomy, particularly when it takes the form of a desire for choice and control, we are bound to fail at least some of (and possibly much of) the time. Humility helps. But humility can’t have the final word, because as democratic citizensubjects we must persevere in trying to chart a course that is ours, both as individuals and collectively. So for humility to “help” when we find ourselves failed as such agents, it must function to clarify what we can do as limited humans, and empower us to keep working to do it. In this way humility loves freedom; it does not resign us to bondage. To capture the idea that autonomy and humility need each other, or are interdependent, I describe this disposition as “humility-informed-relationalautonomy.” Hira! In Chapter  6 I  nod to Hira as a figure of perseverance despite human and historical limitations; a sort of matron saint of finding vulnerability somehow vivifying and connecting, not enraging, humiliating, or immobilizing. Here I will merely allude provocatively to this antihero, neither monk nor mushroom. But her presence haunts the following three chapters, as the merely skeletal idea of humility-informed-relationalautonomy offered in this chapter gets fleshed out, or specified and elaborated, through my engagement with birth, death, and illness. As Nedelsky puts it in Law’s Relations, “When we see the body in all its dimensions—as a source of joy and of intimacy, as a part of the interdependency of all living beings, as that which links us to the cycles of death and decay and rebirth, as a source of suffering and limitation—the body offers an ideal focus for exploring the puzzle of autonomy.”110 It is thus into the body that I now take us.

3 Humility, Autonomy, and Birth as a Site of Politics Choice and Control, Risk and Resistance

The ideal of sovereignty is also implicit in much of the freedom talk that is everywhere in American popular culture. Freedom for us almost always refers to the freedom to choose, and thereby to exercise control over our actions and our destinies. Whether it concerns health care options, or reproductive rights, or cable TV providers and auto insurance, our ability to control our action through the exercise of choice is, we think, the measure of our freedom. —Sharon Krause, Freedom Beyond Sovereignty1 Autonomy as control is an illusion, but the danger it poses is real. —Jennifer Nedelsky, Law’s Relations2

As noted at the outset of this book, Western political thought, from the classical Greek era to our own time, is notorious for relegating bodily and family matters to the private sphere. Contemporary feminist and critical political theorists have worked to counter this impulse, and disability studies scholars have always taken lived embodiment and the “messiness of bodily variety” as their point of departure.3 Yet even as these discourses acknowledge the centrality of the body, vulnerability, and relationality for social and political theory, they continue functionally to disavow birth as an important experience through which to explore political and ethical questions. Within feminist theory, there are discourses on motherhood, mothering, new maternalisms, pregnancy, surrogacy, and reproductive rights, technologies, and freedom.4 Within political theory, Hannah Arendt importantly revitalized the concept of natality in relation to citizenship and collective The Virtues of Vulnerability. Sara Rushing, Oxford University Press (2021). © Oxford University Press. DOI: 10.1093/oso/9780197516645.001.0001.

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world making,5 and some recent scholarship in philosophy and political science addresses the politics (or anti-politics) of parenthood.6 Within philosophy, biomedical ethics has raised the question of “respect for persons” in various contexts of knowledge, dependency, and authority, including, very occasionally, the delivery room. But to really theorize about birth one must piece together a literature across multiple disciplines, including sociology, medical anthropology, gender studies, law and social policy, public health, psychology, history, nursing, midwifery, and obstetrics. In doing so, what can one glean about how and why birth matters, ethically, culturally, and politically? In this chapter I argue that birth is a site of politics: a space of asymmetrical power and knowledge, where identity and values are always in play, and thus a site ripe for potential contestation within which new subjectivities or dimensions of agency and freedom might be experienced, or, alternatively, denied and desired. How do dominant American birth practices and policies produce conditions within which women can exercise and value selfdefinition, self-trust, and self-determination, versus conditions within which such impulses and desires are trivialized, disciplined, or foreclosed? I frame my critical political analysis of dominant childbirth practices in America through the lens of humility and autonomy, which I addressed in detail in the previous chapter. My aim there was to persuade readers that humility and autonomy are two sides of one coin and they are, or should be, central to contemporary democratic theory and conceptions of citizenship in complex, diverse, and pluralist polities. With regard to contemporary childbirth in the United States, then, I am interested in what conceptions of humility and autonomy shape up and do work in the prevailing “medical-industrial complex.”7 By this, I mean the medical-legal-policy-insurance nexus, particularly as those overlapping systems and the conditions they foster are informed by an increasingly neoliberal logic of risk avoidance, managerialism, and personal responsibility. My analysis here is importantly reciprocal:  I critically analyze trends in childbirth through the lens of humility and autonomy, and, continuing the work of the previous chapter, I  critically analyze traditional conceptions of humility and autonomy through the lens of contemporary childbirth. Through this analysis, I develop an inquiry into birth as a site of potential political awakening—an event of exposure within which particular manifestations of humility and autonomy might inform distinctly

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desubjugating experiences, but alternative understandings might enable distinctly empowering experiences. How the ideas of humility and autonomy get interpreted, how they take shape as cultivated dispositions, and how they get put into practice matters. Identity also matters. Thus while this chapter talks about “dominant trends” related to pregnancy and childbirth within American medicine, I also want to fully acknowledge that race, class, age, ability, gender identity, and other dimensions of social difference matter, particularly as they are embodied intersectionally. In the United States today one cannot talk about childbirth without citing the statistic from the Centers for Disease Control and Prevention that black women die from causes related to pregnancy or childbirth at a rate that is 3.3 times higher than white women (Native American and Alaska Native women die at 2.5 times the rate of white women).8 Poverty matters, and education levels can also matter. But for black women in particular, race matters the most.9 Testifying to this fact, Serena Williams has spoken publicly, and loudly, about her harrowing experience with the birth of her daughter in September 2017, including blood clots, a pulmonary embolism, a C-section she had wanted to avoid, multiple subsequent surgeries stemming from the rupture of her C-section wound, and six weeks of postpartum bed rest. Wealthy, famous, incredibly fit, and closely attuned to her body, she nonetheless describes not having her pain taken seriously, feeling extreme anxiety about her care and her baby, and recognizing that without the privilege and access she had to protect her she probably would have died. In her own words, “[I am] able to afford this opportunity to speak up and to say ‘No, I need help now!’ and people will listen to [me],” but “It’s devastating because that’s me. If I wasn’t who I am, it could have been me—and that’s not fair.”10 As Williams makes abundantly clear, empowerment in the form of self-advocacy is not equally available to all. While I focus in this chapter on questions of agency, self-determination, and the awakening to a participatory consciousness that can lead one to demand inclusion in power and knowledge, I realize how elusive that dimension of the childbirth experience is for the many women who must focus on simply accessing quality care and surviving. Finally, I also want to acknowledge that not all people who give birth identify as women. While I tend to default to the use of female pronouns here, trans men are increasingly speaking up about the fact that male-identified people can and do get pregnant and give birth. Finding doctors who are

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medically and socially progressive enough to provide good treatment and support through this process can be extraordinarily challenging.11 My hope is that childbirth can be more than mere access and survival, for all people who undergo it. Thus at work in this chapter is a commitment to the spirit of participatory and agonistic democracy, whereby citizens assert control over their own lives by actively associating with and engaging in contestation with others. Sometimes this engagement takes place at the level of the polity. But often it occurs through what the political theorist Mark Button has called “those channels that fall below the formal apparatus of the state: cultural, social, educational, and civic groups of various kinds,”12 as well as intersubjectively through channels we might not even regard as sites of participation and contestation. Birth, though a narrow channel with crucial if temporary associations, should be recognized for the ways it can either facilitate or impede what I will posit as democratically productive experiences of autonomy and humility. For as numerous studies now make clear, women can come through the process of giving birth feeling more like a subject or more like an object, but rarely do they emerge from the experience neutral about its impact on their intimate relations, experiences of embodiment, trust in authority, and perceptions of self-efficacy.13 This chapter works from the premise that the way a society treats birth— like the way it treats sickness, disability, aging, death, grief, poverty, and other gender and life-plan inclusive experiences of dependency and vulnerability— exposes significant historical developments, cultural anxieties, epistemic frameworks, and value structures. The contemporary U.S.  context can be understood in terms of dominant practices and discourses that have developed under neoliberal capitalism, with its emphasis on market values of efficiency, risk management, privatization, and freedom as consumer agency and self-care, and not public goods of participation, meaning, and equality. As Nikolas Rose describes this phenomenon, In an age of biological prudence, where individuals, especially women, are obliged to take responsibility for their own medical futures and those of their families and children, these ethical principles are inevitably translated into microtechnologies for the management of communication and information that are inescapably normative and directional. These blur the boundaries of coercion and consent. They transform the subjectivities of those who are counseled, offering them new languages to describe their

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predicament, new criteria to calculate its possibilities and perils, and entangling the ethics of the different parties involved.14

In the cast of characters that make up a mainstream birth scene, we would likely center the birthing person and her doctor, and typically an intimate partner. We might add another family member (perhaps a sister or a mother), or maybe a doula (or labor support specialist, hired by the family for a fee). When we think about births we have seen (usually in movies), we will remember to include the labor and delivery nursing staff (who typically are on air much longer than the doctor, and given more lines and activity than the mother), as well as other specialists who tend to be included in these scenes relatively regularly, such as an anesthesiologist. Not typically included in the hospital scene are midwives, though some state laws and hospital policies allow greater integration of midwifery, though usually only of certified nurse-midwives (CNMs).15 These characters all operate according to, among others, the American Medical Association, American Nursing Association, and American College of Obstetricians and Gynecologists (ACOG) protocols and guidelines, and must carry some form of liability or malpractice insurance. Our scene would also include the hospital more broadly, and its policies (boards and trustees) and billing procedures (accounts payable administrators and insurance company liaisons, if you are lucky). If we expand out that far, we have already moved well beyond the “medical” system and its players to the “legal” and “policy” system and the “insurance” system, thus my use of the term “medical-legal-policy-insurance nexus” throughout this book. All of these systems have different epistemic and value frameworks, different benchmarks and metrics, different power relations, different knowledge hierarchies, and their own extended cast of characters and “common sense.” When they converge in birth, in the web of effects that I try to disentangle here, it becomes difficult to sustain the idea that the doctor–patient relationship through travels in “Hospital Land USA,” and the birthing subject’s body and desires—her “choices”—are the primary forces at work in determining how a particular birth unfolds.16 The hyper-medicalization and administration of birth must be situated within this broader context, particularly if we seek to retain or reclaim for birth meaningful concepts of choice, control, freedom, and empowerment. I use these concepts here—particularly “choice” and “control”—as a way to reflect on humility and autonomy, which I revisit in detail later in this chapter.

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But in order to use these concepts I first engage in more conceptual ground laying, precisely because what “choice” and “control” increasingly connote, as they are deployed in contemporary neoliberal discourse, is quite at odds with a participatory-democratic ethos. Building on Foucault’s late work on biopolitics and governmentality, scholars like Wendy Brown, Angela McRobbie, Chantal Mouffe, Jodi Dean, Barbara Cruikshank, and Jennifer Denbow have illustrated the extent to which terms like “freedom” and “empowerment” under neoliberalism have come to be figured through idioms such as “responsibilization,” man-asentrepreneur-of-himself, capacity building (for nations and subjects), efficient administration (of subjects and populations), and stakeholders rather than citizens.17 Severed from considerations of how power really works, freedom and empowerment can function as modes of governmentality, or discipline. In Cruikshank’s words, we are “not excluded or controlled by power so much as constituted and put into action by power.”18 Within this rationality, choice is legitimate (indeed, intelligible) only when “aligned” with the needs of the organization. When that organization is a hospital, what Wendy Brown has called the “de-democratizing force” of neoliberal rationality overlaps in a complex way with lingering values of benevolent paternalism.19 Add to that the logic of insurance—both medical malpractice and for individuals—and minimizing risk and resistance comes to all but define responsible health citizenship.20 As I  discuss in greater detail later in the chapter, over 98% of women in the United States give birth in a hospital. In recent years, however, the rates of planned homebirth with a trained midwife have been steadily increasing.21 Debates about that trend, which can be quite heated, have centered on whether homebirth is safe and responsible, as well as a valid form of “systems-challenging praxis” for some,22 or whether it represents women willingly subjecting their baby to undue risk in order to aestheticize their birth experience and “put themselves first.”23 As I discuss in greater detail later in the chapter, this latter framing posits the mother in competition with the baby, and the desire for a “good birth” (meaning, typically, non-interventionist or more “natural”) as a threat to safely delivering a “good baby” (meaning, typically, a guarantee of neonatal health and wellbeing at any cost). On multiple levels, this debate and others about birth raise questions central to the study of power, resistance, and citizen-subjectivity. In what follows, I first address what I mean by the phrase “birth as a site of politics”; as an event of exposure through which dispositions relevant to democratic citizenship might emerge or be practiced. Next, I  lay the

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groundwork for thinking about how humility and autonomy are relevant for my consideration of birth as a site of politics. Having provided working conceptions of both the traditional and refigured understandings of humility and autonomy in Chapter 2, I here map the terrain of what the writer Jessica Mitford called “the American way of birth” through that lens.24 In particular, I consider how social values, relations of power and identity, and questions of choice and control circulate in childbirth, and ask how humility and autonomy, as embodied by birthing women as well as the practitioners who attend to them, help illuminate that context. In conclusion, I return to the question of birth as a site of potential political awakening and a context for cultivating dispositions important for public life and engaged citizenship.

Birth as a Site of Politics and Citizen-Subjectivity Birth matters. As one scholar put it, “the experience of childbirth is one of the most corporeal in the human condition.”25 It is one of those unique events of existence—mundane in its prevalence, profound when it directly implicates you or your loved ones—through which we cannot help but be produced literally and figuratively as humans and, I suggest, as citizens. I construe “citizenship” broadly here as a practice and a subjectivity oriented toward social and political agency, which embodies a desire for, or even a sense of entitlement to, individual and collective self-determination. My analysis is best understood as animated by Wendy Brown’s concerns regarding “the hollowing out of democratic political culture and the production of the undemocratic citizen. This is the citizen who loves and wants neither freedom nor equality, even of a liberal sort; the citizen who expects neither truth nor accountability in governance and state actions.”26 While my inquiry here is situated in dialogue with liberal theory, my aim is largely to illuminate the limits of traditional liberal philosophies of freedom. Thus I seek to uncouple the idiom of autonomy from individualism, and of citizenship from questions of the state and of rights, as well as from market metaphors of freely choosing consumercitizens.27 “Governance,” of course, is a concept that exceeds state action, and permeates all sorts of institutional and power relations, including contemporary healthcare.28 Indeed, one of the hallmarks of neoliberalism is the devolution of the governance of much of our existence to nonstate entities. With a concern for the politics of “life itself ” (or human health and reproduction broadly), Nikolas Rose has characterized such sites as “quasi-autonomous

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regulatory bodies” within which patients get solicited to “become active and responsible consumers of medical services and products.”29 In my terminology, these are sites where we get subjected as certain kinds of “good citizens” via norms of “good patients” as choice makers about health. Thus the concept of citizenship as a set of practices and dispositions we are inculcated to in nonstate and purportedly nonpolitical contexts is a central concern here, as well as in the next three chapters. This in itself is not a novel project—feminist political theorists have long sought to reclaim citizenship as a practice of radical democracy (not a legal or political status), and moreover a practice manifest in informal as well as formal politics.30 My distinct contribution here is to situate this project in the context of childbirth, and to figure birth as a site of informal, embodied politics that exposes paradigmatic dimensions of human interdependence and vulnerability, not something that offers a uniquely feminine or maternalist lesson. Like other formative and undelegable experiences of extreme corporeal or psychic vulnerability, such as dying, grieving, and facing mental or physical illness, birth brings into focus the limits of the will to agency and control. I argue for the study of birth as a site of politics here because I characterize such limits as constitutive dimensions of cohabitating in a diverse and pluralist political society, not as traumatic or exceptional “outliers” in an otherwise tidy sovereign human existence. Put simply: we don’t all birth, but birth has something to teach us all, as people who live in bodies that will confound us and as citizens who live with others and in worlds we do not necessarily choose or embrace and yet cannot simply will to control or opt out of. I am particularly interested in two qualities of “citizenship” here: (1) empowerment and freedom enabled by relationally supported self-knowledge and self-definition and a spirit of critique and resistance (the “autonomy” dimension of my analysis) and (2) our interdependence with and vulnerability to others, to history, and to our own human limitations (the “humility” dimension of my analysis). Though each birth is experienced differently, I argue here that birth should nonetheless be conceived politically and studied by scholars of politics who care about the relationship between gender, subjectivity, and political agency, just as they have studied the politically mobilizing or desubjugating effects of rape, abortion, motherhood, and breast cancer. Contemporary childbirth practices implicate a range of more traditionally recognizable political questions, for example issues of just resource distribution (who gets what, when, and how), the effect of structural inequality on how one is recognized and “treated,” questions of legality and liability, ethical

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accountability to others, and individual and collective risk analysis. And films like Abby Epstein and Ricki Lake’s The Business of Being Born (2008), as well as many recent popular press books on the politics and economics of birth, point toward a growing reform movement targeting the rising Csection rate as an appropriate subject of politicization and public address, and not merely individual negotiations or market solutions.31 However, I am focused here more on birth as a site of contestation affecting how the birthing subject is figured and treated, how that subject is solicited to participate in her own care (or not), and how values and preferences forged prior to but also in the event of birth matter for one’s subjectivity and sense of identity and efficacy after the fact. To raise this question is to take embodiment seriously and to recognize that extreme corporeal vulnerability can mark us in ways we may fail to fully appreciate at the time. As affect theorists have argued, “action is not an all or nothing business, but involves a process of capacitation and a preparedness in the body.”32 Embodiment matters. Of course, to a certain extent the questions raised here have empirical dimensions—exactly how do experiences in birth affect citizen-subjectivity? Or, put differently, under what conditions do birth experiences enhance or diminish one’s sense of oneself as an agent? Definitive answers to these questions are beyond the scope of this chapter, though I  provide some insights drawing on empirical work conducted by medical anthropologists, sociologists, and public health scholars. My primary aim, however, is to make the case that dominant birth culture in the United States raises ethical and political questions—questions about power and knowledge within institutions defined by rationalities, norms, and objectives. These questions are worth studying through the lens of critical democratic citizen-subjectivity, and should be understood as relevant to political scientists, not outside of or corrupted by political analysis.

The American Way of Birth In the summer of 1997, endurance athletes Sian Welch and Wendy Ingraham competed in the Ironman World Championship triathlon in Hawaii, and fought to the finish in what has come to be called “The Crawl”: a harrowing scramble across the finish line on hands and knees. Both women had so utterly drained their resources that their bodies were in a state of rebellion, unwilling or able to run anymore, with muscle spasms sending their limbs in

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all directions as they crawled to fourth and fifth place. One can view a video of this event on youtube.com, and it is a dramatic and moving display. As I experienced watching it, both on television in 1997 and twenty years later when I happened upon the video, these final minutes of a ten-hour race also seemed somewhat humiliating for these athletes who had so lost control of their bodies. Responses to the video posted online, however, are overwhelmingly positive, evidenced by comments such as, “Pain is transitory, The glory is eternal. Full respect!” and “I am in awe of the strength and courage these two women demonstrate and can only question if I had half their internal drive & commitment to reach a goal as they so powerfully demonstrate, naked for the world to see. I can only think of their integrity and conviction, and be humbled by it!” One commenter notes, however, that it “looks like they are running while trying to give birth.”33 This is not a compliment, obviously. Over the past four decades, women’s rates of participation in extreme and endurance sports have consistently risen, and their success in grueling events like the Ironman have garnered increasing attention, respect, and praise. Over the same period of time, C-section rates in the United States went from approximately 5% in 1970 to a peak of 33% in 2009.34 I am struck by this parallel. To be clear: I am not suggesting that childbirth is an extreme sport. Some (usually white, educated, well-off) advocates of non-interventionist birth do adopt the rhetoric of self-actualization through the physical and psychological training for the “marathon” of unmedicated labor and delivery. But the differences between voluntary leisure activities like endurance sports and the process of giving birth are plain.35 I also do not intend to imply that cesarean birth is equivalent to dropping out of a competition. There are a number of medical and personal reasons to deliver by C-section.36 But there are also what I take to be a range of cultural, sociological, economic, and political factors behind what has been called a “cesarean epidemic” in the United States. If popular media depictions are any indicator of how we regard childbirth culturally, it is a terrifying, hysterical, rushed, gross, and humiliating event that typically involves a frantic car ride, a lot of bright lights and metal apparatuses and machines that go “bing,” threats of a lifelong sexual strike by the beleaguered mother, and a benevolent medical authority who enters late in the game to take charge of the situation, usually by administering a variety of high-tech interventions to “help move things along.” The “machine that

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goes bing” is a reference to a famous Monty Python skit in their 1983 movie, “The Meaning of Life.” In a disturbingly funny and apt caricature of the stereotypical modern birth, two male doctors enter a sterile delivery room to heroic music, amidst an array of large and shiny technological apparatuses, and pause to try to figure out what they are missing before they can get on with the procedure. What is missing is the patient, who is clearly prepped for surgery and on her back on a gurney that has been parked behind the shiny machinery and forgotten. Once located, she is moved to the operating table and told loudly, “Now don’t you worry! We’ll soon have you cured!”37 When the birthing woman looks up, scared but cooperative, and asks “What do I do?” the doctors answer, “Nothing, dear! You’re not qualified. Leave it to us.”38 At the same time that these images of birth have come to dominate, a markedly different set of cultural depictions offers a competing narrative about the radical power of the human body, of being stripped down to one’s elements and yet pushing through that exposure and surrender with strength and dignity and a sense of ability, respect, and efficacy. Is it not a fascination with experiences of mastering corporeality by force of will (and tolerating risk and pain) that at least partly explains the widespread cultural consumption of extreme sports, as well as “reality” television shows like “Survivor,” “Man vs. Wild,” “Extreme Makeover,” “The Biggest Loser,” and “Naked and Afraid,” as well as bestselling books like Aron Ralston’s Between a Rock and a Hard Place, detailing his self-amputation and survival after 127 hours of being pinned by the arm in a remote slot canyon he had been exploring, alone, in Utah? As cultural tropes of self-sufficiency and the triumph of the human body and spirit persist in captivating our imaginations and capturing our entertainment dollars, depictions of birth and actual trends in American birthing have moved further away from these ideals. In contrast to the dispositions of critical strength I outlined in Chapter 2, and as I discuss more later in this chapter, humility in birth is figured as submission to corporeal dependence on medical authorities that will manage the risk and minimize the humiliation of the event; autonomy in birth is figured as cooperating freely with such management. Granted, and as noted at the outset, even “mainstream” or dominant American birth practices are not monolithic. Birth experiences frequently reflect race, class, geography, ability, sexuality, gender identity, and age distinctions, as well as forms of oppressive socialization and the expectations and practices that develop under these pressures.39 Addressing the role of

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class, for example, Ellen Lazarus argues that the desire for knowledge and control over birth is, in many regards, a privilege. She writes, “choices and control are more limited for poor women, who are overwhelmed with social and economic problems. They are usually unemployed; they have less education and more unplanned births; they start childbearing at earlier ages and are frequently unmarried. In addition, many poor women have no health insurance, leading to fewer choices for perinatal care.”40 Lazarus’s interviews suggest that while poor patients express a strong desire for access to quality healthcare, they do not cite “control” or triumphing independently over physical challenge as something they are focused on. The Listening to Mothers III survey, conducted by Childbirth Connection in 2011–2012, brings to light a range of other important differences in birth experiences.41 To offer just one example cited in the study, black and Hispanic mothers in the United States are far more likely than white mothers to report poor treatment by hospital staff and less choice in prenatal care provider.42 A 2013 study conducted in the United Kingdom found that among other differences, black African, Asian, and women of “Other” ethnicity were significantly more likely than white women to report being left by themselves for long periods during labor or shortly after birth in a way that worried them, and they were significantly less likely than white women to rate care in labor as good.43 Outcomes also vary. The black maternal mortality rate in the United States has risen alarmingly in the past decade, and studies suggest that race and ethnicity make a difference in how often and at what point in labor cesarean delivery is recommended to minimize anticipated complications (with data suggesting possible overuse of surgical delivery on black and Asian women).44 Finally, disability status can deeply impact a person’s experience with pregnancy and childbirth (and here I mean people who are disabled before, and after, becoming pregnant and birthing. For it bears mentioning that many health conditions experienced during pregnancy and related to childbirth are considered, at least for employment and insurance purposes, to be “temporary disabilities”). As one 2015 article notes, “Although pregnancy and childbirth have significant identity and health implications for all women, research to date has focused almost exclusively on nondisabled or able-bodied women.”45 Lesley Tarasoff ’s review of the literature indicates that women with physical disabilities, though typically of normal fertility and ability to carry a pregnancy to term and birth vaginally, encounter serious attitudinal, informational, physical, financial, and systemic barriers during the prenatal

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period. These barriers range from limited access to the built environment related to prenatal healthcare (everything from clinic room size to examination table configurations and the reliance on stirrups), as well as the outright denial of care. As one woman reported being told, “Get your tubes tied. You couldn’t take care of a child yourself.”46 While these differences in experience are crucially important, there are nonetheless clear national trends that largely hold across racial, ethnic, class, and other dimensions. Birth is increasingly medicalized, technocratic, and consumerized, particularly as pregnant bodies have become increasingly commodified and sexualized.47 And these changes accelerated notably in the first two decades of the twenty-first century. For example, the rate of artificial induction of labor increased from 10% in 1990 to 24% in 2010.48 The use of epidural anesthesia today is believed to range from around 60% to 90% by region and hospital, with an average rate of over 61% of births.49 If a woman does not actively decline or resist, she can expect an intravenous drip to be inserted on arrival at the hospital, continual electronic fetal monitoring throughout labor, and the use of a urinary catheter to allow her to empty her bladder without getting out of bed. Most women will encounter policies or practices that discourage or prohibit eating during labor, will be guided or directed to labor in bed and to push and deliver on their back, and will be put on a normative “labor clock,” which often results in augmentation of contractions via the drug Pitocin to manage the progression of labor according to statistically expected rates of dilation. If labor “stalls out” or deviates too much from normative time, it is categorized as “failure to progress,” which is the main justification for conducting a Csection. If a woman delivers by C-section, she is frequently refused a trial of labor for vaginal delivery of subsequent children, thus necessitating repeat C-sections. If she delivers vaginally, there is still a good chance that she will undergo an episiotomy (surgical incision of the perineum) to bring pushing to an end: rates of routine episiotomy were as high as 60% in the United States in the 1980s, and remain at around 30% to 35% today. As noted earlier, the rate of birth by C-section in the United States increased from 5% in 1970 to 33% in 2009, and the fastest rate of increase was a 53% rise from 1996 to 2007.50 Though C-section rates in U.S. hospitals vary considerably, from around 15% to 65%, the World Health Organization has suggested that 10% to 15% is an “optimal” rate, and that anything above that is concerning.51 Obstetricians in the United States and England, among other countries, have pushed back against this standard, arguing that “arbitrary

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percentages” should matter less than ensuring that every woman who needs a C-section can have one. While linking practices and policies to need and healthy outcomes seems intuitively obvious, what it means to “need” to deliver by cesarean then becomes an important question.52 A number of factors might explain why the C-section rate has risen dramatically in the United States.53 Yet while there are reasons one can point to for this increase, between 1996 and 2008 rates rose for mothers regardless of age, race, and ethnicity, and for infants of all gestational ages and in all states. The C-section is now the most frequently performed major surgery in American hospitals.54 Consequently, it has been normalized, and in the process sanitized of connotations of pain, cutting, and risk. While popular media attention has increasingly focused on the rise of non–need-based or “elective” C-sections, women who choose this procedure in the United States are still relatively rare (particularly compared to the media coverage the issue receives, thanks to the celebrity “too posh to push” phenomenon). But at doctors’ urging, ACOG recently “deemed it ethical for doctors to deliver a baby by C-section upon the request of the mother even if she faces no apparent risks from labor and vaginal delivery.”55 Thus “patient choice” and control over timing and outcome are increasingly cited by doctors as a reason for the rate increase. While the debate over the ethics of elective C-sections brings issues of choice and control in birth into unique focus, these are not new aspirations for birth. The “first wave” of birth reform activism in the early twentieth century focused on access to pain medication, or the “twilight sleep” that doctors often denied women in doubt of its safety. The “second wave” of birth reform in the 1960s and 1970s focused on opposing hyper-medicalized and anesthetized birth.56 Whether it was the demand for drugs or for support not to use drugs, however, choice and control were the operative aims of these health activism movements. Within hospital settings, the last decades have seen the rise of the “birth plan,” a concise statement of preferences a woman provides to her doctor and the nursing staff in an effort to have her choices known and respected in the (likely) event she loses the wherewithal to express and defend them during labor. The inclusion of doulas (trained labor support specialists) in hospital birth is another increasingly used measure to control one’s birth environment and experience. As noted in the introduction, recent studies show a marked increase in women opting for planned homebirths under the care of a trained midwife, with the number rising 20% between 2004 and 2008,57 and continuing to rise through 2012 (but note: this

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over 20% increase still amounts to less than 2% of births in the United States). While hard to quantify because generally unreported, rates of planned unassisted homebirths, or “freebirths,” are believed to have increased steadily in the last decade as well. These trends are also explained in terms of choice and control in birth.58

Dimensions of Choice and Control So what is the precise relationship between choice and control, and do debates about choice and control get to the heart of the question of autonomy? In this section I explore this question by distinguishing between the types of control one might assert in birth, and considering how perceptions of control impact the experiences of birthing subjects. As a number of feminist theorists have suggested, the rhetoric of choice articulated in the context of abortion rights suggests an essential connection between choice and control: if legal choice is protected, then women will have control over their bodies. Yet this rhetoric also betrays what Kelly Oliver has called “an existential anxiety about the very notion of choice,” within which “the language of choice becomes the fantasy of planning, controlling, and eliminating chance from reproduction.”59 Discourses attached to certain birth practices I have noted tend similarly to figure choice as a reliable path to control. And importantly, satisfaction with one’s birth experience is directly related to feeling in control.60 But control is not a straightforward, monolithic, or static concept. A number of recent studies have examined how women’s experiences of control in birth fluctuate during labor and delivery, and others have sought to distinguish internal control from external control and to understand the relationship between the two for an overall perception of control.61 External control involves a woman’s feelings of control over what her midwife or the nursing or obstetric staff does to her. This form of control hinges on factors like the quality of communication between the woman and her caregivers:  is communication thorough, open, and respectful, and does it convey to her that she is an active and equal subject who is involved in as much decision making as possible? Or is communication limited, cryptic, and unidirectional, and convey that she is a passive object being managed and treated by experts who know what is best for her? Internal control involves a woman’s perception of control over what she does and feels, and hinges on factors like control of her breathing, the ability to manage her own

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pain, and the ability to control how she interacts with others. Internal control has been characterized broadly in terms of “keeping it together,” or at least directing how one “loses it.”62 Identifying these distinct facets of control is an important step. But critically analyzing their operation is important as well. For example, as sociologist Karen Martin notes, the feminist and sociological literature on birth has traditionally ignored internal control, by focusing on how “women and their bodies are controlled and disempowered by social institutions during childbirth.”63 In line with the relational autonomy literature’s concern with oppressive socialization, Martin dissects the extent to which internal control itself may be problematically gendered, involving disciplinary power over the self that reflects deeply internalized norms about how women ought to behave. She writes that many women “worry about being and often are nice, polite, kind, and selfless in their interactions during labor and childbirth.”64 For example, one mother recalled for me how, during childbirth, she felt sorry for “the poor medical student who had to hold one of my legs while I was pushing,” and attempted to put him at ease by asking between contractions what he was doing that weekend and where he was from. In Martin’s account, internalized technologies of gender complicate the ideal of internal control, because they lead many women not to ask for what they want, and to feel like failures when they cannot behave like proper ladies, so to say.65 The women in Martin’s study (who, it bears mentioning, were almost all white, heterosexual, and middle-class) described themselves in retrospect as crabby, inflexible, whiny, short-tempered, and out of control. Rather than characterizing their behavior as understandable or importantly expressive of needs and desires in the midst of childbirth, they felt apologetic and frustrated with their lapses. So-called feminine lapses in birth and beyond (remember when Pat Schroeder cried, when announcing her withdrawal from the 1988 presidential election?) have long been deployed in debates about rational capacity, gendered citizenship, and participatory self-determination. How external control operates is subject to critical scrutiny as well. External control is an ideal that hospitals have attempted to institutionalize through “informed consent.” In “Choice and Control in Feminist Bioethics,” Susan Dodds examines how practices of informed consent represent an improvement over traditional “beneficent paternalism.”66 In that model of treatment, doctors do what they think is best for the patient, and the patient obligingly receives the care doled out. Under what Dodds characterizes as more of a modern consumer model, the physician is figured as an expert-advisor

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providing information to a consumer-patient who makes decisions without paternalistic intrusion.67 Respect for autonomy in this latter model is somewhat thinly reduced to non-interference. There are numerous problems with this on Dodds’s account:  the consumer-patient model assumes a fully autonomous and rational agent; it adopts a simplistic understanding of “knowledge” and “choice”; it makes the primary ethical consideration for physicians simply obtaining consent; and it fails to consider the crucial importance of autonomy-influencing practices and policies within medical institutions, which condition what a “rational” choice looks like. Wendy Brown captures dimensions of the problem of informed consent that I touch on here when she discusses the compatibility, long recognized in political theory, between individual choice and political domination, especially when subjects are “absorbed in a province of choice and need-satisfaction that they mistake for freedom.”68 While protecting the right to informed consent is an improvement over uninterrogated practices of beneficent paternalism, it is not hard to imagine how the context of birthing—and numerous other medical contexts within which any person might experience acute vulnerability, the weight of intense decision making, and understandable information overload and confusion—frustrates this attempt to institutionalize external control. For example, with regard specifically to birthing, one question that arises is what it means to be informed. There is evidence that the majority of women who opt for epidural anesthesia or plan for a C-section (either electively or after a previous one) are inadequately apprised of the risks attendant to those procedures. To offer another example, while continuous fetal monitoring during labor provides ongoing information about the baby’s heart rate, it is not clear that this information is always accurate or useful for the woman hooked up to the monitor (in fact, often the constant feedback becomes a distraction or a source of worry). Thus even where a patient is provided with more or even full information, grasping its meaning and implications can be extremely difficult. And often doctors committed to a principle of noninterference are unwilling to provide decision-making assistance that truly helps one grasp how the choice will impact her. Answering the question “What should I do?” requires personalized understanding that goes beyond technical knowledge. As I recounted in the preface to this book, part of what moved me to want to write about birth was my experience being pregnant for the first time at the age of thirty-five, and trying to get my perinatologist to help me decide whether to get an amniocentesis to test for possible

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chromosomal abnormalities. He was very supportive of whatever choice I made, but I had no idea how to make this choice. I never felt better informed and less comfortable consenting than in that moment of utter noninterference in the service of my autonomy. The other question that arises is what it means to consent. Does a woman whose birth plan expresses a preference against episiotomy choose one if a doctor offers it when she is compromised after hours of pushing? Does having her sign an informed consent release between contractions accomplish anything other than protecting the doctor from a malpractice suit? Does a woman who is told that her placenta has a chance of failing if she goes past her due date, and that she should schedule an induction of labor even if the fetus shows no signs of distress, consent from a position of informedness, or simply uncertainty and fear?69 Does a woman who is told by her doctor, “Just say the word, and I’ll get this baby out of you” genuinely consent to a C-section? While Thomas Hobbes may have believed that consent was legitimate even if motivated primarily by fear, for contemporary liberal democratic citizens this is usually not a compelling account of voluntary, autonomous choice.70 Certain substantive conditions often strike us as necessary for an action or intention to register as genuinely self-determined. As I address later in this chapter, recent studies of what differentiates a satisfactory or empowering birth experience from an unsatisfactory, demoralizing, or even psychologically traumatizing one suggest that a more complex notion of autonomy is at work in the “labor union” that defines childbirth.

“Get Me Out of Here!”: Toward Autonomy and Humility in Childbirth The dominant values surrounding birth are increasingly efficiency, convenience, and extreme risk avoidance—outcomes over process. Consider a 2008 ACOG report criticizing home birth, which stated, “The main goal should be a healthy and safe outcome for both mother and baby. Choosing to deliver a baby at home, however, is to place the process of giving birth over the goal of having a healthy baby.”71 As one anesthesiologist and recent mother interviewed for another study put it, I don’t really care about the birth experience like a lot of patients do—into soft lights, soft music garbage. For me it was about getting a good baby. I’ve

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seen too many times where patients are so concerned about it being a lovely experience for them that this has overridden the desires for having a good baby and they put themselves and their birth experience in front of having a “good” baby come out and having the best care for that baby.72

A good birth and a good baby are figured here as in tension. And this statement is not anomalous, but rather representative of a prevailing rationality. A woman’s desire to self-determine her own priorities for a good birth, for example by resisting medical interventions or opting out of the hospital altogether, is often framed as self-centered and irresponsible, not as a form of bodily trust, health citizenship, and educated agency. While ACOG may formally express support for patient autonomy, a woman who wants to make choices about her care that exceed the narrow set of options sanctioned as normal and reasonable is figured as lacking humility, and is marginalized, disciplined, and even stigmatized as a bad mother. Here, the context for autonomous choice is clearly burdened. Burdened autonomy involves constraints that can be quite subtle, where no external factors force one to agree to certain choices, and yet one seemingly consents to be so governed.73 For example, dominant obstetric practices today result in 33% of women having a birth attendant they barely know.74 And participation in childbirth education classes has decreased decade by decade since the 1970s. Given this, more and more women now go into labor unprepared and anxious, as reflected in birth narratives that describe shock, terror, isolation, and, importantly, as a simple Google search will show, the words “I would have agreed to anything at that point.” Under such conditions autonomy is clearly burdened, and birthing subjects are primed to defer to authorities with whom they have little to no preexisting relationship. Deference to authority is not, in and of itself, a problem. Building on the analysis of choice and control developed in the previous section, one recent study showed that a significant form of control cited by many women after giving birth involved “relinquishing control” to their obstetrician or midwife.75 As the title to this section—“get me out of here”—suggests, giving birth often involves a profound desire to get out of the moment. The baby, of course, is working to get out; and caricatures of obstetricians at birth tell us that they want to get out, in order to make tee time, tea time, or whatever. But birthing women also frequently recount hitting a limit in labor when they decide they have had enough and resolve to call it a day and get out of there. This desire to get out—to have one’s “Enough!” or “No more!” or

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“Because I said so!” be determinative, is deeply characteristic of the quest for self-determination under conditions of embodiment and interdependence defined largely by unfreedom; again, an apt way to characterize political cohabitation in complex, pluralist democratic life more broadly! If autonomy is figured as sovereign agency secured through non-interference—the traditional liberal, negative freedom model—then both the inability to will a situation under control and the desire to cede control to another person comes to look like failure. But autonomy need not be conceived that way. At least in childbirth, relinquishing control itself can be experienced as a kind of humility-informed-relational-autonomy—as something one reflectively and willingly delegates to a trusted partner, and not something grudgingly, unwittingly, or fearfully surrendered to an expert with asymmetric power and knowledge. When experienced as a genuine choice, relinquishing control has been shown to have a positive relation to overall satisfaction with one’s birth experience. In contrast to the “labor union” model gestured toward here, within the dominant cognitive and value framework underlying contemporary U.S. hospital birth, a woman’s demand for a more expansive autonomy often gets cast as being “difficult” and the humility solicited from her takes the form of deference to experts and cooperation with the system’s logic.76 As one jaded obstetrician lamented, “Autonomy stops at the door of the labor room. Women are implicitly allowed, or encouraged, to make only those choices that increase the power of the physician . . . Is it not the opposite of autonomy to support only those choices that increase the woman’s reliance upon the physician?”77 In this version of the conceptual nexus, humility as acquiescence reduces autonomy to picking from a predetermined and limited set of menu items. But again, these are not particularly appealing concepts, because they require birthing subjects to bracket off values of critical participation, empowerment, and supported self-determination. To have any chance of functioning as a source of strength and grounding substantive, relational autonomy, the humility of the corporeally vulnerable birthing woman must be met by the humility of the clinical practitioners attending to her. For the practitioner, as Melanie Tervalon and Jann MurrayGarcia outline in a seminal piece, humility requires that “individuals constantly engage in self-reflection and self-critique,” that they “bring into check the power imbalances that exist in the dynamics of physician-patient communication by using patient-focused interviewing and care,” and that they “develop and maintain mutually respectful and dynamic partnerships” with

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the communities and individuals they serve.78 Where “achieving” cultural competence can lead practitioners to a false sense of security in their knowledge of what is best for a patient, cultural humility involves a process of “realistic and ongoing self-appraisal” that cultivates flexibility and openness with regard to the experiences, needs, and desires of each individual patient.79 This dispositional flexibility points to an important shift in attitude, namely respecting the process of giving birth as well as the outcome, and taking seriously the centrality of the birthing woman as a person undergoing a significant life event, not simply a patient to be “cured,” a case number, a set of data points on a monitor, or even a “mother to be.” Here doctor humility conduces to a systems-challenging relationality. While “respect for persons” and their autonomy is the ethical foundation of informed consent, cultivating the kind of humility that Tervalon and Murray-Garcia advocate, which exemplifies the “new humility” I discussed in Chapter 2, is essential for giving formal, institutionalized respect a necessary substantive and relational quality. And this matters, for as the philosopher Onora O’Neill has shown, while measures to ensure informed consent have increased in recent decades, levels of trust in the medical establishment have decreased.80 Often, informed consent is experienced as a rote formality, and not a genuine attempt at ensuring equality and partnership. Many patients report feeling they have been told that they are informed, told that it is time to consent by signing, and told that they have now freely chosen whatever occurs. This trend is likely to be exacerbated as neoliberal rationality more deeply permeates healthcare contexts,81 for the performance of informed consent effectively conveys the message of responsibility mentioned at the outset: you made a choice, now you are responsible for bearing the consequences.82 Absent a cultivated humility on the part of the practitioner, O’Neill suggests, informed consent “illustrates a simulacrum of autonomy” that erodes trust and belies the connection between choice and control.83 This experience of faux autonomy and lack of trust in authority may incite anger that spurs a will to change through subsequent health activism like that of the birth reform movements noted earlier in the chapter. But absent supportive relations grounded in mutual humility and bolstering instead of burdening autonomy, the distinct conditions of exposure and vulnerability in birth may result not in a sense of empowerment or entitlement to self-determination, but rather objectification and impotence. Psychologists have studied these possible trajectories from the perspective of self-efficacy broadly construed.

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But here I urge consideration of how birth experiences impact the particular kind of collective self-determination associated with citizen-subjectivity, and the will to make the personal political and then transform it. In the context of birthing, the midwifery model of care more consistently practices patient-centered partnership through the cultivation of highly personalized relationships.84 This is due partly to the values and training at the center of midwifery, which eschews the managerial and market logic of efficiency. Midwives also typically practice outside the assumptions, constraints, and resources (including inductions, epidurals, and surgery) of the mainstream medical establishment. Free from billing practices developed under insurance and profit imperatives, for example, midwives generally schedule forty minutes per patient visit because preventive care and trusting relationships are regarded as the most reliable route to non-interventionist birth. In contrast, despite figuring birth as inherently risky, obstetricians spend on average just ten minutes per patient at most prenatal visits.85 This informs the stereotype I mentioned earlier, namely that obstetricians are always impatient to take off from routine appointments or from labors that threaten to drag on. One recent study, however, found that the high rate of obstetrician burnout was directly attributed to the gap between how much time they believe they need to competently tend to a patient, and the amount of time they are allotted based on scheduling pressures, billable hours, and caseloads. Significantly, doctors expressed their frustration in terms of lacking autonomy to decide how to care for patients.86 When I began this project, I speculated that the “C-section epidemic” at least partly reflected a well-intentioned, if misguided, benevolent expediency on the part of doctors, executed within a context where pharmaceutical and surgical interventions are a (highly compensated) sign of skill and high-quality care. I speculated, further, that implicitly or explicitly at work here might be a desire to save women from the unnecessary humiliation of suffering through childbirth, and the messy lack of control it entails. This paternalistic benevolence, particularly when mixed with neoliberal efficiency, risk management, and lawsuit avoidance, ultimately struck me as lacking humility (and reinforcing the link between humility and humiliation, as well as technocratic agency and control). Birth is typically a low-risk physiological process that does not generally require extensive management and manipulation by a medical authority, not to mention a valuable human process with its own logic and clock. Tervalon and Murray-Garcia’s insights, however, are illuminating here:  it may not be doctor-as-god hubris that has driven the

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birth trends we are witnessing today so much as an unquestioned security in a body of knowledge about who is the proper arbiter of “health” and what is normal, possible, and desirable for birth, namely the avoidance of risk and pain and the guarantee of a good outcome in the form of a “good baby.”87 The picture that emerges here is thus a complex one: the dynamics of humility and autonomy mix and morph across the multiple relations of power and knowledge that converge during birth; an event that practitioners attend to daily but that most women go through, if they do at all, but few times in their lives. To the extent that a pregnant person can neither delegate giving birth to another, nor intentionally command the process entirely on her own, birth exposes and disposes us to others, to uncertainty, and to the precariousness of the body and the will. What we can learn from examining extreme events of exposure like birth is how the quest for control as an important animating spirit must be partnered with the disposition of humility outlined in this and the previous chapter. This is not default self-denial and submission to authority or regimes of expertise, but realistic self-assessment, a commitment to learning and reflecting, and an appreciation of the whims of fate that inevitably affect human agency and put us at the disposal of others—others with whom we must engage in contestation over values and goals, and also on whom we may depend in our inevitable relationality. This “new humility” is important, I argue, because it allows us to aim at self-determination while also locating the limits of our autonomy. Further, this more generous form of humility encourages us not to berate ourselves for those limits but instead to enlist, individually and collectively, the care and supportive relations needed to survive, and to thrive.

Conclusion: Birthing Citizens? Again: over 98% of women in the United States give birth in a hospital, almost all with a physician. For some, this is because of insurance exclusion of out of hospital birth, justified by ACOG recommendations. For others, the choice of a birth center or their home is undesirable for practical reasons (distance from a medical clinic, other kids or cohabitants at home) or for social reasons (generational shifts from poverty and exclusion that necessitated home birth, to progress that allowed for hospital birth). For others with high-risk pregnancies, the hospital generally is the best place to birth. But for most women, tacit though this choice may be (meaning they do not think

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of it as a choice), birthing in a hospital with a physician may reflect their sharing, at least to an extent, mainstream medicine’s belief that birth is an inherently dangerous medical event, and that taking all precautions to minimize risk and get a “good baby” is what good women and good doctors do. There is nothing natural or inevitable, however, about how this grid of intelligibility of women’s birth choices came about. Furthermore, there is a kind of Foucauldian docile subject implicitly assumed and in turn disciplinarily compelled within this logic, often through the discourse of choice and control, or autonomy. Birth ultimately resists the desire for self-mastery. It is one site at which the messiness of embodiment and the precariousness of subjectivity are conspicuously on display. Yet structured docility or tightly delimited participation ignore the fact that there are nonetheless clear dimensions of choice and control possible in birth experiences. When a woman opts for a homebirth, for example, she establishes a certain amount of control over her environment and the protocols she is subject to. Of course, in choosing homebirth one also forfeits the choice of some interventions and anesthesia—forms of control— unless she transfers to a hospital setting. As numerous books detail, a large part of preparing for homebirth is the psychological work of coming to terms with the complex nature of choice and control; with the idea that ultimately your body is in charge and your mind best get out of the way, be patient, and surrender to the process.88 This sentiment represents a complete contradiction of rational liberal subjectivity and an affront to modern political theory’s crusade against fate since Machiavelli described fortuna as a woman who must be beaten and bullied into submission.89 But supported and informed yielding (something like the “relinquishing autonomy” discussed earlier in this chapter) is not the same as subordinated docility. Conceptually distinguishing the two in birth might help clarify dispositions of critical citizenship; dispositions that balance between the will to glorious self-mastery and radical political transformation, on the one hand, and simply opting out of thorny or seemingly intractable public endeavors, on the other. Autonomy, particularly as it is informed by humility, is a disposition and practice that we may have the opportunity to engage in where we are perhaps least likely to look for it, if only we are attuned to seeing those opportunities and we value that undertaking. Unfortunately, as Mark Button has pointed out, and as so many dimensions of our contemporary political condition affirm, “the value of autonomy is often discerned . . . only by suffering its denial, absence, or delay.”90 For too many women, this is a palpable dimension of

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their birth experience. Thus birth can be a site of political awakening within which spaces of resistance to particular ways of knowing and being governed can be staked out. I began this chapter with the contention that birth matters, and not just for the individual or family or community it directly impacts, but as a social and political phenomenon that is saturated with questions of power, ethics, gender, discipline, and resistance. Birth is thus the proper territory for feminist and political theory. The process of preparing for and giving birth may provide an experience through which one undergoes a certain change in political subjectivity, or cultivates dispositions that are important not only for birthing. These are dispositions that are important for engaged democratic citizenship: self-knowledge, self-determination, intellectual courage and a spirit of critique, presumptive generosity toward the vulnerability and limitations of self and others, openness to uncertainty, and the will to persevere in our aspirations despite the inability to control everything on one’s own. I have broadly explored these traits in terms of autonomy and humility, from the perspective that a sense of choice and control over our lives probably matters deeply to us, and yet our quest for control is never guaranteed, is frequently frustrated, and is always potentially a site of subjection. Assumptions about the birthing subject have been forged in the context of imperatives within which the participatory desires, agency, or supported self-determination of the woman giving birth are not central concerns. Birth largely fails to register as a practice that might implicate democratic values and citizenship impulses. Concepts of humility and autonomy circulate in birth, but as I have discussed here, they are often impoverished concepts that ground and justify largely managerial dynamics and metrics of success. In a time saturated by logics of risk and efficiency, and outcomes over process, being alert to an alternative way of thinking about humility and autonomy may present us with a way of behaving according to a different, subversive, and potentially vitalizing, relational political subjectivity.

4 Arguments over Ends Hospice and How We Die From “Downton Abbey,” on the death of the visiting Turk, Kemal Pamuk: Granny: Last night he looked so well. Of course, it would happen to a foreigner. It’s typical! Mary: Don’t be ridiculous. Granny: I’m not being ridiculous. No Englishman would dream of dying in someone else’s house. Especially someone they didn’t even know. Mary: Oh Granny, even the English aren’t in control of everything. Granny: Well, I hope we’re in control of something, if only ourselves. Mary: But we’re not, don’t you see that? We’re not in control of anything at all! These days, many hospitalized patients die only when a doctor has decided that the right time has come. —Sherwin B. Nuland, How We Die1

In his essay “Letting Go,” the surgeon and author of Being Mortal, Atul Gawande, takes up the question of how we deal with death in America. “Our medical system,” he writes, “is excellent at trying to stave off death with $12,000-a-month chemotherapy, $4,000-a-day intensive care, $7,000an-hour surgery. But, ultimately, death comes, and few are good at knowing when to stop.”2 Though Gawande begins with the question of cost, and wrote the essay at least partly as a response to the national debate about healthcare reform and the battle between taxpayers and insurance companies regarding who foots this increasingly high bill, he argues that the focus on price is misplaced. “The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.”3

The Virtues of Vulnerability. Sara Rushing, Oxford University Press (2021). © Oxford University Press. DOI: 10.1093/oso/9780197516645.001.0001.

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The picture that emerges over the course of the essay is a complex one, framed largely around a number of patients that Gawande and colleagues helped treat. As Gawande notes, biomedical and technological developments have made it increasingly difficult to know when a person is actually “dying.”4 For most terminally ill patients, what the sociologist Karla Erickson calls the “threshold time” between living and dying lasts longer now than ever before in history.5 The contemporary medical-legal-policyinsurance nexus is one in which “choice and control” over how we die is touted as a fundamental value, and yet choice and control are, in fact, often thoroughly constrained. To offer one example, in order to enter hospice care patients generally must agree to forgo standard curative medical treatments, and have a doctor certify that they have a life expectancy of no more than six months. For many patients and their families, this is an incredibly difficult choice to make. And for many doctors, as Gawande testifies, the “seemingly unstoppable momentum of medical treatment” is simply the accepted norm.6 “Rarely,” he writes, “is there nothing more that doctors can do.”7 While there are cynical interpretations of the tendency toward “cure”—for example financial gain in a for-profit hospital world, research opportunities, technology fetishism, or lawsuit avoidance—Gawande focuses on the human side: doctors are often ill equipped to give patients information that will dash their hopes, particularly at moments when they are so physically and emotionally vulnerable. Time to sit with patients is limited, and medical training includes very little about how to counsel patients about end-of-life decisions. Many doctors see such conversations as tantamount to “giving up.”8 And as Gawande conveys, many are just personally uncomfortable with the topic of death. Not infrequently, then, physicians go so far as to discuss experimental therapies they know are likely to have virtually no benefits (and potentially awful side effects) because the patient indicates a desire to keep fighting, and interprets “patient autonomy” as the right to request any and all treatments available, whether medically appropriate or not.9 Finally, many doctors themselves harbor deep hopes that each patient will be the one to beat the odds. One study Gawande cites showed that the more intimate a doctor is with a patient, the more likely she is to significantly overestimate how long that patient might live.10 As Nikolas Rose describes it in The Politics of Life Itself, increasingly “fears and anxieties about morbidity and mortality are being reframed within an ethos of hope, anticipation, and expectation.”11 While doctors may

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make excellent allies in the fight for one’s life, they are not necessarily good partners on the journey toward death. What is there to say about the desire to fight for one’s life? In a way, it is simply obvious. Despite a counter-discourse advocating greater death acceptance, the image of the fight and the myriad war/battle/struggle metaphors it gives rise to continues to ground much of our public conversation on life-threatening illness. As Stephen Jay Gould wrote in 1985, after receiving his own diagnosis of a highly fatal cancer (which he survived), “It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. . . . I prefer the more martial view that death is the ultimate enemy.”12 While disability is not the same as illness or disease, disability studies scholars and activists importantly remind us that even when healthy they are often regarded as living in death’s shadow. To talk about death and dying, we must acknowledge that the neoliberal lifemaximizing imperative is not equitably distributed. Those whose lives have never been deemed worth living (and saving), and thus for whom the battle against death is both physical and existential, need to be part of the conversation. As the disability rights lawyer Harriet McBryde Johnson put it, “The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist.”13 Under such conditions, “death with dignity” may loom as a threat against the “burdensome,” not an aspiration. And yet the cases Gawande recounts of terminally ill patients who fought to the bitter end—that is, a mechanized, tubed, surgical, defibrillated, unconscious, or conscious and fearful, end in the intensive care unit (ICU)—are heartbreaking. If there is an abiding message in “Letting Go,” it is that you do not want to die in the ICU if you have a choice. Not just for the dying, but also for the loved ones attending to their death, this matters: among intimate caregivers tending to terminally ill cancer patients whose final days were so characterized, rates of depression six months later were three times higher. How we die matters, and the struggle not to die can easily supplant the struggle over how we die. In this chapter I take up the question of how we die in the contemporary United States, figuring death and dying as a site of potential contestation and thus politicization. I use Gawande’s essay as a point of departure, examining how we die through concepts explored in the previous chapter, particularly choice and control, and humility and autonomy. I also add a

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dimension merely touched on in my consideration of childbirth: preparing versus planning. The context for my analysis in this chapter is primarily terminally ill patients who are, at least theoretically, in a position to make decisions about, or “plan for,” how they will die. Such planning may include creating an advance directive or do-not-resuscitate order, articulating intentions for whether or when to stop treatment and move to palliative or hospice care, and to a much lesser extent, because legal only in a few states, pursuing physician-assisted dying (PAD, often called “physician-assisted suicide” or articulated through idioms of the “right to die” or “death with dignity”).14 Planning of this sort almost always takes shape within, or in the shadow of, “the medical system,” which again is really overlapping systems of law, policy, ethics, religion, economics, scientific knowledge and research, and clinical practice and protocols. Finally, this planning frequently happens within the doctor–patient relationship, which entails asymmetric power and knowledge, and which typically develops under serious time constraints that lack dedicated space for the emotional preparation for life’s end. How does dying get managed and how do decisions about death get produced within this matrix, particularly as it embodies the dominant logic pervading contemporary healthcare? This logic is defined by increasing medicalization and manifests in clinical relationships that shape up in terms of a lingering benevolent paternalism that overlaps with a neoliberal emphasis on efficiency, maximization, personal responsibility, and risk management.15 Like the previous chapter, this one revolves around the three distinct but interrelated “problems” I laid out in the introduction. The “practical” problem here is pretty straightforward: how we die in the United States does not seem to be going well. Over the past fifty years a vast death and dying literature has emerged, in the wake of Elisabeth Kübler-Ross and Philippe Aries’s foundational books on the topic.16 This literature conveys a genuine sense of urgency about the death culture that Gawande introduced earlier in the chapter. And yet over the period of time that this clarion call has grown louder and louder, end-of-life care in the United States has gotten more expensive and less satisfactory. How people say they want to die is often seriously out of sync with how they actually die. The professionalization and increasing medicalization of death—what one scholar has called “the responsibilization of medicine for the governance of death”17—has attempted to discipline and sanitize a largely unpredictable process.18 Like with the chapter on childbirth, I embarked on my exploration of death with a sense that healthcare practitioners were a

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primary cause of this practical problem: that they lacked humility in the face of these major life experiences, which they sought to control and manage as pharmaceutical and physiological problem sets—that while they gave lip service to patient autonomy, it was autonomy problematically conceived and frequently abandoned as a guiding value.19 Though the reality is quite a bit more complicated, obviously, this hunch grounds the second, “conceptual” problem. Again: the dominant concepts of humility and autonomy at work in contemporary American culture, including death culture, are inadequate. As I laid out in Chapter 2, our traditional conceptions of humility and autonomy, inherited from Christian and liberal thought, respectively, function as norms or ideals that shape our practices—how we think about and act on what we expect of “good subjects” (sometimes passive, sometimes docile, sometimes active). In this chapter I use humility and autonomy as a lens through which to critique contemporary death practices and policies, and use the context of death and dying as a lens through which to further examine the revitalized concepts of humility and autonomy that I develop throughout this book. In contrast to the traditional conceptions, which stand in opposition to each other (humility as deference to authority, and autonomy as self-governance), the versions I defend here are dependent on each other. Taken together, in the form of what I call “humility-informed-relational-autonomy,” we find an ethical disposition that is important not only for the healthcare contexts that I explore, but for our subjectivity as citizens within democratic engagement and contestation more conventionally understood. Finally, then, this chapter addresses the “political” problem: how might our subjectivity as citizens—people who aspire to freedom and selfdetermination within our inevitably stymieing historical finitude, human fragility, and collective interdependencies—be diminished, enhanced, or otherwise impacted as we go through experiences of dying (our own deaths, a loved one’s death, or the death of those we provide care to)? In what ways might death be recognized as a site of contestation, which involves ethical engagement and potentially an awakening to broader forces and dynamics that are best described as “political”? In other words:  how might our exposure to experiences of bodily and psychic vulnerability in contexts of asymmetric power and knowledge on the path from diagnosis to death be potentially politicizing for us? Versions of the underlying question here run through much of contemporary political theory—what does the desire for self-definition and self-determination under conditions of unfreedom

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look like?20 In our contemporary political moment (of Black Lives Matter, of the persistent refugee crises, of increasingly frequent mass shootings, of the COVID-19 pandemic, and so on) there is much attention to when, how, and by whom death gets politicized. Whose deaths matter? But the question I want to ask is how we may get politicized by death, or at least by mainstream institutional dying. How does death matter for us? When we give birth, when we face death, when we suffer life-altering illness or grieve our losses—all experiences that we simply cannot delegate or bargain with—our constitutive vulnerability and interdependence are brought into stark relief. As the epigraph from “Downton Abbey” humorously captures, we modern liberal subjects, in particular, take a certain sovereign agency as the norm, and the expectation. And as discussed in Chapter 1, within neoliberal rationality this expectation gets converted into a notion of personal responsibility for the management of and maximization (meaning extension and enhancement) of our lives. But the effect is the same: the incapacity to live up to expectations, for example by dying in another man’s house, is culturally cast as nothing short of humiliating and shameful.21 A failure of self-mastery. In a way this is nothing new. Across these chapters I  have noted what is perhaps obvious:  embodiment and vulnerability have always posed a problem for Western thought.22 But we all live in bodies, and die in them. Beyond reminding us about the facticity of fragility, though, I want to suggest that lived exposure under conditions of vulnerability and dependence is not an apolitical aberration of existence, but rather an acute example of what is always true about the human condition. The liberal subject, as Martha Fineman, Judith Butler, Joan Tronto, and others have shown, is a fiction. And not, I might add, a particularly useful one. This chapter thus asks: what practical, conceptual, and political lessons might we learn from exploring “how we die,” and what practical, conceptual, and political resources might we generate through a critical engagement with dominant contemporary American end-of-life practices? Perhaps these resources better equip us as mortals to navigate dying. I hope so! But before that, perhaps they inform life in the polis and thinking in political theory, by illuminating one site (admittedly, one extreme site) at which citizen-subjectivity might be forged in the crucible of bodily vulnerability. Where Montaigne (quoting Cicero channeling Plato) taught us that “to study philosophy is to learn how to die,” I want to suggest that to study how we die is to learn something about how to philosophize about politics.

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How We Die Now . . . And Why Long story short: roughly 90% of people say they want to die at home, peacefully and comfortably, surrounded by loved ones.23 While home as the location of death for the elderly and terminally ill has increased in the last decade, so has aggressive treatment in the ICU in the last month of life.24 In her 1992 article “Planning to Die,” the medical anthropologist Jeanne Guillemin argued that the ICU as a whole should be recognized as a distinct technology that hospitals actively market, and that economic imperatives (i.e., hospital profit margins) and a commitment to sustaining life at all costs should be recognized as the drivers of that phenomenon.25 The implication of increased dying in the ICU is significant. As noted at the outset of this chapter, if dying at home represents a quest for comfort and control, dying in the ICU represents the extreme opposite. In Guillemin’s words, “The impact of the intensive care unit on the American way of dying has been profound, for it is there that contemporary medicine routinely eliminates the primary actor, the patient, from the ritual of dying.”26 ICU or not, in the late twentieth and early twenty-first century most people in the United States died in an institution of some sort, be it a nursing home or the hospital (statistics for Medicare patients have been as high as 80%).27 From 2000 to 2010, 25% of hospital deaths were people eighty-five years of age or older.28 Reflecting these trends, in the United States roughly 33% of Medicare spending goes into the final year of life, and 33% of that amount goes to the last month of life.29 And studies suggest that these expenditures often have no meaningful impact on a dying person’s life.30 Dying may be deeply personal, but these trends are systemic.31 While hospice use has been on the rise, the typical stay in the United States is just over 19 days, and over 35% of the dying receive hospice care for less than a week.32 Among other key reasons, a 2010 New England Journal of Medicine article on hospice underutilization in the United States cites the deep-seated physician belief that hospice is only for the imminently dying, and the belief that by sending a patient into hospice care the physician has failed. On top of that, Medicare, which pays for 85% of hospice care, requires the end to curative treatment in order to enter hospice. Elderly and terminally ill patients frequently say they want low-interventionist deaths that do not involve last-ditch “extraordinary measures” driven by interfering doctors or family members who can’t let go. Despite this, as Gawande’s essay makes painfully clear, when confronted with concrete

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decisions about discontinuing curative care or the use of specific technologies at the end stage, people often find themselves confused (and in disagreement with each other). What constitutes “needless interference” with an inevitable process versus “humane intervention” on behalf of the dignity and comfort of the dying? And who decides? In the words of one account from the Annals of Internal Medicine, “whenever family cannot reach consensus, hospitals typically adopt the treatment plan perceived as the safest—maximally aggressive care.”33 Within the interventionist logic of hyper-medicalized dying, a “better safe than sorry” approach is extremely hard to forgo, for doctors, family members, and patients alike.34 From this perspective, choosing to move into hospice care can look like an act of resistance to dominant norms and knowledges, or an unmasking of certain power formations that we should recognize as “systems-challenging praxis.”35 As an effort to impose some sense of control over the dying process, the use of advance directives has increased notably in past decades.36 At first glance, advance directives seem like a forward-thinking, rational, and responsible move involving the ability to humbly and bravely confront one’s own mortality and articulate choices that will ease decision making for loved ones. In fact, though, the kind of planning that the creation of advance directives involves can be problematic. As Carmel Shalev has noted, conversations with physicians about advance directives are typically brief; one study showed they lasted on average just 5.6 minutes, and doctors talked for two thirds of that time.37 Henry Perkins has argued that while advance directives “symbolize medicine’s recent commitment to patient empowerment,” they actually create an illusion of control.38 That is, Perkins argues that advance directives promise more control than is really possible and substitute a planning mentality for true preparation. Thus both Shalev and Perkins, among numerous others, suggest that planning by way of advance directive should be used less to manage and control the inherently unpredictable details of dying, and more as a vehicle for spiritual, psychological, and emotional preparation in dialogue with others whom our dying implicates. Of course, as Perkins points out, the context created by our insurance-driven (and largely profit-driven) healthcare system is pivotal, for a primary obstacle is the lack of insurance reimbursement or financial incentive for the time physicians spend talking to patients about end-of-life planning.39 These constraints, however, are only one part of a complex range of factors that inform how we die now.

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In the death and dying literature, certain narratives repeatedly emerge about why “the American way of death” is as it is.40 Prominent among these is a narrative highlighting the fetishization of new technologies and the work that “technological brinkmanship” does to support a pervasive culture of death denial and salvationary medicine.41 Addressing this tendency in his classic text How We Die, Sherwin Nuland writes that “The ultimate aim of the scientist is not only knowledge for the sake of knowledge, but knowledge with the aim of overcoming that in our environment which he views as hostile. None of the acts of nature (or Nature) is more hostile than death. Every time a patient dies, his doctor is reminded that his own and mankind’s control over natural forces is limited and will always remain so.”42 One need not be a particular technology fetishist to hope that medical science will make progress against at least those natural forces that entail suffering or premature death. At the same time, techno-worship and death denial is in many ways the norm in the United States, not the exception. A 2017 New Yorker article recently captured this ethos, exploring “Silicone Valley’s Quest to Live Forever.”43 After dropping the names of an array of tech and entertainment celebrities, patent managers, and venture capitalists who gathered in the hills above Los Angeles for a symposium on longevity (essentially a fundraiser for the National Academy of Medicine’s “Grand Challenge in Healthy Longevity”), the article introduces Martine Rothblatt, “the founder of a biotech firm called United Therapeutics, which intends to grow new organs from people’s DNA”: “Clearly, it is possible, through technology, to make death optional,” Rothblatt said. (She has already commissioned a backup version of her wife, Bina—a “mindclone” robot named Bina48.) Aging has long lacked the kind of vocal constituency that raised awareness of H.I.V.  and breast cancer; as a species, we stink at mobilizing against a deferred collective calamity (see: climate change). The old wax fatalistic, and the young don’t really believe they’ll grow old. But Rothblatt suggested that the evening marked an inflection point. Turning to Dzau [the President of the National Academy of Medicine], she declared, “It’s enormously gratifying to have the epitome of the establishment, the head of the National Academy of Medicine, say, ‘We, too, choose to make death optional!’ ”

As of yet, death is not optional.44 And over and over critics of American death culture point to the “servile bondage” of physicians to technology and

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the physician hubris that such technological expertise feeds (not to mention the mystical economy of hope that the dying and their loved ones enter into when they enter the space of “Hospital Land USA”).45 When you situate this confidence in technology within the context of the overlapping rationalities of benevolent paternalism and neoliberalism, the constraints and norms of medical training, the pervasive imperatives of insurance companies and pharmaceutical industry–driven research apparatuses, and the increasingly global reframing of the politics of life in terms of bioeconomics and biocapitalism,46 the complexity of the “practical problem” comes into focus. In “The Meaning and Value of Death,” Ira Byock emphasizes the role of medical education in this trend. He notes specifically the training of doctors as “warriors against death” and the propensity to cast psychological and emotional tending during dying as “women’s work” (and frequently work done by poorly paid women of color with little job security and no benefits).47 Kenneth Fisher’s In Defiance of Death identifies eight factors that have been formative in constituting contemporary death culture. Like Byock, he assigns dimensions of medical education a fair amount of the blame. But he also examines policies like the Patient Self-Determination Act and the Americans with Disabilities Act, and quasi-legal practices like the use of advance directives, for their roles in oversimplifying the dying process and creating a context in which patients assume that the job of the doctor is to do what the patient wants.48 The rise of the “choice paradigm” and the ethos of medical consumerism that these (nonetheless important) policy and legal developments contributed to has had the unintended consequence, he argues, of presenting “options that are not real, like the option of not dying of a terminal illness.”49 Again, rarely is there “nothing more that doctors can do.”50 And as noted by Sulik and Eich-Krohm, whose work on medical consumerism I discussed in Chapter 1, the empowerment rhetoric that pervades healthcare discourse and marketing bolsters this phenomenon by reinforcing a tight logic of information→choice→empowered decision making→quality of care→desired outcome.51 Even palliative care can unwittingly contribute to this reasoning, by systematically avoiding the question of “the good death” and focusing instead on “quality of life.”52 In A Social History of Dying, Allan Kellehear takes a long view in tracing these cultural shifts in our relationship to death. Broadly, Kellehear tells the story of the quest for a “good death” in pastoral society, for a “well-managed death” in industrial society, and finally for a “tamed death” in the face of the “shameful death” in contemporary technocratic society. In Kellehear’s

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account, the pastoral good death was defined by the presence and participation of the dying in the process:  their awareness that their dying time was upon them (listening to their own embodied knowledge, versus having others know before they did), and their having attended to provisions for the welfare of the family and community they will leave behind.53 In this way, the good death was a final testament to a good life. With increasing industrialization, urbanization, and the rise of professions and the middle class, the participatory good death that was a community affair gave way to the privately orchestrated well-managed death: a death made “good” by being able to arrange for the right people to attend to your dying.54 Kellehear describes this shift in terms of the “serviced nature of dying,” wherein the doctor, the lawyer, and the priest became the key figures administering the needs of the dying so that others did not have to. For Kellehear, this development marks the origin of the dying as “patient” and then “health consumer,” “client,” and even “research subject.”55 Here the knowledge about death’s immanence comes not from the dying themselves, but from authoritative experts, who can be observed coming and going from sequestered quarters with increasing frequency as death nears.56 As modern secularization and technologization gave rise to an increasingly anxious relation to death, Kellehear writes, “death required not only preparation, but also concerted efforts towards taming its more uncomfortable physical and social aspects.”57 Here we see not so much a rational managerial approach as a sanitizing, anesthetizing, and forestalling impulse. Kellehear is clear about the extent to which the contemporary lack of acceptance of death is often a privilege of elites with certain prosperity and access to particular health services. For most people dying around the globe today (of poverty, AIDS, war and other forms of violence, severely degenerative diseases, and deprivation), death is premature and painful. Even in advanced industrial democracies with highly developed and more widely accessible healthcare, experiences with end-of-life treatment can differ importantly along the lines of race, class, gender, sexuality, disability status, and age.58 Moreover, medical advances lead more and more people to die in bodies that have long outlived their minds and social networks. Thus death can often be neither “good” nor “well managed” even for those with resources and minimal physical suffering. Ironically, resources may now compound dimensions of this problem by extending periods of dependency and pain, uncoupled from the social and familial relations, rituals, and traditions that previously made dying at least somewhat less scary, lonely, and stigmatized.

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In “The Shameful Death:  Implications for Public Health,” Steve Conway explores the rise of medical consumerism and the discourse of patient choice I have been describing in terms of the individualist ethos it fosters absent guiding cultural scripts about what the “good death” consists of. In this ethos, no one can judge any other person’s death as good or bad; rather, we each get to tailor the experience for ourselves, according to our own criteria.59 But this individualist ethos ignores or masks certain key points. First, while “the best way to die” is importantly recognized as a site of contestation, 90% of people in the United States describe roughly the same general desires. There is not great variation, at least in terms of imagined ideals. Second, actual choice in a clinical context often ends up being quite delimited by systemic factors (medical, legal, policy, insurance). So where there is variation, it is not necessarily because of individual idiosyncrasies or “choices.” In this sense our deaths are never really “ours,” and decisions about “the good death” are often tacit, or determined primarily by default to the situated knowledge and norms of healthcare professionals. Finally, scholars and activists advocating for public discourse on and shared conceptions of “the good death” highlight not just the pervasiveness of cultural death denial, but a widespread lack of “death competence” even among those practitioners, patients, and families who would want to do things differently. As Erickson writes, in How We Die Now, “Living in a culture that supports incompetence rather than knowledge and awareness about death and dying, many Americans could benefit from access to the special lessons that death experts can teach us about how we die now.”60

Humility, Autonomy, and Death We are unlikely to receive such lessons during the mainstream medicalized process of dying or escorting a loved one toward death. Again, doctors are not reimbursed for time spent on this kind of care, and contact with bona fide “death experts” in a hospice setting, not just palliative care dispensers, comes too late in the game for most people, if at all.61 It is important to note here that I am not glorifying hospice as an apolitical zone of harmony, outside of the zone of medicalization and contestation that is “Hospital Land.” As Wendy Simonds notes, “Hospital Land” does not end at the clinic boundaries, but is a logic that extends out into the many adjunct spaces of healthcare. There is no pure space that does not somehow reflect the dominant medical

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framework, even if primarily by rejecting it. Moreover, as Alex Broom shows in “On Euthanasia, Resistance, and Redemption: The Moralities and Politics of a Hospice,” hospice care has its own norms and constraints, and should be recognized as a highly political organizational setting.62 This was particularly the case for the inpatient hospice unit that Broom studied, set within a Catholic hospital system in Australia where “the intimate interplay of medicalization and religiosity” was on full display.63 While hospice, like homebirth, can be figured as a site of “systemschallenging praxis”—a space of resistance to the managerial hyperinterventionism of mainstream medicine, and the biopolitical imperative to maximize life at all costs—it is still not a domain of total choice and control. If conversations about “the good death” are largely absent within the mainstream medical approach to death and dying, within hospice they are thoroughly present and often carry a clear message about what a good death entails. These normative commitments include personal growth toward death, making peace with life and its end, resolving lingering familial tensions, and, importantly, allowing death to follow its own natural course. Overwhelmingly (since only about seventeen jurisdictions globally allow for PAD, including, in the United States, eight states and the District of Columbia64), the timely death as conceptualized within the hospice framework is the one the body “chooses.” Talk of accelerated or assisted dying can be regarded as a sign of depression that must be treated in order for one to achieve a good death, not an expression of rational clarity or agency by the dying. Outside of the hospice value-framework, disability rights activists have also contested PAD as risky for vulnerable subjects: those physically or mentally dependent, traditionally excluded from decision making about their care, and potentially regarded as costly or burdensome. In their analysis of the 2015 Canadian Supreme Court case that legalized PAD in Canada, Karsoho et al. note that the bias against hastened death likely reflects the tendency of opponents of PAD to focus primarily on the “final act”; that moment at which a medical authority administers a lethal dose of medication. Their interviews showed, though, that many proponents of PAD, advocating for this right in the Canada case, tended to focus on the broader process. It was not simply the option of death and some kind of control over it that they highlighted, but rather what they hoped could be an interactive and relational period of time leading up to that final act. Crucially, in the Canadian context at least, the emphasis among respondents was on the relationship to

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the physician, in a medical setting. Instead of resisting the medicalization of death and dying by exiting the space of the clinic and opting for emotional and physical support in hospice as death takes its natural course, advocates talked about reclaiming agency in death through medicalized assisted dying. That is, they sought to challenge the dominant notion that assisted dying was a nonmedical event; something that occurred when medicine proper had nothing else to offer, and thus something from which doctors could exempt themselves. The medical context, here, served to provide dying people a sense of control, with the administering of fatal doses of medication being seen as safer or less likely to cause pain or go awry when done by a doctor in a clinical setting. But more than this, patients talked about the involvement of physicians in dying as a systems-challenging practice aimed at transforming medicine, by institutionalizing empathetic engagement between doctors and dying people. The right to die was seen as facilitating therapeutic talk— preparation for death, not merely planning for the final act—that affected not only patients, but doctors, too. They write, “proponents argue that when considering patients’ requests for PAD, physicians would need to expend emotional labour to overcome the ingrained ethical obligation to maintain life and identify fully instead with patients’ suffering.”65 While the focus on autonomy in discourse on PAD is important, Karsoho et al. help us grasp the kind of autonomy many dying patients desire. This is an autonomy that can only be fully understood by looking at the shared vulnerability and humility they seek from the practitioners who they see themselves as not merely dependent on, but interdependent with. Hospice care, of course, is known for being highly relational, and this is often what patients and families value about it. Broom describes the ongoing conversation about the good death in a hospice setting as one key way in which “autonomy becomes more and more relationally negotiated”—facilitated by a team of skilled physical, psychological, and emotional caregivers who cultivate death competence in the dying and their loved ones. Hospice caregivers work to situate the path toward death within a value system that directly addresses “the existential,” and takes shape against the “prolongevism” associated with mainstream medicine.66 Here, again, we see autonomy as linked not merely to “choice” but to the more substantive idea of “dignity” for people whose choices are extremely limited, or who may require extensive help in making them. In this way, the discourses surrounding hospice and PAD are similar. In both, meaningful autonomy—for the dying,

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as well as for the intimate and professional caregivers attending to them67— is possible only against a backdrop of humility about what the end of life involves and the fact that we will all, at some point, face that reality (whether we actively confront it or not).68 This includes the humility of the experts tending to patients during their dying time. “Physician hubris” is a trope that circulates throughout debates in the United States about death and dying, and healthcare generally. In the previous chapter I  explored this issue with regard to contemporary birth practices, within which the birthing body gets figured as a precarious object for a technical expert to benevolently manage and manipulate to mitigate risk and maximize good outcomes. As an example of this stereotype, I described a Monty Python skit in which a birthing woman was left on a gurney, behind shiny machines that go “bing,” and forgotten. When located, she asks what she can do to help, to which the doctors replied, “Nothing dear, you’re not qualified!” In birth, the specter of maternal or infant mortality undergirds many of the ways in which the birthing subject is solicited, or even required by hospital protocol, insurance imperative, and even law to internalize the logic of medicalized birth. The birthing person is framed as a rational, autonomous subject to the extent that she shares a particular risk calculus, recognizes informed consent as her opportunity for “control,” and sees selecting from a limited menu of preapproved treatment options as “choice.” If autonomy in this picture is reduced to thin and tightly delimited forms of choice and control, humility is reduced to faith in and deference to an expert authority under conditions of mortal risk. In death, mortality is no longer merely a risk. The stakes are still extraordinarily high, of course. We want more days, we want comfort and connection while we live them, and many of us want to feel like we are meaningful participants in the process of dying, as unchosen as it is. But the stakes are also high because, as the philosopher Geoffrey Scarre points out, “dying, like most other human acts, can be done well or badly. But unlike many other things we do, we only die once, so it is important to get it right the first time.”69 In surveying common dimensions of death and dying in the United States, however, it is clear that discourses on dying well remain at the margins of medical-institutional efforts to stave off death. To the extent that dying represents a shameful failure of sovereignty over the self, humility appears as part and parcel with humiliation, or the lowliness of being mortal—only human. If Monty Python captured the caricature of modern

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childbirth in the skit I mentioned earlier, from “The Meaning of Life,” the well-known counterpart for death is a skit from “Monty Python and the Holy Grail” called “Not Dead Yet.” In the skit we see an elderly man protesting being delivered up to the fellow pushing the body cart through town yelling, “Bring out your dead!” The man’s resistance includes yelling, “I’m fine,” “I think I’ll go for a walk,” “I feel happy,” and “I’m not dead yet.”70 While not about physician hubris, because set in a plague-ish dark ages seemingly lacking physicians, this skit plays up the humiliating and fearful dimensions of dying. The dead will not ultimately be remotely in charge of their end, and meeting that end is akin to becoming one more depersonalized body on the cart. By contrast, hyper-medicalized dying looks civilized and humane. And yet, while few of us would be inclined toward the body cart, institutionalized death and dying in the United States, from the nursing home to the ICU, is experienced as only partial progress by the majority of people. So we must ask: who is the citizen of the “civilized” death? And how are they subjected as such within the contemporary practice and ethos of medicalinstitutional death and dying?

Dying as a Site of Potential Political Awakening In this section I put the analysis developed so far into the terms of recent debates in political theory. The account of humility-informed-relationalautonomy that I  proffer seeks to contribute some insight about the quest for self-determination within conditions of relative unfreedom. There is no better way, it seems, to characterize the kind of dying I have explored here—dying that provides the time to make choices, but frequently denies the conditions necessary to experience those choices as meaningful, empowering, or a way of breathing some life and agency into a space defined by their impending end. If there are normative and redemptive undertones here, and I’m sure there are, I hope they can be heard as Nietzschean and Arendtian, not as another form of death denial or neoliberal “lemons into lemonade” (we can stave off death and ultimately make it more acceptable, even good!, if we just manage the details right).71 To Bonnie Honig’s reminder in Antigone, Interrupted, that “action exposes us to mortality, we may die in action, after all,” I juxtapose the reminder that “mortality exposes us to action, we may act in dying, after all.” Or at least we may come to see that such a thing is valuable.

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One point, however, bears mentioning here. In the chapter on birth I was interested partly in how experiences of corporeal vulnerability and dependence, in contexts of asymmetric power and knowledge, might serve as a site of potential political awakening. And I was interested in this question from the perspective of dispositions of critical citizenship, or new kinds of political subjectivities that people might take away from the labor and delivery room (or birthing tub) and back into their lives as citizens. In the context of death, this concern must be fleshed out in terms of the fact that the dying, once dead, do not take new subjectivities back into the world with them and act as different kinds of citizens.72 Their intimates and other caregivers, however, may. When death is a relational process, loved ones co-navigating dying are who remain to integrate that experience into their sense of self and citizensubjectivity. Dying matters for the living—not just the loss, but the process (recall the statistic cited at the outset, about how intimates tending to those who die in the ICU have rates of depression three times higher six months after the death). Sometimes the impact of undergoing the experience of assisting another in death is purely psychological or emotional. And sometimes, despite the ultimate loss, a big part of that emotional experience is quite positive.73 Oftentimes, though, as data show, the experience is negative, disorienting, destabilizing, frustrating, confusing, and scary. Sometimes the impact of the experience of vulnerability and exposure is to spur legal action (as when one thinks the process was botched enough to sue the doctor or hospital). Sometimes the impact is primarily ethical (as when one thinks the process was botched, but longs for a personal apology and not a legal judgment).74 And sometimes the experience is distinctly politicizing. How we undergo a loved one’s death may potentially politicize us in multiple ways. In the most direct way, a surviving compatriot may take up the cause of mobilizing others to act in concert to reform institutionalized death and dying practices, policies, and procedures. In this sense, democratic, activist subjectivity flows right out of the experience and targets the specific thing experienced. To put this response into the framework of recent works by Ella Myers and Bonnie Honig, this response casts death and dying as a “public thing,” and the activism takes its direction from the specific thing in the world it seeks to change.75 But the connection between the experience with asymmetric power and knowledge in institutionalized dying may also have a more indirect politicizing effect. It may give rise to an ethical sensibility that inclines a person to

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be “ready for politics,” attuned to power and its effects, and resistant to being governed in certain ways (ever again), so that when they encounter these forces acting on their body and mind in totally unrelated places later on, they are disposed to act differently than they might have. I explored something like this idea in an earlier analysis of Judith Butler’s ethical dispositions, where I argued for interpreting her work as suggesting that ethical encounters in contexts of vulnerability and exposure function to “prepare” us for politics.76 The ethical encounters we undergo affectively alter us, potentially generating a sensibility that makes a critical and resistant political subjectivity more possible. What that subjectivity attaches to and mobilizes around, however, may have nothing to do with ‘deathcare’ reform.77 To step back and situate this consideration more broadly:  I agree with Butler that the human condition is defined by a shared, fundamental finitude and precariousness. Recognizing and embracing this condition can potentially affect how we act with and on others, or restrain ourselves when we desire to act on others violently. Sometimes, rather than generosity, humility, and restraint, the effects of recognizing our vulnerability may be greater aggression or violence so as to stanch our own exposure.78 Sometimes the effects may be singularizing and not collectivizing (this is Honig’s reading of Lila Lipscomb, as Michael Moore depicts her in “Fahrenheit 9/11”—she remains in the space of her ethical singularity and forgoes the opportunity to engage in contestation and struggle, or to act politically, with others). But sometimes this is not the case. Thus I disagree with Honig’s conclusion that Butler’s “mortalist humanism” represents a retreat to ethics that is essentially depoliticizing. Vulnerability and exposure are constitutive and undeniable, but they are not the only essential dimensions of human existence.79 Nor must a fundamental vulnerability necessarily displace from politics. In the interview that I referenced in Chapter 1, and return to in Chapter 6, Honig argued that “vulnerable people are not ones who mount the barricades, or put themselves at risk in the streets, or immerse themselves in communities that need help, or release confidential documents.”80 Here she opposes vulnerability to resistance and the quest for self-determination. As the earlier section on humility and autonomy argues, though, there is no reason that these impulses must be in tension—rather we should recognize them as contributing important dimensions of an overall sensibility that may position vulnerable subjects to be precisely those who mount the barricades, or at least say no, talk back, ask too many questions, demand second opinions, resist logics of maximization and intentionality and responsibility, and still

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see themselves as political agents within the constraints of unfreedom that define so much of our contemporary condition. To label a subject vulnerable is not to foreclose the possibility that she will be, to invoke James Martel’s concept, misinterpellated into action, just when her mortalist docility seems most secured!81 To say this is to point to the natalist impulse that productively partners with our mortal reality. And here I turn back to the context of death to suggest ways in which the dying themselves may be able to make a claim on a new political subjectivity even as choice and control, and futurity itself, are acutely limited. To the extent that dying is a site of contestation in the frequently described struggle to make one’s death one’s own, there is inaugural or vivifying potential as we steer, narrate, or continue to assert ourselves unapologetically and meaningfully into our end game. Who are we interpellated as when we are hailed as “the dying,” and what kind of subjectivity might we make a claim on by resisting or tarrying with that demand? Experiences of extreme corporeal and existential vulnerability may function as a training ground for the cultivation of democratic citizensubjectivity, to be brought to bear on the world later and elsewhere. But such moments may also engender potential political awakenings with a different temporality, which are impossible to conceive instrumentally. Put differently, for living people, political subjectivities function politically when they manifest publicly in order to struggle with others for some change. But this is not the only way new subjectivities can matter politically. When Butler writes in Precarious Life, about asking for recognition from an Other, that “in the asking, in the petition, we have already become something new,” she captures how such moves in ethical spaces can create opportunities to “solicit a beginning” through demand and resistance to being what we were prior to that moment.82 For the dying subject this may be the form that working natalism against mortalism can take, and I contend here that we should see that as a site of politicization because a site of critique and potential transformation.

In Conclusion: The End As Wendy Brown has argued, neoliberal configurations of subjectivity and responsibility have displaced “the institutions and principles aimed at securing democracy, the culture required to nurture it, the energies necessary to animate it, and the subjects practicing and caring for it.”83 I want to argue

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here for death as a site of governance within which we can struggle against this tendency by embracing an ethical sensibility that may ground the emergence of new political subjectivities. Our institutionalized culture of death is defined by two overlapping rationalities—benevolent paternalism, on the one hand, and neoliberal efficiency, optimization, and the logic of “mere life” (or the “politics of life itself ”), on the other. The former absolves (or robs) the dying person of meaningful subjectivity, while the latter harnesses the consumer patient to a form of responsibility as the obligation to be a selfgoverning entrepreneurial life-maximizer. Homo politicus is nowhere in either of these pictures. And maybe that comes as a surprise to virtually no one, since death and dying are not traditionally conceived as political phenomena. Indeed, what is more personal? But as the section in this chapter on how we die now sought to show, however personal one’s own death or the death of a loved one is, dying as a set of practices, policies, and imperatives is a public question (or it ought to be).84 Beyond this, dying is a site of politics because the dying subject is a contingent formation produced within a context saturated with questions of power, knowledge, resource allocation, equity, meaning, participation, and contestation—literally, arguments over ends. To be dying, then, is often, to use the words of Barbara Cruikshank, to be “tangled in a field of power and knowledge that both enables and constrains the possibilities of citizenship.”85 What has come to be called “health citizenship” may take the form of collective action aimed at reforming how a particular disease or syndrome gets publicly signified and addressed. But it may also be a matter of framing ourselves as active citizens within healthcare contexts that subject us to various sources of unfreedom with regard to which we likely have both more and less agency than we think.86 To think in this way is to unsettle both the norm of the citizen and the norm of the patient. It is also to force us to rethink humility, autonomy, and their interdependence, as well as how the cultivated ethical sensibility they ground might serve as a source of moral strength and preparedness for living, dying, and the politics that goes along with each and takes place in between.

5 War-Worn Subjects Veterans, Post-traumatic Stress Disorder, and the Veterans Affairs Mental Health Complex

Three years into my wanderings in the Western mountains and deserts, a government rating decision arrived: “Evaluation of posttraumatic stress disorder is increased to 100 percent, on a permanent basis.” The determination of “Total and Permanent” was made within the Veterans Affairs, a process that included a number of doctors, hearing officers, and appeals boards. Some of the symptoms make the subject sound like a real spit-dribbler, and I’m certain my hearing officer was disappointed I didn’t appear to be an exact match. But I continued to deny aspects of the diagnosis and to hide others. There was a frail logic in this: I refused to let what seemed to be an unavoidable and common consequence of war to mortally disfigure the core of my being. At the same time, the government was stating quite clearly that I was a total whacko and forever unsuited to operate within what they called civilization.1 —Doug Peacock, Walking it Off: A Veteran’s Chronicle of War and Wilderness

I need a hero I’m holding out for a hero ’til the morning light He’s gotta be sure And it’s gotta be soon And he’s gotta be larger than life Larger than life! Where have all the good men gone And where are all the gods? Where’s the streetwise Hercules The Virtues of Vulnerability. Sara Rushing, Oxford University Press (2021). © Oxford University Press. DOI: 10.1093/oso/9780197516645.001.0001.

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Virtues of Vulnerability To fight the rising odds? Isn’t there a white knight upon a fiery steed? Late at night I toss and I turn And I dream of what I need. I need a hero I’m holding out for hero ’til the end of the night He’s gotta be strong And he’s gotta be fast And he’s gotta be fresh from the fight. —Bonnie Tyler, “Holding Out for a Hero”

In his 2009 book Justice, Michael Sandel considers the question, “What Wounds Deserve the Purple Heart?” Should this high military distinction, an entitlement of veterans killed or physically wounded by an enemy in combat, be expanded to include “invisible” psychological injuries such as post-traumatic stress disorder (PTSD)? When asked in 2008 whether he supported such a change, Secretary of Defense Robert Gates replied that this was “clearly something that needs to be looked at.”2 Gates’s response unleashed a heated debate. The Military Order of the Purple Heart (MOPH) argued that, unlike limb loss, PTSD is a “treatable disease.”3 Further, they suggested that opening the Purple Heart to PTSD would invite veterans to feign illness to qualify for Veterans Health Administration (VA for short) medical treatment, and noted that “you can hardly find anyone who has served in combat . . . that doesn’t return with some form of PTSD.”4 While MOPH and other critics framed their responses primarily in terms of practicality and cost, they also made clear that lumping physical injuries together with mental injuries deflates the significance of the Purple Heart because, as Army Captain Matthew Nichols put it, “Every badge hunter and his brother will have this distinguished award in their sights.”5 As another representative for MOPH said, “I don’t think people should get the Purple Heart for almost getting wounded.”6 Sandel rightly argues that, at its core, this debate is neither medical nor clinical.7 Rather, the crux of the disagreement lies in “rival conceptions of moral character and military valor. Those who insist that only bleeding wounds should count believe that post-traumatic stress reflects a weakness of character unworthy of honor.”8 And yet, character, virtue, and values does not fully capture the stakes here. There is a broader cultural and political

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ambivalence about how to understand and address the identities and needs of the wounded warriors produced by our over-decade-long military conflicts in Iraq and Afghanistan, an ambivalence that reflects bias against mental illness as much as questions about war and warriors. At work here are acute anxieties about vulnerability and interdependence, the visibility and invisibility of whatever makes us human, and the very nature and possibility of autonomy.9 These questions are particularly intense as they take shape within the context of war, yes, but also as they are formed under the pressures of neoliberal rationality—a logic that profoundly impacts how we think about personal responsibility, freedom, and citizenship, and that increasingly permeates (and is fortified within) mainstream medical and military institutions. Building on the framework developed in the previous chapters for thinking about humility, autonomy, and the potential awakening of citizensubjectivity in birth and death, I extend my analysis here to the context of “illness,” focusing on the life-altering mental illness experienced by many soldiers returning from our current wars. What Eli Clare has called the “ideology of cure” is conspicuous here, because the promise of “medical intervention returning body-minds deemed abnormal to their natural states of being” has particular moral significance in the military context.10 Analyzing military PTSD illustrates how deeply entangled disease construction, diagnosis, and “cure” are with the complex discourse of “choice and control,” or with medicalization under the pressures of neoliberal rationality. Like with birth and death, but perhaps even more so, veteran PTSD as taken up within the VA is a site of subjection and potential contestation from which we can learn much about the production of citizen-subjectivity in moments of distinct corporeal and psychic vulnerability. As Clare puts it, we must “read diagnosis as a source of knowledge, sometimes trustworthy, sometimes suspect. As a tool and a weapon shaped by particular belief systems, useful and dangerous by turns. . . . . Simply put, diagnosis wields immense power.”11 In this chapter I argue that by considering veterans and the VA mental health complex we can further grasp the way those who enter the clinic enter into increasingly hyper-medicalized and interventionist power/knowledge configurations, within which they are never merely “treated,” but rather subjected as certain kinds of patients and interpellated as certain kinds of health citizens. My inquiry here is animated by the broader cultural tensions regarding the “problem” of how to deal with veterans returning with PTSD; or how discourses on “wounded warriors”—a designation aiming to capture both

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the heroic and confounded dimensions of the veteran body-mind—get bound up with political debates about security, sovereignty, and militarism. More precisely, though, I am interested in the potential awakening of citizen-subjectivity within particular medical-institutional contexts. Like the previous chapters, then, this chapter weaves together insights from a diverse array of sources to explore three interwoven “problems,” conceptual, practical, and political. How do conceptions of humility (with connotations of dependence) and autonomy (with connotations of independence) infuse the terrain of VA PTSD mental healthcare, via understandings of doctor– patient relations and shifting modes of interpellating soldiers-as-patients-ascitizens? What are the power structures, policy frameworks, mental health knowledges, and resource constraints that inform how those relationships and practices take shape? What experiences may inform patients’ desires to seek care outside the traditional institutional treatment options available at the VA, when those approaches are found wanting? And how might the experience of challenging or exiting the clinic generate critical citizensubjectivities? In sum, if the clinic is a site of political learning, what lessons about citizenship may be learned by veterans-as-patients as they travel the path through the VA toward “recovery”?

Mounting Numbers, Changing Treatments The practical problem grounding this chapter is this: our prolonged military engagement in the Middle East and beyond—the so-called long war, forever war, or global war on terror—has produced record numbers of returning wounded soldiers.12 Injuries that used to be fatal are now often survivable, treatable, and “merely” chronic.13 Our VA healthcare system is a highly bureaucratized apparatus under extreme financial and political pressure, a situation the Washington Post extensively documented in its 2007 Pulitzer Prize–winning coverage of the failures at Walter Reed National Military Medical Center. Pre-enlistment promises often fail to align with the reality lived after combat.14 And when many of the wounded are returning with “invisible” injuries like PTSD, questions of rehabilitation and return to civilian life are bound up not only with the military’s framework for honor, status, and compensation at discharge, but with deep cultural tensions regarding mental versus physical disability, not to mention masculinity.15 As the debate over Purple Heart eligibility shows, tangible physical changes to a body are

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easier to grasp as evidence of combat, even when those changes involve absence.16 A missing limb can be its own form of visual marker. Moreover, in an era of high-tech prosthetics, which no longer seek to mimic the lost human limb, but deploy the latest biomedical engineering to surpass the human in strength and durability, that absence can be filled by what is increasingly culturally recoded as a badge of honor.17 Of course, such symbolic infusion can go awry. In the Netflix series “Orange Is the New Black,” for example, the character John Bennett is an Afghanistan veteran with a prosthetic leg, but not because of a combat wound. In fact, he got an infection from a hot tub after returning from a war where he saw no combat. This leg is coded as heroic, though, and he suffers the continual humiliation of having to clarify that it is not. Though recognition of combat fatigue, or “war weariness,” goes back to the ancient world, it has had various modern constructions prior to being medically encoded as PTSD, which was only formally recognized as a disorder by the American Psychological Association in 1980 in the wake of the Vietnam War.18 Having achieved visibility and social status and recognition, a similar tension as with prosthetics emerges—to honor the sacrifice veterans make, we work to socially recode PTSD as the noble byproduct of combat, which entails bravery and risk. Yet among veterans returning from Iraq and Afghanistan who are likely to have PTSD, a significant number cannot cite combat as the source. For women, in particular, growing rates of PTSD are directly linked to military sexual trauma (MST) inflicted during service by a fellow soldier or superior. Diagnosis, treatment, and compensation claims for MST-related PTSD were routinely denied until 2014, when the military re-reviewed many applications and granted their requests. MST is associated with higher rates of PTSD than combat exposure.19 Contemporary discourses and practices continue to reveal deep ambivalence about how to frame, contextualize, and address PTSD. This ambivalence is inextricable from questions of vulnerable American sovereignty and the quest for global military autonomy in an increasingly interdependent world. Tensions are undoubtedly also related to the question of how to grieve losses and bear costs that are not yet (and might never be) fully tallied; losses incurred from forms of combat (when incurred from combat at all) that we are only slowly coming to understand as the paradigm of conventional warfare and conscription becomes history. In the shadow of these broader issues and pressures, military and medical professionals continue to ask: is PTSD an injury, an illness, or a temporary or permanent disability? Is PTSD merely

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expected combat trauma; the price of doing business? In other words, is PTSD not, in fact, a “disorder,” but simply the order of things in war?20 In her book Fields of Combat:  Understanding PTSD Among Veterans of Iraq and Afghanistan, the anthropologist Erin Finley provides a rich account of these tensions through the lens of one VA hospital in San Antonio, Texas, where she conducted two years of ethnographic research in the mid2000s. In particular, Finley examines the fluidity of PTSD as a biomedical category, given how it is implicated in both developing mental health treatment paradigms, and economic, cultural, and political narratives about warrelated suffering and the costs of militarism in a post-draft era. Finley figures the VA medical complex as one of the sites of struggle, or “fields of combat,” where veterans with PTSD work out the meaning of their identities and lives after war. As such, she hones in on shifting models of treatment and care that inform how we understand whether PTSD is an injury, illness, or disability. Most interesting for my purposes is the shift she traces from (1) the advent of recognizing PTSD as a distinct diagnosis, not just depression or anxiety that happened to be created by trauma, to (2) regarding it as a lifelong disorder best treated on an ongoing basis through individual and group psychodynamic therapy, to (3) the recent refiguring of PTSD by a new generation of clinicians as a curable illness or “disease state” that “evidence-supported treatments” like exposure therapy and other cognitive-behavioral therapies should address in nine to twelve weeks of intensive work.21 Finley describes these changes in terms of “shifting the model from one of chronic suffering to one of recovery and resilience.”22 To the untrained ear, this sounds like progress. Yet Finley heeds the seasoned psychodynamic practitioners she interviewed, who reminded her repeatedly that the evidence behind these evidence-based approaches was not yet clear or compelling. As one vocal critic of the discourse of evidencebased, “scientific” theories argues, “No research findings ever suggested that manualized [cognitive-based therapy] was more effective than psychodynamic therapy. It was just more often studied in research findings. There is a world of difference between saying that a treatment has not been exhaustively researched and saying that it has been scientifically discredited. But academic researchers routinely blurred this distinction.”23 Medical anthropologists persistently point out that diagnoses and treatment regimens are not merely the product of technological innovation and increasingly better science. Rather, they take shape within particular conditions and relationships, where contestation over meaning and value is present but often masked, and where

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various interests can be served in various ways by pathologization. Simply put, diagnoses are “invented, not discovered.”24 Once invented, practitioners themselves often become deeply invested in the diagnosis and its Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria, which can provide a sense of self-protective objectivity and professionalism. Like with birth and death, the relational dynamic between doctor and patient is important here, and humility is required from both parties to enable the interdependent psychic vulnerability that therapy entails. With regard to combat-related PTSD, however, some critics have argued that “the pressure to focus on whether or not the soldier fits the PTSD criteria . . . becomes a handy shorthand that allows distancing and avoiding the actual horror of war experiences by the mental health professional.”25 Biologizing PTSD may buffer practitioners against many different kinds of pressure, not the least of which is their own emotional experience, allowing them to treat the “disease” or symptom bundle efficiently and competently, if not necessarily effectively. In light of these tensions, Finley pieces apart, diplomatically, the ethos of the contemporary VA PTSD landscape: the managerial, interventionist, metric-oriented, at least partly efficiency-driven and cost-mitigating shift toward treatments that tout empirical support and ready standardization. Proponents of this shift framed it to Finley as essential for addressing the “culture of chronic support” blamed for creating a twoyear backlog of cases at the clinic where she did her research.26 While long VA wait times certainly deserve attention, shifting trends in diagnostic and treatment protocols almost always reflect a broader matrix of forces. As Clare writes, “The DSM is a highly constructed projection placed on top of particular body-mind experiences in order to label, organize, and make meaning of them from within a specific worldview.”27 Clare characterizes this worldview in terms of “cure,” an ableist ideology of self-mastery that “would have us believe that whole and broken are opposites and that the latter has no value.”28 As I interpret cure, it is bound up with the “worldviews” of medicalization and neoliberalism, the dominant systems of power and knowledge about the body within which diagnosis seeks to make PTSD more like a concussion (an injury you can get over) than like schizophrenia (a mental illness that is part of you). Paralleling trends outlined in my analyses of birth and death—of increasing medicalization and the emphasis on normative time, measurable benefits, and reliable outcomes across a population of subjects—in Finley’s account we see the demeaning of “counseling” in favor of aggressive, technical,

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interventionist approaches that many of the doctors she interviewed likened to “surgery” (one clinical psychologist Finley interviewed commented that counselors were afraid of the new technologies, because “they like to pet their patients rather than make them suffer sometimes”).29 The previously dominant “counseling paradigm” involved a psychodynamic process of patientdriven exploration of “loss of trust in the self, loss of trust in the world, loss of innocence,” and “relied upon a language for describing PTSD that drew heavily on concepts like the ego and the self, on listening and empathy, on guilt and shame.”30 This kind of therapeutic process requires, above all, the time to forge deep relational interdependencies (the “dynamic” dimension) with mental health professionals and group therapy peers. In contrast, the “evidence-based,” manualized paradigm and its most conspicuous approach at the VA, prolonged exposure therapy, relies on the intervention and direction by a medical authority to facilitate the active, repeat recounting of the trauma so that the patient learns to manage the anxiety it creates and thus recovers from the trauma. As one early consideration of the rise of manualized therapy notes, the primary skill required by the therapist in this approach is understanding and implementing the treatment protocol outlined in the manual.31 The benefit of manualized standardization is efficient and consistent delivery of treatment, which is understandably attractive to a large, national, federally funded program like the VA. The risk, as the article notes (but quickly dismisses), is the potential loss of “clinical artistry” in favor of an “actuarial approach to assessment and therapy.”32 Follow the steps, and recovery is yours. Another recent analysis, however, makes clear that many soldiers are wary of this “surgical” approach to healing. Trips to “the wizard,” as psychiatrists are often called, can be dreaded. In one veteran’s words, “the psychiatrist there was crazy, and I told him never to see me again.”33 Another describes his fear in undergoing prolonged exposure therapy within a month of returning from combat, saying “it really . . . kind of shut me down. Like my body just kind of . . . fought back to feel anything and fought too hard. And I didn’t feel anything, and it made it pretty difficult for a while.”34 Many other soldiers express deep distrust of therapists with no military service, let alone combat experience. What this study showed is that recovery is a complex, dynamic, and deeply relational process, where autonomy on the part of veterans requires interacting levels of connection. First, connection to self, in being treated as a whole person and not a set of symptoms. Next, connection to community, through support from other

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vets who share their experiences and with whom they can narrate and renarrate their sense of self, as well as civilian supporters who are willing to share the burden of and accountability for our war beyond a simple “thank you for your service.” Finally, connection to caregiver, with continuity in who is providing treatment and time allowed for that relationship to become one of trust. Staffing shortages and turnover rates at the VA have made continuity of care challenging, however, and soldiers complain about having to tell their stories over and over to a slew of different professionals.35 In contrast, when they are able to retell their stories to the same person or people, those people function as crucial “story keepers,” and studies show that this relational dimension creates “affective attunement” and fosters a healing sense of cohesion in time and identity.36 The idea that one can heal from or be “cured” of PTSD is immensely empowering for many veterans, not least those seeking eventual combat redeployment. For others, however, the normative ideal of recovery is troubling for various reasons. They may recognize that recovery is linked to a potential decrease in military compensation and support, as well as the loss of community and the social bonds within which they find meaning and solace after returning from the intense solidarity of combat. Or they may fear that they will fail at recovering, and thus be failed military, mental, and medical subjects. Most veterans diagnosed with PTSD will never seek therapy, let alone sustain a full course of exposure therapy that requires them to relive their traumatic experiences over and over.37 As a 2013 national survey found, “the median number of therapy sessions attended by [Operation Enduring Freedom/ Operation Iraqi Freedom] veterans was two.”38 A 2015 review of the literature and statistics noted that in “real-world settings,” as compared to randomized controlled trials, these VA-designated “gold standard,” “evidence-based” PTSD therapies have estimated dropout rates of 35% to 68%. This is just among those who begin this course of treatment (already a low number). Importantly, these rates follow “a decade of exemplary and highly expensive training and roll-out efforts on the largest scale ever conducted” for veteran mental health treatment promotion.39 Also importantly, studies have shown that “two-thirds of veterans who complete cognitive-processing therapy or prolonged exposure therapy retain a PTSD diagnosis,” and are thus considered to have “treatment resistant” PTSD, making “recovery” unlikely.40 Recovery is a widely shared aspiration, but within the mainstream VA approach to PTSD treatment it continues to elude far too many soldiers, from the Vietnam era to the present. Stories of personal suffering and tragedy are

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plentiful. But the issue of mental health treatment paradigms for returning veterans is not merely a personal or private medical question. This is a matter for public debate, albeit a delicate one. Delicate, because the dominant cultural figuring of veterans as heroes who have sacrificed for our security and freedom makes them privileged and powerful healthcare consumers, and makes questioning benefits for them taboo. Delicate, as well, because unpacking the costs, benefits, and effectiveness of different VA mental health regimens is bound to raise ideologically divisive questions about the justice, necessity, and affordability of war, as well as questions about government involvement in the provision of healthcare, and who has a right to access it.41 Finally, understanding and analyzing the terrain of VA mental health treatment for PTSD is delicate because of the complicated ways that notions of humility and autonomy manifest in an increasingly managerial militarymedical complex.

Humility and Autonomy at the VA: The Soldier as Patient as Citizen As the previous chapters argued, reading specific medical contexts through the lens of humility and autonomy provides a way to examine how medical authorities recognize, interact with, and treat patients, and how patients are subjected within and navigate systems of care and their attendant power structures and knowledge/value frameworks. The VA mental health system is an institutional complex serving people undergoing experiences of extreme vulnerability and dependence, and like with birth and death one needs both humility and autonomy to navigate a diagnosis of PTSD therein. But the dynamics of how humility and autonomy operate may be different at the VA compared to medical-institutional practices of birth and death, which touch a much wider swath of the population (indeed, all of us!). Soldiers who arrive at the VA are not typical patients. There are distinct dimensions of active-service military life, such as regimentation, hierarchical culture, and the combination of being deeply enmeshed in and frequently uprooted by an institution. Serving in the military is not merely a job like any other, because it entails preparing for war. The “military mindset” has been developed to mentally train people for this life and job—for mobility, conformity, discipline, valor, and so on. What this means, though, is that the veterans who emerge are forged

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in a context where neither humility nor autonomy is a highly valued trait; these are not components of, and may even be at odds with, the military mindset. As Sandra Whitworth maps out, in “Militarized Masculinity and Post-Traumatic Stress Disorder,” a form of what she calls “humiliation” is central to breaking civilians down and turning them into soldiers through boot camp.42 Where humility exists within the military context, Whitworth suggests it is a disposition of deference to the total institution of which one is but a tiny part, and on which one is thoroughly dependent. Humility in this sense develops through the process of “depersonalizing” the soldier. Socialization to the military mindset and training for combat readiness has also traditionally been understood to require setting aside any impulse toward autonomy, and becoming capable, as Whitworth describes it, of being “an automaton.” More tactfully, we might characterize this process as cultivating soldiers who understand how to thoroughly subordinate individual will to authoritative directive. As the author and veteran Peter Lucier described to me, contemporary combat has, by necessity, devolved a certain kind of autonomy in decision making further and further down the chain of command. Low-level soldiers are now being tasked with tactical choices (if not strategic ones) that they traditionally would not have had authority over. So the life of autonomy in the context of on-the-ground operations in modern war may be evolving. Regardless, though, humility and autonomy in whatever form they emerge in active-duty life bear more resemblance to the limited and conceptually opposed versions of those dispositions than to the empowering, relational versions that I argue for here. In these versions, humility combats humiliation, and autonomy entails interdependence, not just non-interference. From this perspective, the extreme vulnerability-mitigation required to stave off risk in combat seems likely to affect how returning soldiers experience their entry into the mental healthcare system, and the demands associated with seeking trauma treatment. A profound shift in identity and orientation is required: from cultivated impenetrability to necessary vulnerability; from cog in a well-oiled machine to a quasi-choice-making healthcare consumer. In other words, from soldier to patient. Here we return to what I have called the “political problem.” How might our subjectivity as citizens—with impulses toward self-determination within our collective interdependencies and human limitations—be diminished or enhanced when we undergo experiences of intense corporeal and psychic exposure like navigating the recognition, treatment, and integration into our

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identity of forms of illness or disability? In what ways might PTSD be understood as a site of social struggle or contestation, not merely “treatment,” and thus function as a potential site of political awakening as one grapples with the forces and choices at work there? In the previous chapters I presented a detailed mapping of the terrain of contemporary childbirth and contemporary death and dying. Regarding birth, I  looked at trends related to hospital birth, particularly the rapidly rising C-section rate, and also considered people who opted out of the hospital context and gave birth at home. Regarding death and dying, I focused on hospital dying, with a particular interest in long-terminal patients who end up dying in the ICU, as well as the experiences of dying people and their families who decided to forgo the curative framework and transition to hospice a significant length of time before their death. In both domains I raised the question of when mainstream medical “opt-out” might be read as “exit,” and thus when alternative spaces could be figured as sites of resistance to subjugating norms and fraught promises of choice and control. The context of soldiers navigating the VA medical complex when they return from combat with PTSD entails important differences from birth and death. First, as noted at the outset, military PTSD is always already political, and politicized, because it shapes up against a backdrop of war and a cultural politics of shame about mental illness and trauma-related suffering, both of which are also impacted by dominant norms of masculinity.43 Second, VA healthcare is the product of significantly different constraints, imperatives, and pressures than the typical civilian clinic. It is crucial to consider the economics of long-term care for a growing population of people entitled to it. Furthermore, the financial implications of being “cured” are centrally important both for those whose benefits may attach to their disability rating and for those medical personnel who face pressure to clear people for additional military service at a time when the forever war persistently depletes the stock of soldiers.44 Third, the discourse of “choice and control,” the pervasiveness of which I made the case for in the previous chapters, may take a different form within the VA. “Choice” may not be a driving force in the same way, because the “customers” of this particular service provider are not comparable to civilian patients seeking care, both in terms of the different healthcare “marketplace” they are operating in and in terms of the different way we regard combatrelated injuries.45 As a federally run and nationally standardized healthcare system, treatment protocols may be more tightly delimited than in the largely

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for-profit, private healthcare system. Consequently, soldiers-as-patients are less likely to be interpellated as informed consumers of a product, or to be solicited as active or entrepreneurial participants in the process of crafting their unique care regimen. Fourth, my analysis of birth and death took into consideration the spaces to which those opting out of mainstream medicalized treatment could retreat, drawing particularly on Melissa Cheyney’s concept of “systems-challenging praxis” in her work on homebirth as a site of critique and resistance and not merely a “personal choice.”46 In the context of veterans with PTSD, it is not obvious what a systems-challenging or alternative site of care outside the VA would look like, nor whether the concept of “resistance” and critical transformation captures the meaning attached to dropping out/opting out/exiting from the therapies offered there. In birth and death, “the home” (or hospice center, or birth center) provides a clear spatial contrast to the medical institution (the ICU, the nursing home, the labor and delivery unit, the operating room). But for veterans, such an analogue is not immediately apparent. And as Zoë Wool importantly points out, in her study of life at Walter Reed, too much solitude or privacy can be deadly for a veteran suffering from PTSD. The very concept of “home” can be isolating and disorienting, not a site of greater autonomy. Even with these significant differences, however, there are fundamental similarities as well: when we give birth, when we face death, when we encounter life-altering mental or physical illness or grieve our losses, our constitutive vulnerability and interdependence are brought into stark relief, and we cannot outsource that encounter. Despite the prominent cultural discourse on human fragility and the importance of “failure” for personal growth, we modern liberal subjects take a certain sovereignty and self-possession as the norm, and the expectation. And, as discussed at various points across these chapters, within neoliberal rationality this expectation gets converted into a notion of personal responsibility for the management and maximization of our lives. The failure to live up to expectations, for example by losing limbs or losing command over one’s mind, is not only personally devastating but culturally humiliating and politically irresponsible. In Fields of Combat Finley offers numerous quotes from soldiers underscoring this point. In one veteran’s words, PTSD to me is . . . the reaction to the trauma that some of us experience. It’s your failure to properly reintegrate into society. It’s—everybody wants you to do that reintegration process. They want you to be okay. They want you to

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take your camos off, put your civvies on, wash ’em and put ’em in the closet. And they want you to go back to your normal life, the way you were. And a lot of people can’t do that. And so, whether you call it PTSD or anxiety disorder or whatever, you have failed to cut loose those experiences.47

The broadly defined “health citizenship” literature focuses primarily on how we put our citizenship skills to work within healthcare contexts. In asking what kinds of citizens veterans come to the VA clinic as I am partly raising this question. But I am also interested in the perhaps subtle, perhaps speculative, but in my opinion crucially important question raised here about how our experiences in healthcare produce us as citizens, in and beyond the world of the clinic. In the case of the soldier-as-patient, a certain concept of good citizenship is already operative in the (nominally) voluntary decision to serve in defense of the nation.48 So if being subjected as a patient in institutionalized healthcare settings may provide a kind of “citizenship training” for the average civilian, for whom thinking about politics and power is not necessarily a big part of daily life, how might that story have to be modified for the veteran?

The Retreat to “Resilience” To recap: our story so far explores the medicalization of war trauma, whereby the idea of trauma shifts from physical damage to psychological disorder, from common combat experience (shell shock) to individual clinical diagnosis, and from chronic suffering to manageable disorder to curable injury. This final shift points to what Alison Howell and others have described as the contemporary “re-physicalization” of PTSD, aimed at reducing the stigma attached to mental illness.49 Despite the improvements in outreach and treatment that better psychiatric, psychological, and neurological science purport to bring, the Department of Veterans Affairs estimates that as many as 20% of Iraq War veterans have PTSD, and veterans continue to commit suicide (or die what the military calls “unexpected deaths”50) at double the rate of civilians.51 In sum, and to say the least: things aren’t going very well. There have been substantial efforts to refigure, destigmatize, and treat PTSD, and yet this affliction, as Brianne Gallagher details, still earns many a soldier the moniker “PTSD pussy.”52 Masculinity as a mode of social control in the military remains alive and well, and to the extent that suffering from PTSD

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entails fear, lack of self-control, and other symptoms akin to hysteria, soldier bodies risk being coded as female and thus impotent due to psychological trauma. Within “gendered and increasingly bureaucratic systems of militarized power and social control,” PTSD—paired with what Gallagher and others argue is a mandate to continually perform oneself as a “deserving subject” of care—becomes “another way to manage soldier bodies.”53 Critics of this medico-military historical trajectory argue that medicalizing PTSD as a disease—psychological, biological, neurological—functions to depoliticize and individualize it.54 I would argue that this effect is intensified by the recent turn in the military-medical complex to a newfound emphasis on “resilience.” Why treat PTSD after the fact (with low success rates and high levels of stigma and cost) when proactive measures might simply avert it, or “inoculate” one against it?55 As of 2010, the U.S. Army declared “prevention” the preferred method of dealing with PTSD.56 This is the logic of the Comprehensive Soldier Fitness Program, created by the father of positive psychology, Martin Seligman. The program is “comprehensive” in that the Department of Defense’s Combat and Operation Stress Control program has invested massive resources in resilience training, requiring all 1.2 million soldiers to complete an online assessment module, and training drill sergeants as “ ‘master resilience’ trainers such that they can instill resilience in recruits in basic training.”57 This approach is believed to ensure the greatest chance of “post-adversity growth, including self-confidence, enhanced leadership, personal strength, spiritual growth, and appreciation of life as a result of having experienced a traumatic event.”58 Lemons into lemonade. If the shift from a focus on long-term psychodynamic/group therapeutic support to a faith in short-term evidence-based, highly interventionist cures already deeply impacted the understanding of “recovery,” the turn to resilience serves to further entrench notions of individual responsibility for one’s mental health. Choose resilience, resist trauma, and benefit from the chance to “translate potential threats into rewarding challenges,” as Anthony Giddens famously described the neoliberal, autotelic subject.59 Trauma here is refigured through the lens of “empowerment” as a growth opportunity and route to self-actualization. In line with this ethos, “resilience” further depoliticizes the terrain of war suffering by tacitly positing (and in turn producing) a war-worn subject who rarely seeks systemic or structural change, but only individual internal transformation to better meet and “adapt to” the reality of a persistently uncertain world.60 Adaptability of this sort cannot entail fundamental transformation because resilience, as Sarah Bracke argues

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in her work on vulnerability and resistance, presumes the “coherence of the self prior to, during and after the shock.”61 A country at perma-war requires, morally and militarily, soldiers who “bounce back.” Finally, while resilience training programs deploy the language of “choice,” critics aptly show how a resilience framework for governing subjects of risk functions to manage “good choices” in a way that undermines genuine autonomy and self-determination: here is your choice—don’t get sick (to echo the contemporary healthcare debate noted in Chapter 1). Put differently, “The telos of tracing authorship of the world to individual choicemaking removes the freedom to make choices: every point of choice-making becomes a point of potential judgment, a point of explanation and a potential point of governance intervention.”62 Instead of choice functioning as a route to control, “choice” functions as a route to being controlled. We are, as Jennifer Denbow argues, “governed through choice” (even just the perception of it).63 In the words of psychologist Alan Kazdin, addressing the context of governing children, “Choice among humans increases the likelihood of compliance.” Crucially, Kazdin immediately goes on to note that “choice isn’t important, it’s the appearance of choice that’s important. Having real choice is not the issue . . . but having the feeling that you have a choice makes a difference.”64 Caught up in institutionalized logics of resilience, with their system-stabilizing nexus of choice and control, potential resistance is moved outside the frame of subjectivity. In other words, regimens of resilience effectively invisibilize resistance for good citizen-subjects.

Opting Out? In the context of birth and death under increasingly neoliberal value systems, which manifest in hyper-medicalized, technologized, and interventionist ways of treating major life processes, resistant subjects have found ways (through homebirth and hospice) to opt out of the dominant paradigm and challenge its fraught mantra of patient “choice and control.” How and where might we identify an impulse toward alternate path seeking in the context of the military-medical complex and its understanding and treatment of veterans with PTSD? After being subjected (generally by choice65) as a “soldier,” and subjected (generally not by choice) as a “patient,” does some other subjectivity emerge by way of the contestation of the demands attached to being “deserving subjects of care,” as Gallagher discusses, or “resilient subjects,” as

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Howell discusses? Can we read the rejection of sanctioned VA mental healthcare, and the pursuit of other forms of healing, in the spirit of Foucault’s account of “critique”: a resistance to being “governed like that and at that cost”? In recent years, increasing attention has been paid to avenues of recovery pursued outside standard VA treatment. As less popular forms of short-term, interventionist, cognitive-behavioral therapy have come to replace individual and group psychodynamic therapy, practices such as yoga and mindfulness meditation, nature-based experiential therapy, and experimentation with self-medicating through more natural substances like marijuana have gained traction. How do such therapies figure in relation to traditional VA approaches? As I asked in the previous chapters, when is the pursuit of care outside dominant institutional contexts the pursuit of care against institutional power structures, norms, and constraints, and the subject of care that gets interpellated and treated therein? There are plenty of literary and cinematic depictions of Vietnam vets, in particular, who checked out after returning from war, going off the grid literally or medically in a rejection of corporate militarism and the (mis)management of war trauma.66 The radical environmentalist and Vietnam Green Beret Doug Peacock weaves versions of this narrative into his many books about the healing effects of wild places in the American West. Peacock, the basis for Edward Abbey’s character Hayduke in The Monkey Wrench Gang, returned from seeing “too many dead children in Vietnam”67 to an extreme and repeat retreat to nature, driven out over and over through the years by “the absence of dialogue about the price of war, the unburied dead, civilians caught in the cross-fire, the refugees, the incinerated crews in destroyed vehicles.”68 Unable to stand crowds and loud noises to this day, Peacock has spent much of his life living outdoors among ancient ruins and grizzly bears, arguing for humility in our humanity and seeking insight from figures of “wild resistance” like the Seri Indians of Mexico. Peacock writes that “Vietnam was the crucible that forged my own militancy, identifying for me my real enemies and the real war, the one being waged against life on earth.”69 He recounts (and ritually honors every year) leaving My Lai the day the famed massacre took place, which he only learned about later. For years he was haunted by the fact that “so very few . . . spoke out or acted to try to stop the killing,” and he grappled with the question of what he would have done had he still been there.70 Peacock’s response to war trauma was in part to check out, for “the VA had labeled me a misfit, and I considered the society it represented a

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pathological nightmare to which no one should consider readjusting.”71 But he also worked to confront and reimagine PTSD through ancient rituals such as the bestowing of “death eyes,” which, in various mythologies, allows the transformed person to see reality with a clarity not available to the fully living. What Peacock saw, as he recounts thinking about it on the eve of the war in Iraq, was that “there are no heroes; in the wake of the new, clean, cold killing, the long-distance slaughter of modern push-button warfare, the warrior was gone forever and the butcher home to roost.”72 He has channeled this awakened citizen-subjectivity not by working as an antiwar activist, however, but by working with veterans to help them turn their good-citizen desire to protect the nation into activism on behalf of public lands. While refusing to accept the “patriotic bullshit about the war,” and urging veterans to “wrap themselves in wilderness” to heal from the senseless rage of combat, he also mobilizes the subjectivity and training of the soldier—the passion for country, the willingness to die for the right cause, the ability to need very little and withstand deprivation, the fitness for collective life—into a war of resistance: to the raping and pillaging of the land through corporate industrialism and agriculture, to conquest, greed, and the “deadly trail of Manifest Destiny.”73 Peacock’s response to his “total social and industrial impairment” after Vietnam was to conclude, “We live in two different worlds: the so-called mainstream, as represented by the U.S. Department of Veterans Affairs, and my own, culturally skewed toward the wild.”74 The critical and resistant impulse embodied by Peacock and other rebel vets depicted in popular culture, however, bears little resemblance to the dominant story that emerges from the literature addressing the contemporary pursuit of alternative sites for healing. Today, leaving the clinic appears not to represent a desire to break with the military or the VA, but rather seems like a consumer preference by veterans for more choices of treatment (including forms of “self-help”). And the openness to incorporating such treatments suggests a recognition by the VA that the dominant treatment approaches are costly and inadequate. The shift I am identifying here may partly reflect the fact that we now have an all-volunteer service, not a draft. Veterans today may be more likely to at least tacitly endorse what the military stands for and identify with the institution.75 Another reason may be that VA healthcare in general, if not the reigning therapeutic and pharmacological approaches to mental healthcare, is relatively popular with veterans and is a benefit most of them want to continue using.76 Finally, compared to the

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post-Vietnam era, public attention to and support for veterans’ mental health needs are higher today, and thus the VA seems more motivated to try whatever works to mitigate the suffering and suicides resulting from PTSD. Consider marijuana as an alternative therapy. There are many veterans who want to be able to use VA healthcare (including some mental healthcare) and possibly deploy again, yet reject many psychopharmaceutical medications because of their “zombie” effects.77 As one veteran described her experience on the drug cocktail prescribed by her VA doctor, “I felt like I couldn’t feel. I was just here. I was a gray blob. Just an outline of myself.”78 Against the backdrop of a changing legal landscape at the state level, medical marijuana could be a potential alternative. A 2017 article on the military news site Task and Purpose details at length one soldier’s attempt to work around the zero-drug-tolerance policy at his VA clinic, in a state where medical marijuana was legal for everyone except soldiers who might have to pee in a cup to get treatment in a federal facility.79 What stands out in this particular veteran’s account is how aspects of medicalization were mobilized to challenge the dominant treatment options. In particular, doctor–patient confidentiality was maneuvered to bracket drug test results (if not let the doctor prescribe medical cannabis), and the VA’s policy was interpreted to allow the modification of patient treatment plans in light of self-disclosed marijuana use (in states where medical marijuana is legal). What is also striking is how the framework of “evidence-based medicine” was mobilized to call for studies “proving” that medical marijuana is a safe and effective way to treat the symptoms of PTSD. While studies of marijuana’s effectiveness exist, the Task and Purpose article notes that “the only federally approved research into the effects of herb on PTSD has stagnated, with just 26 veterans enrolled out of the required 76 needed to be viable . . . and the hang-up stems from the VA’s refusal to recommend veteran patients for the study, due to the drug’s classification as Schedule 1.”80 Beyond the hesitation to recommend vets for the study, as one doctor and cannabis researcher noted, vets with PTSD can be distrustful and “don’t want to be in the system and be monitored by the government.”81 But this leads most vets who use cannabis to avoid the VA altogether, for fear of being drug-tested and losing their other benefits, or in extreme cases arrested and imprisoned by the very government they served. Pressure for change is mounting, brought by activist groups like the Weed for Warriors Project. Founded in 2014 and currently with twelve chapters across the country, the group describes itself as “a social justice lifestyle brand supporting holistic

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rehabilitation for veterans through community-based projects, proactive care advocacy, cannabis education and compassion.”82 Far from walking away from the VA and merely treating themselves, these activist groups lobby the VA to recognize and sanction marijuana as one treatment among others; to domesticate its use as medicine within the VA and remove barriers to access nationwide. Like medical marijuana, yoga has gained attention as an alternative treatment for PTSD, and again one that is increasingly being incorporated into VA mental healthcare. One story done by Public Radio International in 2013 even noted that “yoga classes are becoming not just commonplace, but in some rehabilitation programs mandatory.”83 While traditional yoga practice includes the “warrior” postures, it still might be hard to square yoga’s fundamentally nonviolent orientation with the military mindset. Speaking to this point, the co-founder of the Veterans Yoga Project, Dan Libby, clarifies that “the 12 week yoga training for treating vets with PTSD tries to strip all the new-agey stuff out.”84 Insofar as yoga is essentially about a kind of selfcontrol, pursued through mastering the breath to bring calm and focus, it is perhaps easier to see how a very despiritualized version dovetails with neoliberal self-help values like personal responsibility, choice and control, and resilience.85 Groups like Warriors at Ease, Meghan’s Foundation, and Yoga for Vets weave together medical, military, and meditative discourses to advocate for yoga as a practice of emotional and physiological stress reduction. As described by one Harvard researcher, funded by the Department of Defense’s Telemedicine & Advanced Technology Research Center, the breath becomes “the target” to zero in on.86 Yoga here does not figure as a site of resistance to norms of military-medicalization, but as a medical alternative that advocates seek to bring into the domain of the military, through a “trauma-sensitive, military-culture informed approach.”87 Like with medical marijuana, mere anecdotal accounts about its benefits, or embodied knowledge by those who practice yoga, are not sufficient for its full integration into military treatment regimens. Thus advocates like Libby argue for the necessity of studies to generate “hard science about why yoga . . . programs work,” for without data “returning troops won’t take the programs seriously.”88 Warriors at Ease explicitly describes its mission as being “to increase awareness about the power of yoga and meditation and educate a network of professionals qualified to share evidence-based practices” so as to support “health, resiliency, posttraumatic growth.”89

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A third area of alternative treatment for PTSD that has garnered attention in the past years is “nature-assisted therapy.”90 For some veterans, “nature” means “high risk community outdoor recreation,” which provides the opportunity for adventure, adrenaline, and something akin to the training, risk, and camaraderie familiar from combat. Academic studies of such “adventure therapy” examine their effectiveness in facilitating rapid bonds of trust between participants, which may foster openness and engagement in the healing part of the adventure.91 For others, in contrast, nature means a place of peace, quiet, and respite from dimensions of contemporary life that are jarring to many with PTSD. Whether through horseback riding, fishing, rock climbing and mountaineering, river running, gardening, or hiking, programs like Warriors and Quiet Waters, Project Rebirth, Sierra Club Military Outdoors, Outward Bound Veterans, Project Healing Waters, and Higher Ground aim to facilitate something of the experience Peacock has spent decades calling for: to get veterans outside, immersed in the wilderness. Wilderness, Peacock argues, is “still our best bet” as humans for psychic and physical survival. Peacock’s conviction aside, similar to the trend with marijuana and yoga, much of the commentary on wilderness healing has emphasized how, for wilderness therapy to work, “its supporters are going to have to get the military behind it.”92 To do this, one researcher reports, “The VA needs data showing it’s effective, safe, that it’s worth supporting.”93 As Stacy Bare, a veteran and director of the Sierra Club Military Outdoors puts it, “We know intuitively that outdoor recreation can provide a quantifiable mental health benefit . . . But for policy and for funders, we have to make sure that we have strong monitoring and evaluation behind it.”94 It bears mentioning that in a 2016 edited volume following a symposium he helped organize at the University of Utah, on wilderness as a site of war trauma recovery, Bare said, “Some of us were disappointed that a symposium was needed. Why is it, for example, that we have to quantify and qualify what we know in our hearts to be true and what history has shown to be true? Nature heals.”95 These forms of therapy—marijuana, yoga, and wilderness immersion— represent potential alternatives to the dominant treatment approaches of pill cocktails and highly interventionist short-term cognitive-behavioral or exposure therapy. Yet none of them can quite be figured as sites of resistance to or contestation of the mainstream institutional logic. This is true insofar as they are deeply bound up with both the imperative for evidence-based “proof of effectiveness” as the standard for military recognition and support

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of treatment, and with an ethos of self-help as a form of autonomy understood as control. The former investment bolsters military-medicalization (where “medical yoga” or “medical wilderness retreats” might come to join “medical marijuana” as recognized and sanctioned “treatments”). The latter indicates a desire to be personally responsible for healing through internal adaptation. These impulses are not exactly opposed, but neither are they quite consistent with each other. It is challenging, then, to interpret exactly what is expressed in choosing these alternative paths to healing, if they do not necessarily represent sites that challenge the military-medical system itself. All of these approaches to treating PTSD have generated forms of activism (described in one account as the political “side effects” of being unhappily subjected within particular treatment regimens, particularly as modes of treatment intermingle with experiences of war and suffering96). But these forms of activism are best captured by the idea of health citizenship—being effective agents within a system of power and knowledge that one hopes to inform or reform through participatory engagement, but not necessarily transform through systems-challenging praxis. Unlike with homebirth and hospice, yoga, marijuana, and nature may figure more as sites to which veterans opt in versus opt out, let  alone as dissenting “exits” from the clinic. Put differently, while there are critical subjectivities that seem to have been awakened here, they frequently remain rooted to aims of individual empowerment within the military-medical system, so the critique that emerges is largely pragmatic—“These treatments don’t work, and we don’t want to be subjected to them”; “These treatments work, and we want access to and coverage for them”—not a form of resistance to the medicalization of war trauma, to the clinic’s thin promises of choice and control, or to the destructive effects of war. In the Vietnam era, the commitment to long-term supportive counseling for veterans at least partly reflected dominant knowledges about how therapy “works” and about what PTSD “is.” But that commitment also likely reflects the fact that the war ended, and there was then a finite group of “Vietnam vets” to be treated, as a matter of national duty, over the course of their lifetime. Today, however, we confront the possibility that war (no longer “the” war) is potentially never-ending. So how does that specter change things? What does the forever war mean for veteran health citizenship, and what does it mean for practitioners in federally owned and funded clinics tasked with serving a perpetual stream (and occasional flood) of the traumatized? How

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much does the constrained critique of the medical-industrial complex follow from an investment in the military-industrial complex by an all-volunteer service of professional, perennially redeploying, soldiers? Put differently, as a question of citizenship training in contexts of extreme corporeal and psychic vulnerability, the soldier-as-patient seems to present a distinct subjectivity. For this subject, vulnerability may never be a virtue (or a source of strength, as it fosters humility-informed-relational-autonomy), because it is always a palpable reality.

Conclusion A complex matrix of questions and concerns converges within the ongoing debate about just what PTSD is. As discussed at the outset, PTSD was recognized as a distinct diagnosis only in 1980, after an alliance of Vietnam veterans and mental health professionals banded together and advocated for its medicalization. Securing the diagnosis was seen as progress: material resources were subsequently allocated for treatment, and a framework for self-understanding was made available to veterans who had lacked a vocabulary for narrating their postwar experiences.97 Over time, this resource allocation has become deeply entwined with patriotism and what it means to “support our troops.” In the context of our current wars, however, resources are increasingly scarce and the costs of treatment do not clearly correspond to benefits. Moreover, where medicalization was once believed to reduce the stigma of combat trauma’s effects, the pathologization of PTSD now, paradoxically, contributes to stigma as veterans become culturally encoded as noble, but also potentially damaged and volatile. The fear among many veterans is that, while we might say “Thank you for your service,” we won’t say “You’re hired.” Beyond this concern, as PTSD has been expanded with each version of the DSM since 1980, many veterans worry that it has lost its original connection to combat trauma. Some argue for reclaiming the older terminology of “battle fatigue” since, as a veteran quoted in one study put it, “anyone can get PTSD” now.98 Other critics argue that “PTSD pathologizes individuals instead of pathologizing the true toxin, war itself.”99 Whether with the goal of reducing stigma, conserving resources, or critiquing militarism, a heterogeneous coalition is now lobbying to “drop the D”—as in, remove the word “disorder” and talk only about post-traumatic stress. Maybe it’s an injury;

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maybe a short-term (or long-term) disability. Maybe the inevitable order of war. Maybe post-traumatic stress is a growth opportunity. Veterans with PTSD, as they are subjected within these overlapping power/ knowledge systems of military and medicine, encounter certain choices and kinds of control. They are solicited to make responsible “use” of their diagnosis, so as to recover from trauma. As the VA clinic has gotten increasingly medicalized, interventionist, and managerial, many veterans have sought forms of treatment outside (not necessarily against or in opposition to) the clinic, and forms of empowerment within (not in resistance to) the military. As a lens through which to consider the virtues of vulnerability, and particularly to reconceive humility and autonomy not as opposites but as humilityinformed-relational-autonomy, the context of post-combat PTSD treated within the VA mental health system proves potentially confounding. And yet, while this context differs appreciably from birth and death, the framework of a practical, conceptual, and political problem nonetheless maps easily and appropriately onto this site and the serious challenges it must address. As I merely gestured to in earlier chapters, perhaps humility-informedrelational-autonomy might be creatively personified as Hira—something of a forgotten goddess or matron saint of muddling on humbly and with dark humor in search of spaces bearing freedom in connection, despite and because of corporeal and psychic vulnerability. That’s how I like to imagine her, for that figure sustains me, at least, in times of trouble and trauma. And if we can go with this idea, just for a second, maybe we can imagine that it is time we bearers of the burdens of these wars, within and without, start holding out for a Hira, not a hero.

6 Ethical Sources of Political Strength Humility, Autonomy, and Systems-Challenging Praxis

Vulnerability and autonomy interact in complex ways. In this book I have explored how corporeal and psychic exposure and risk, as well as the loss and grief sometimes associated with it, can be undergone in a vitalizing way and produce us, perhaps paradoxically, as more capacious subjects. Risk, particularly when it comes in resisting dominant modes of power and knowledge and institutional solicitations to be particular kinds of good subjects, can lead us to be less afraid of the tragic in life, more delighting in the beautiful or absurd, willingly receptive to the care of others, and able to offer such in return. Such experiences may make us more attuned to how power works on and through bodies in a way that I have suggested is political, even when (and maybe especially when) the domain of interaction is one typically regarded as private or personal, such as healthcare. Through detailed explorations of three sites of such experience—giving birth, navigating dying, and seeking treatment for military PTSD—I have considered how encounters with bodily and psychic vulnerability in institutionalized medicine might awaken a kind of citizen-subjectivity in us. And I have invited the reader to imagine with me how such a subjectivity might lead us to more critically and generatively contend with other moments in life (and it turns out there are a lot of them!) when we find ourselves seeking autonomy amid constraint; aspiring and foiled and nevertheless persisting. Our declarations of “No!” or “So it must be!” will often feel futile in the face of consolidated social, political, or institutional power. And yet still, we can do something, and must. As the saying goes, there is no way out (of birth, death, illness, grief, or politics) but through. I say that undergoing risk and loss in this way may be positively transformative. But that is not guaranteed. Encounters with risk and loss may give rise to resentment—a myopic and corrosive response to the question “Why is this happening to me?” William Connolly has consistently drawn our attention to the ways that fragility—at the psychic, corporeal, community, and planetary levels—can manifest in the will to batten down the The Virtues of Vulnerability. Sara Rushing, Oxford University Press (2021). © Oxford University Press. DOI: 10.1093/oso/9780197516645.001.0001.

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hatches and secure mastery over self and, often, others as well. Calling for an ethos of generosity, Connolly explores how encounters with precarity might instead be met with existential affirmation, a response that is up to the task of countering at least some of our reflexive hubris.1 “Such an ethos,” he tells us, “bumps into politics as it invites relations of selective affinity and agonistic respect.”2 Judith Butler, too, as I noted in Chapter 1, has helped us think through the “we” that vulnerability to exposure and loss can forge— tenuous, but possibly in a generative and not destructive way. For both Connolly and Butler, the fact of loss and fragility opens up the opportunity to consider the relationship between ethics and politics; the question of what selves we are relationally constituted as, such that we bear up capaciously as individuals and as collectives when we encounter a world we seek to transform. We might characterize this relationship as going from the personal “Why is this happening to me?” to the political “It shouldn’t be this way!,” where the latter means something more like “This is unjust in general, not only for me, and must be changed!” Much of the recent scholarship on public mourning has similarly worked to sort through the conditions under which, historically, grief has been isolating and corrosive versus connecting and supportive of democratic agency.3 When does having our vulnerability laid bare function to orient us toward others and toward generative action aimed at something better; and when does it get stuck at private suffering, or inspire the narcissism of perpetual lamentation, or a response of violent suppression? As Bonnie Honig puts this concern, how might an orientation toward mortalism supplant an embrace of natalism? How, or under what conditions, might a focus on vulnerability, loss, and grief defer action?4 For Honig, as I discussed in Chapter 1, the figure of Antigone that she engages is politically productive because, in the face of loss, she does not lament but rather “quarrels” with the categories, imperatives, and power that she is confronted by.5 And these quarrels, while played out through an encounter between the individuals Antigone and Creon, exceed the interpersonal, bearing the public and political. Antigone is never merely vulnerable, though in her grief and rage and subjection and resistance she certainly is that. But Honig argues for seeing her act not in its singularity, not as a form of purist heroism, but as a crucial interruption of a certain logic imbricating life, death, bodies, risk, sovereignty, and power.6 Turning to Douglas Crimp’s work, which posits a productive relation between mourning and militancy, Honig counters Butler’s ethical anti-statism, which gets stuck in mortalist humanism, with

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Crimp’s persistent call “both for government to help and for it to get out of the way.”7 The former mode mobilizes a “post-political ethical universalism,” and thus errs too much on the side of mourning as opposed to militancy. The latter, in contrast, directly engages the state by demanding supportive conditions provided by the state. Such demands flow, I would argue, from a dimension of humility in recognition of the fact that individuals and groups like AIDS patients are caught up in a disease, in a historical moment, and in a medical-legal-policy-insurance nexus, none of which they can really “choose,” and all of which means they cannot enact their will-to-survival on their own. But the mode Crimp figures here also demands freedom from therefore being excessively governed by this entanglement with state and medical power, such that the entanglement must ultimately be in the service of patient self-definition and self-determination to whatever extent possible. Humility and autonomy. Put into the terms of the framework developed in this book, for rethinking the conceptual relationship between humility and autonomy, we might say that Honig reads Butler as perhaps too inclined to end at humility in her mortalist humanism, and not focused enough on the impulse toward relationally supported autonomy that makes humility vitalizing, or renders it an ethical source of political strength. Honig, I think, is holding out for Hira (more on this later in the chapter). Crimp’s analysis of ACT UP’s (AIDS Coalition to Unleash Power) activism is important for her in this quest. And particularly apropos of my investigations here, she highlights how the group members “turned themselves from patients to health citizens. They became unapologetically impatient.”8 Honig quotes Crimp in a footnote, arguing that “As anyone involved in the struggle against AIDS knows from horrendous experience, we cannot afford to leave anything up to the ‘experts.’ We must become our own experts.’ ”9 Yes. And yet, AIDS activism embodies the recognition that dependence on experts is often necessary (even inevitable), and—when doctors provide care with humility and in the service of relational autonomy—frequently meaningful and vitalizing, and not merely beneficial. In her critical juxtaposition of Butler and Crimp, Honig is focused on the forms of Arendtian action that arise from the politicized “we” that recognizes the necessity and empowerment of being “our own experts,” the sentiments that Crimp and ACT UP figure for her. My concern, however, has been to explore what is perhaps a preceding question:  how do experiences with birth, death, and illness, as we are solicited to undergo them within the

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dominant medicalized and managerial domain of the clinic, give rise to these sentiments themselves? How do we come to know in this way—to know both that our agency is attenuated, and our bodies render us dependent; and also that our agency is crucial, and our vulnerability can be a site of empowerment? In the medical domain, if we struggle against benevolent paternalism paired with neoliberal solicitations to a thin autonomy, and the dominant modes of treatment and choice making this patient subjectivity entails, we might feel like control can only be regained in becoming our own “experts.”10 And yet our expertise and the desire to take charge will not guarantee control over bodily precarity and sheer chance, or over how we are recognized and subjected as “patients,” deserving (or not) of certain kinds of care, trust, power, knowledge, or resources. Sometimes, for example, a baby comes out easily, and sometimes it doesn’t, regardless of what we want, how clearly we’ve articulated that, and how much we know about our own bodies. Thus, again, reliance on other experts is often inevitable. Under the right conditions, as I explored in Chapter 3, “relinquishing autonomy” can be empowering. But those conditions—care, trust, power, knowledge, material and psychic resources—are often not ones we can control in real time, as our bodies come into contact with institutions and imperatives that are already firmly established when we show up. Part of what I have argued in this book is that certain experiences of vulnerability within mainstream medical institutional treatment regimens can facilitate awakening to or coming to know this story about humility, autonomy, dependence, and the precarious conditions for empowerment amid fragility. To cite Connolly again, “it is partly through our vulnerabilities that we appreciate and respond to the suffering of others.”11 Honig invites us to consider when and how such bonds of mortalist affection tip the scales toward collective political action. I share her concern. What I have suggested, though, is that sometimes that knowledge does not shape up clearly until later, and the appreciation and response it motivates may attach to or animate totally different causes, hopes, or action. Maybe one becomes a PTSD advocate. But maybe, like Doug Peacock, whom I discussed in Chapter 5, she becomes a radical environmentalist whose “No!” is directed at resisting other forms of subjection, discipline, and injustice. And yes, maybe she never does anything. While at times Honig seems to recognize that vulnerability can give rise to resistance, she mostly finds it depoliticizing. In a 2013 interview, for example, she argued that

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A politics built on vulnerability will be centrally oriented not just to nonviolence, as many hope, but also or instead to security, welfare and care. Vulnerable people are not ones who mount the barricades, or put themselves at risk in the streets, or immerse themselves in communities that need help, or release confidential documents. So although it might be a good political move for people to have heightened connection with others in similar situations because of their shared sense of fragility, the risk is that they will also feel less empowered to act together with others and more inclined to be fearful and to avoid encountering others.12

Yet there are all sorts of examples of vulnerable people doing exactly these things. Even Arendt, whose conception of the political hinges on largely sequestering the private and merely personal, took bold and risky action at arguably her most vulnerable moment in escaping from the Gurs internment camp in France. In The Jew as Pariah, Arendt writes of the “violent courage of life” that grew out of her experience at Gurs, including a discussion of possible group suicide as a way to rebuke the French for interning Jews. It is hard not to read these events and reflections as connected to an expanding political consciousness of resistance engendered by extreme psychic and bodily vulnerability, and the ethical response that exposure effected. So perhaps the issue is less a matter of whether the vulnerable can or will act, and more a matter of under what conditions they might double down in favor of their own security, and when they might take risks in the service of greater collective freedom and justice. A related question raised by engaging with Honig is this: what counts as political, as resistance, as “action”?13 How bold, intentional, reflective, and collective must an act be to meet her standards for action? While my investigations here take place against the backdrop of this conversation in political theory about grief and mourning as potential resources for (or obstacles to) democratic action, I have looked not to the polis past or present as my site of inquiry, but to the clinic. Arguing that experiences with mainstream medicine/hyper-medicalization are political, despite also being deeply personal and “private,” I  have examined what effects such experiences might have on our sense of ourselves as agents. I have framed this consideration in terms of an interest in citizen-subjectivity: under what conditions might a resentful or passive subjectivity emerge in the wake of journeys through the world of patienthood? Under what conditions might an empowered, resistant subjectivity take hold? Those conditions, I have shown,

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may fruitfully be unpacked in terms of the kind of humility and autonomy— the “virtues of vulnerability”—we cultivate and deploy relationally as we undergo these events. While not something I  have endeavored to demonstrate in empirical terms, I hope to have persuaded readers that we should take seriously the question of whether and how citizen-subjectivity is formed, trained, or rehearsed within seemingly nonpolitical domains where power and knowledge act on and through us at the site of the body. If one comes away from this book knowing more about how we give birth, die, and treat mental illness or disability in this country, and thus looks at these experiences differently—as political, as public questions (“public things,”14 not just “public health” questions) relevant for citizens not just patients—then I am satisfied. If one starts to think about orienting oneself in “Hospital Land USA” as a process of pairing humility with autonomy, and seeing “choice” as a double-edged sword, then good.15 My wager here is that, when we enter the world of the clinic, we fare best when we recognize both our dependence and often unprepared thrownness into this space, and the rightness of our quest for self-determination within the constraints we confront there. Finally, if, as one navigates the space of the clinic, one encounters solicitations to a patienthood one cannot abide, and makes the choice to seek other courses of treatment or care, my hope is that this book provides the seeds, at least, for thinking about when such a move might be recognized not just as a consumer “opt-out,” but as “exit.” Put differently, if “Hospital Land USA” is a site of governmentality, and thus for many people a site of contestation over identity and values, how and when do we consider leaving it to be a form of resistance, or protest? These terms—“opt-out” and “exit”—have come up in each of the previous body chapters. With regard to birth, I considered homebirth as a site of what the medical anthropologist Melissa Cheyney has called “systemschallenging praxis,” or resistance to norms of medicalization, particularly as they are imbricated with capitalism and motherhood under patriarchy. With regard to death and dying, I considered hospice (both a form and site of care) as a mode of challenging the implicit mandate to maximize life at all costs. With regard to veterans with PTSD, I considered recourse to nontraditional therapies—self-administered marijuana, yoga, and wilderness immersion— as potential contestations of the “gold-standard” and “evidence-based” psychopharmaceutical approach to “cure” that many veterans reject. By way of conclusion, then, let us examine these ideas of opt-out and exit directly.

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What is the difference between opting out and exiting? In his formative text, Albert O. Hirschman examines the history of treating exit and voice as economic and political acts, respectively (or market and non-market acts).16 Arguing that both economists and political scientists had overlooked the importance of the mechanism outside their domain, Hirschman sought to show that exit and voice worked in tandem. The interesting question for him was about their interplay: “Under what conditions will the exit option prevail over the voice option and vice versa?”17 Hirschman explores a number of different ways voice and exit can work: exit can be the dominant mode of reaction, and voice can represent the views only of those who stay; voice can be the first response, and exit can be a last resort when voice fails. The voice option can be costly for the individual actor, in terms of time, money, and energy spent addressing the powers that be with hopes of change. In the context of economic relationships, a customer must feel like she has some bargaining power, and will be heard. Voice can also be costly for the firm because, as Hirschman puts it, “in the age of protest” dissatisfied consumers can really “kick up a fuss.”18 Exit is less costly, so long as there are sufficient alternative goods and services for the consumer to choose. Hirschman provided a useful account of how exit and voice were distinct and related. But while he intended to show that exit itself was political and not merely economic, his choice of examples and focus on the “dissatisfied customer” make it hard to see how exit is not just opt-out, or what Mark Warren more recently characterized as “a silent act of private choice.”19 I will return to this point later in the chapter. But first, when the consumer is a patient, the firm is a clinic, and the service is healthcare, it seems like we have to fundamentally reconsider the basic question of costs and alternatives that Hirschman raises. Healthcare, in the United States at least, is primarily regarded as a commodity, and from that perspective the clinic is just a marketplace within which consumers operate according to their priorities, needs, and the alternative choices available to them. But the clinic is never really just a marketplace; it is a site that I have characterized as deeply political, but not exactly democratic; incredibly personal, but not exactly private; a realm of autonomy, but not exactly. Given the complexities of the clinic as a site, then, how is voice facilitated for patients, and to what degree is exit really a viable “choice”? To return to the example in Chapter 3, more than 98% of women in the United States deliver their babies in a hospital. To what extent does this represent an overwhelming endorsement of contemporary medical-institutional birth practices, and to

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what extent is an alternative site—home or birth center—not considered an option, either because of concerns about safety, availability, and convenience; because of insurance restrictions; or because it is simply never encountered as a possibility? Can we say, clearly, that 98% of women choose or “opt in” to hospital birth? To what extent does the rise of the birth plan represent a meaningful commitment to voice in childbirth, or the rise of the advance directive a meaningful commitment to voice in end-of-life care? What about offering verbal consent to treatment? What about the postpartum (or postmortem) customer satisfaction survey? As discussed in Chapter 5, one main complaint of veterans navigating the VA mental health complex is that lack of continuity in care means they have to tell and retell their story over time to many different mental health professionals, none of whom plays a true “story keeping” or meaning-making role.20 Speech itself is not “voice.” I have departed some already from Hirschman’s narrow definition of voice: “any attempt at all to change, rather than escape from, an objectionable state of affairs, whether through individual or collective petition to the management directly in charge, through appeal to a higher authority with the intention of forcing a change in management, or through various types of actions and protests, including those that are meant to mobilize public opinion.”21 Here, I have started talking about ways patients express desires about their care, not use voice to lobby hospital administration or insurance companies for change. But one main reason patients exit the space of the clinic is that they do not feel heard. It stands to reason that people who do not feel heard about their care may be less likely to employ voice as their mechanism for change, particularly when they are in the midst of a major corporeal or psychic event that has a time horizon (as birth and death do, though mental illness may not). In Why Voice Matters, Nick Couldry starts with Hirschman but expands voice beyond simply a mechanism of economic or political expression aimed at pressing for change to policies or practices.22 Couldry argues for understanding voice as a broader intersubjective process and a value, where the presence of the value ensures the commitment to the process. As a process, voice must be recognized as part of an “ongoing exchange of narratives,” where some of what is expressed relates to the “distinctive embodied position” of the speaker. Effective voice thus requires material and relational supports, as well as the ability to “give an account of oneself.”23 In other words, voice is inextricably linked to practices of recognition.24 The simultaneously

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individualizing and depersonalizing logic of neoliberalism does not value voice, Couldry argues, though it compulsively celebrates a thin version of it while persistently undermining conditions that support the thicker “process” of voice and validate its effectiveness. In healthcare, this tension is stark:  most providers learn somewhere along the way that listening to the patient is important. And yet time allocated for interacting with patients and giving them voice is extremely limited (according to some studies, about ten minutes for the standard OB/GYN appointment, and often less for end-of-life discussions with physicians). Moreover, hospitals now increasingly aim to standardize patient experiences through “scripting”—giving providers and staff targeted language to use across the domain to make sure patients repeatedly hear key words like “choice,” “privacy,” and “time.” As one medical/surgical manager noted, in an upbeat story on scripting, “We took the language right from the patient satisfaction surveys and scripted situations accordingly . . . I, along with the rest of my staff, was amazed to see the immediate and undeniable improvement in satisfaction scores after we had started scripting. And we’ve been able to sustain that improvement through continued scripting.”25 Here the already thin commitment to fostering patient voice, through the communicative mechanism of the patient satisfaction survey, is channeled not in the service of patient empowerment through changes to policies and practices, but rather enhanced public relations: marketing existing practices to new patients in the language the patient satisfaction survey has test-driven. Certainly, there are other ways to use voice for change in healthcare, and organized patient-activism or “health citizenship” groups (like ACT UP) tend to be savvy about deploying them. But individual patients, when faced with the sense of being effectively muted by the complex medical-legalpolicy-insurance nexus, might understandably react by either shutting up and accepting the treatment available, or leaving. As Mark Warren notes, though, even if an act of leaving is focused on getting one’s own needs met more than transforming the institution that is left, it can be read as exit and as empowering if the act reduces one’s vulnerability to institutional prerogatives and powers, thus serving the value of nondomination.26 Here Warren distinguishes exit from merely opting out, again described as a nonpolitical act of private choice (two equally available products, one of which is simply more attractive for practical reasons). Warren acknowledges that exit is a “low information” act when not connected to voice, but he argues that it can leave “communicative traces”

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(albeit ones that may get lost if the institution remains unaware of the exit, or aware but unclear as to the meaning of the act). Focusing more on the exiter than the firm, though, Warren argues that the act is political when it results from discontent, because it is itself a form of and claim on empowerment. To put this point into more Foucauldian language, drawing on Jennifer Denbow’s analysis, we might say that the value of the act as exit, or a kind of counter-conduct, is its potential to unmask or denaturalize the power relations and norms of the clinic, and to destabilize the discourse of “choice” by making unsanctioned choices.27 Going beyond Warren’s point, I want to suggest that when leaving is an exit, there is another communicative dimension we might usefully consider: what the exiter says to herself. In this sense, exit is not a silent act, but something of a “No way” or “Not THAT” or “I’m out of here!” It may be this communication of the exiter with herself (and others, outside the institution) that constitutes exit as a site of political awakening; an acknowledgment of one’s refusal to be governed like that, by those people, for that purpose, at that cost (all insights that are inflected differently when “those people” are one’s healthcare providers, and not the state or some other disciplinary apparatus). To invoke Honig’s language again, this moment of reckoning between the patient and himself may be the site at which lamentation gets politicized as leaving; frustration made active as flight. As Jennet Kirkpatrick explains, in The Virtues of Exit, democratic theory has traditionally characterized exit as a form of disengagement from politics, and so the “opposite of participation.”28 But while exiting the clinic for alternative sites of healthcare may indicate a refusal to participate in mainstream medicine’s mode of managerial hyper-medicalization, it is actually something like a “will to participation” that frequently is expressed as driving the exits I have considered. This is the expression of a desire for some degree of control through relationally supported autonomy, in contrast to control as choice made by the well-governed consumer-patient from a limited menu of approved treatment options. Like Warren, Kirkpatrick argues that to grasp this substantive dimension we must consider the meaning of exit—the “performative, aesthetic, and moral dimensions of the phenomenon”—and not just its consequences.29 To get at this question of meaning, Kirkpatrick parses out an array of exits, discussing “noisy,” “expressive,” “sacrificial,” “attached,” and “resistant” exits. Looking at Baldwin, Thoreau, and the slave narratives of Frederick Douglass, Harriet Jacobs, and William Wells, among other examples, Kirkpatrick

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considers how acts traditionally regarded as purely instrumental or selfinterested can be seen as much more, when read in terms of their expressive content and moral meaning. The chapter on Thoreau is particularly illuminating. In contrast to Arendt and others who frame Thoreau’s exit as merely an act of individual conscience, and a flight from citizenship, Kirkpatrick frames his exit as “resistant,” and thus as an act of citizenship.30 Moreover, because of the risks it entails and the losses potentially attendant to exiting, Thoreau’s leaving the polity is an act expressing virtues of citizenship more powerful than internal critique of the system. Citing Jack Turner’s analysis, Kirkpatrick examines how a “personal act of no-saying” comes to have political meaning when it gets expressed publicly as a performance of resistance and objection.31 Here again “voice” is affirmed as intricately linked to, not distinct from, exit. She writes, “[b]roadly understood as speech, writing, self-exhibition, and performance, voice enables the one-time act of exit to be replicated time and time again.”32 On this account, then, Thoreau’s withdrawal, about which he spoke and wrote much, was aimed at creating disruption from afar (if not actually that far, as we know). Because Kirkpatrick is focused on making the case for Thoreau’s exit as an act of political resistance, she is less interested in accounts that treat his flight as an opportunity for self-cultivation and the recuperation of authenticity (accounts that tend to emphasize his nature writings more than his political writings). But Shannon Mariotti’s account, in particular, strikes me as useful here.33 For Mariotti, the value of Thoreau’s exit is that it articulates a “No!” to the power and alienation of his moment in modernity. His withdrawal is not aimed at preserving his own purity as much as cultivating “the capacity to think critically and against convention,” or to “maintain a stance of critical antagonism” that is not immediately tethered to specific resolutions of the problems his exit exposes. Exit here expresses critique as well as the aspiration for nondomination; a negative aim, perhaps, but one with the potential to foster more genuine democracy because of, as I would describe it, the “citizen-subjectivity” it foments. Mariotti argues that Thoreau reminds us about a “forgotten mode of citizenship,” namely withdrawal motivated by reaction against constraints within which one effectively loses the ability to go against the grain, because of how they are solicited to be good subjects. Both Mariotti and Kirkpatrick suggest that Thoreau looms large as a figure in democratic theory not because of the substance of his critique (though important), but specifically because of the act of exiting that the critique motivated. He was, as he wanted to be, a “bad subject” from the perspective of

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the state.34 For Thoreau, exiting was both a form of soulcraft and an act of critical, aspirational statecraft; an ethical move that begot political strength. In considering exit from “Hospital Land USA” as something other than simply opting out of one healthcare service or provider in favor of another, I have been raising this question of what it takes to be a good medical subject today, and what the act of leaving the site of the clinic might do, ethically and politically, to the patient who exits. What is the subjective, normative, and political force of what we might call (channeling Thoreau) “clinical disobedience”? I have suggested that under certain conditions something I have characterized as a “political awakening” may unfold in the process of coming to relate critically or agonistically to the context of “care.” Contexts of care are always also sites of potential contestation; however, that fact may not dawn on us until we are deeply embedded (often literally!) in them. The kinds of awakening and resistance I have in mind may unfold wholly within the clinical scene, as one comes to grasp and respond to the tension between being hailed as an autonomous choice-making consumer-patient while also being subject to demands for versions of humility as compliance with medical authority.35 But such awakenings may occur even more so through making the decision to leave the clinic, if only because that “choice” goes solidly against the dominant logic of the clinic, and is thus framed as risky and even irresponsible. In the spirit of Thoreau, I  have asked whether bad (medical) subjects might make good citizens, when the idea of citizenship includes an emancipatory aspiration and a “stance of critical antagonism” against institutionalized modes of being governed that support inadequate forms of agency. In this book, I  have explored how we are subjected as patients in the modern-day clinic, a space I  have characterized as reflecting overlapping value systems of benevolent paternalism and neoliberal agency as “choice” and personal responsibility. And I have considered when and how leaving the clinic, in search of more meaningfully participatory modes of birthing, dying, and ailing/healing, is a threshold experience of potential political awakening. This project might be taken as something of a wager—a profession of what Stephen White and William Connolly both characterize as a nontheistic “faith” of sorts—that undergoing experiences of bodily and psychic vulnerability can be politically generative, or function to spawn and sustain a critical “democratic bearing.” In his book by this name, White argues that democratic bearing has a “dual character,” both an ethos and a political tack. Among the “sources of the self ” that give rise to the ethos is what White calls a sense of “human dignity,”

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understood in terms of a deep and abiding commitment to autonomy and to the moral equality of each person’s voice. This commitment has the capacity to orient us to others with the generous and open bearing of an “attentive traveler-host”—one who listens conscientiously to the “embodied, vulnerable and mortal” other whose words I do not try to reduce to a justifiable demand, or domesticate and evaluate.36 White asks: what would motivate us to “embody such an ethos”? The answer: a sense of the meaning of being human, which is perhaps best summed up in terms of the mortal bond we share with other humans. But this mortalist humanist “bearing” toward others and ourselves is not yet a democratic bearing in the absence of a “political tack.” Here White takes up the critique of the ethical turn offered by Honig, which I engaged in Chapter 1 and at the outset of this chapter. As he sums up her point: “What is lacking in my portrait of an ethos is anything that fosters the ‘natality’ of an emergent political demand.”37 White thus raises two key questions: why would I adopt such an ethos, and what makes that ethos bear out in political action? White’s response to Honig is illuminating. He argues in part that Honig has set the bar of “politics” too high, and asks whether her “illustration of admirable political action moves us unintentionally toward a level of expectation that might end up looking excessively high for most citizens.”38 This question mirrors the one I asked above: what would count as politics or “action” for Honig? Does anything short of an Arendtian collectivity storming the proverbial barricades count? Insofar as White is interested in “what sort of action . . . would be adequate in order to declare that a democratic bearing is present,” the question of Honig’s political threshold matters to him.39 And he offers interesting analyses of a few key examples that show what it looks like when an ethical encounter fails to manifest in political action. White makes clear here that he is not guilty of the tendency that Ella Myers critiques in Worldly Ethics, namely collapsing ethics and politics, or treating ethical self-cultivation and interpersonal relations as themselves political actions. But in aiming to respond to Honig’s critique, I think White cedes the terms of the discussion too much. What he is really interested in, as I see it, is the question of the sources of imagination and motivation that move those who are not yet Arendtian actors (and may never be) to aspire to citizenship in the first place. Democratic bearing is largely dispositional—a way of being and seeing—that, theoretically, should manifest in democratic action when an opportunity arises. The “citizen” part of the “citizen self ” that White is interested in will be disclosed in practice. But in what practices, or actions,

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who can say in advance? So the normative force of White’s project seems less about helping citizens develop an inventory of possible things to be done, and more about thinking through the sources of citizen-subjectivity that make it likely that we will see opportunities for action, be moved to act, and be prepared to persevere when “politics” proves, again and again, how slow and inglorious and nevertheless essential the “labor and delivery” of new worlds will be. Some of that work will take “extremely courageous action,” as White summarizes what he thinks Honig calls for. And so, in addition to what generates a democratic bearing, we might consider how citizens cultivate courage and attunement to chances to use it. But much of the work of democratic world making requires not so much courage as indignation and endurance. The ethos I proffer in this project— humility-informed-relational-autonomy—thus aims at something less glorious than extreme courage, but perhaps more sustainable (and sustaining). In both rightly desiring radical world-making autonomous action, and rightly recognizing that our thrownness into history, into bodies, and with others makes such a desire likely to fail, we might see Hira as a sort of forgotten goddess of nevertheless persisting. Her battle cry is not the “Alala!” of Greek heroes, or the “Dieu et mon droit!” (God and my right!) of medieval warriors, but a feisty, fleshy, fatigued, and infectious “What the fuck!?” Humility and autonomy, as I have worked to refigure them in this book (and to begin to “figure” them out through the emerging figure of Hira), are interdependent, mutually reinforcing, and empowering, not oppositions where one equates to passive obedience and the other to powerful sovereignty. Reconceived here, humility-informed-relational-autonomy represents an ethical disposition that can prepare us for politics, by making possible the practice of a certain citizen-subjectivity, and the claim on a certain conception of the human. One site at which we may find ourselves thrust into the opportunity to cultivate these dispositions is within (or in exiting from) the clinic—a supposedly apolitical domain of care oriented around what is best for the patient. As patients, we should want choice and control and we should also recognize the limits of that aspiration, both because bodies and minds and body-minds often have their own plans, and because the clinic is never actually an apolitical space where our desires regarding our care are the primary drivers of treatment. Vulnerability and exposure can result in disempowerment and resentment, but there are also virtues of vulnerability; traits that arise from exposure that are, I am suggesting, good for the person who embodies them.

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I have argued that humility-informed-relational-autonomy, here cultivated at the site of the body and the scene of the clinic, may give rise to a subjectivity that serves us well within or against the clinic, and in more traditionally recognized political contexts. Why? Because active citizenship in agonistic, pluralist democracies is, in many ways, an exercise in enduring and moving through failed sovereignty, or of vulnerability with and to others. Humility can inform the nevertheless persistent pursuit of an autonomy we know will remain largely aspirational. And healthcare can provide a site to practice citizenship; to flex those muscles, to develop a sensibility that might be brought back into politics proper, where we will need resources for skepticism in the face of power, and resistant individual and collective action in the face of being governed in ways we cannot abide. Somewhat like my approach here, White fleshes out (though without really attending to actual bodies) the question of democratic bearing by considering the effects on our consciousness of “depth” experiences of “fullness and dearth.” Here he has in mind “experience that is extraordinary and breaks in upon the familiar frames of meaning and reasoning that undergird everyday life, bringing with it some sort of significant solidification or transformation of my most basic commitments and anchors of identity.”40 Such experiences, as he describes them, are moments of insight, awakening, or, for some, rebirth. He asks, in the question that really figures his project as a whole, “what frame or constellation of meaning the citizens of late-modern, affluent democracies might need to bring to bear on such experiences in order to have at least some hope of enhancing the ethical-political promise they carry and minimizing the deleterious effects.”41 For some people, vulnerability within relations of dependency in birth, death, and illness will not constitute depth experiences for them. But as the preceding chapters show, for many people these corporeal and psychic events, as they are formed within systems and relations of power and knowledge, will do work on their subjectivities, or their self, and not merely their bodies. Their values, identities, hopes, fears, desires, needs, and senses of the past and future will be marked, often profoundly, such that they become “undone” through the process. In Chapter 3 I addressed literal midwifery, but throughout this project I have suggested a kind of metaphorical meaning-making midwifery that ethically and politically attuned healthcare providers perform in attending to the undoing and redoing of selves. These are providers who see humility-informed-relational-autonomy as a relationship—as something both provider and patient can cultivate through

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their time together, when they have time to dedicate to the process, and recognize the value of doing so. This is an orienting function with the power to reframe how patients, and citizens, think about independence, informedness, consent, dissent, choice, control, failure, loss, and justice. The medical-legal-policy-insurance pressures that have forged modern managerial hyper-medicalization have moved “care” ever further away from this midwifery model. As I quoted the medical anthropologist and cancer survivor Lochlann Jain saying, in Chapter 1, “living in the cancer complex requires learning new forms of advocacy and masochism, learning insurance language and how to negotiate social security insurance, as well as learning a whole slew of unwritten codes for how to be a sick person.”42 Birth, death, and illness involve so many kinds of learning, including, often, the development of extensive institutional and medical lexicons. Here I have argued that we should see the clinic as a site of political learning, as well. When we find ourselves in genuinely mutual, collaborative, and trusting relationships of care, the lesson of humility-informed-relational-autonomy that we learn has the potential to produce us as citizen-patients with a subjectivity and skills that we can carry out of the clinic and back into the polity. At the site of the clinic, then, we have the chance—if we see it, value it, and are supported in it—to learn new vocabularies about and practices of empowerment and selfdetermination amid dependency and constraint; or, in short, about politics.

Notes Preface 1. J. Peter Euben, “The Politics of Nostalgia and Theories of Loss,” in Platonic Noise (Princeton, NJ: Princeton University Press, 2003), 87. 2. Judith Butler, Precarious Life: The Powers of Mourning and Violence (New York: Verso, 2004), 21. 3. Lauren Berlant, Cruel Optimism (Durham, NC:  Duke University Press, 2011). On being a stable self, see Patchen Markell, Bound by Recognition (Princeton, NJ:  Princeton University Press, 2003), discussing the error of the ideal of recognition, namely the requirement that we be who we are—that the price of recognition is our past, present, and future selves aligning. In a similar vein, Butler fleshes out at length in both Precarious Life and Giving an Account of Oneself (New York: Fordham University Press, 2005) the violence of the question “Who are you?” Like Markell, her concern is the injustice of making stable or legible identity the prerequisite for any encounter, such that one must know who or what the other person is in order to know what treatment they deserve. On death time see Denise Riley, Time Lived, Without Its Flow (London: Capsule Editions, 2012), which discusses the “a-temporality” of time after the loss of a loved one; what Riley describe as “this sensation of having been lifted clean out of habitual time” (21). 4. It bears mentioning that “Fuck this” is, at least, a claim on agency and on life, as compared to “Fuck it,” which, to my mind at least, is an abandonment of this impulse. 5. Joan Cocks, On Sovereignty and Other Political Delusions (New  York:  Bloomsbury, 2014). 6. And this was my response just to the general question about his death; don’t even get me started about when people follow up with “How did he do it?” In case you haven’t thought about this before: unless a person shares this incredibly painful, profoundly intimate detail with you voluntarily, do not ask! Also, if you are not particularly close to a person, it’s probably best not to inquire about whether they found “the body.” 7. Donna Haraway, Staying with the Trouble: Making Kin in the Chthulucene (Durham, NC: Duke University Press, 2016), 2. 8. But I also preferred not to have a baby with Down syndrome, a preference I never much questioned until reading Eli Clare’s moving book Brilliant Imperfection: Grappling with Cure (Durham, NC: Duke University Press, 2017). I come back to this book at various points ahead, particularly in Chapter 5 on PTSD and conceptions of “recovery.”

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Chapter 1 1. Barbara Cruikshank, The Will to Empower: Democratic Citizens and Other Subjects (Ithaca, NY: Cornell University Press, 1999). 2. Judith Butler, “Rethinking Vulnerability and Resistance,” in Judith Butler, Zeynep Gambetti, and Leticia Sabsay, eds., Vulnerability in Resistance (Durham, NC: Duke University Press, 2016), 21. 3. For key accounts of the social versus medical model of disability (the latter taking disability itself—the physical condition—as the problem to be addressed, the former taking built environments, social norms, and beliefs about ability versus disability as the problems to be addressed), see Lennard J. Davis, Enforcing Normalcy:  Disability, Deafness and the Body (New  York:  Verso, 1995); Nancy J. Hirschmann and Beth Linker, eds., Civil Disabilities:  Citizenship, Membership, and Belonging (Philadelphia: University of Pennsylvania Press, 2015); Rosemarie Garland Thompson, Extraordinary Bodies:  Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997). For a crucial account of the “myth of control,” see Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996). 4. In Brilliant Imperfection:  Grappling with Cure (Durham, NC:  Duke University Press, 2017), Eli Clare returns repeatedly to this problem, noting how the focus on “cure” becomes a futuristic fantasy projection that displaces discussions of what could change in the here and now to make access and inclusion vastly better for people with disabilities. For example, instead of raising money for speculative research, we could “fund accessible buses, schools, classrooms, movie theaters, restrooms, housing, and workplaces” and support “campaigns to end bullying, employment discrimination, social isolation, and the ongoing institutionalizing of disabled people” (87). 5. In Caring Democracy: Markets, Equality, and Justice (New York: New York University Press, 2013), Joan Tronto offers a systematic critique of making economy and “justice,” not care, the foundation of democracy. Care is not just interpersonal, but political:  the polity must address the allocation of caring responsibilities, and also politics is fundamentally about caring for each other, democracy, and the world. For other classic texts see Carol Gilligan, In a Different Voice: Psychological Theory and Women’s Development (Cambridge, MA:  Harvard University Press, 1982); Virginia Held, Justice and Care: Essential Readings in Feminist Ethics (Boulder, CO: Westview Press, 1995); Eva F. Kittay, Love’s Labor: Essays on Women, Equality, and Dependency (New York: Routledge, 1999); Eva F. Kittay and Ellen K. Feder, eds., The Subject of Care:  Feminist Perspectives on Dependency (Lanham, MD:  Rowman & Littlefield Publishers, 2002); Nel Noddings, Caring: A Feminine Approach to Ethics and Moral Education (Berkeley: University of California Press, 1984); Sara Ruddick, Maternal Thinking: Towards a Politics of Peace (Boston: Beacon Press, 1995); Joan Tronto, Moral Boundaries: A Political Argument for an Ethic of Care (New York: Routledge, 1993). 6. In Citizen:  An American Lyric (Minneapolis, MN:  Graywolf Press, 2014), Claudia Rankine offers a beautiful, excruciating analysis of how Serena Williams’s body can

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never figure merely as the source of her excellence. In its blackness and femaleness, in its projected hypersexuality and asexuality, and in its sheer power, her body is always a site of vulnerability to derision, mocking, and critique. Rankine suggests that for black bodies no bodies are immune to meeting a hostile world, no matter how awesome and accomplished. For an excellent overview of feminist theories of embodiment, with particular attention to race and class, see Shatema Threadcraft, “Embodiment,” in Lisa Disch and Mary Hawkesworth, eds., The Oxford Handbook of Feminist Theory (New  York:  Oxford University Press, 2016), 207–226. . See also Patricia Hill Collins, Black Feminist Thought:  Knowledge, Consciousness, and the Politics of Empowerment (New  York:  Routledge, 1990); Kimberlé Crenshaw, “Mapping the Margins:  Intersectionality, Identity Politics, and Violence Against Women of Color,” Stanford Law Review 43, no. 6 (1991):  1241–1299, and Critical Race Theory:  The Key Writings that Formed the Movement (New  York:  New Press, 1996); Angela Y. Davis, Women, Race and Class (New York: Vintage, 1983); Audre Lorde, Sister/Outsider:  Essays and Speeches (Berkeley, CA:  Crossing Press, 2007); Shatema Threadcraft, Intimate Justice:  The Black Female Body and the Body Politic (New York: Oxford University Press, 2018). Audre Lorde offers particularly incisive and moving checks on masculinist disavowals in her poetry and in Sister/Outsider, where she writes, “The white fathers told us: I think, therefore I am. The Black mother within each of us—the poet—whispers in our dreams: I feel, therefore I can be free. Poetry coins the language to express and charter this revolutionary demand, the implementation of that freedom” (38). 7. On the assumptions and negations that allow feminist theory to posit the female body as having certain (potentially universalizing or reductive) parts and capacities, see Nancy J. Hirschmann, “Disability, Feminism and Intersectionality:  A Critical Approach,” Radical Philosophy Review 16, no. 2 (2013):  649–662. Hirschmann highlights feminist theory’s incomplete account of difference and the undecidability of the body. Disability studies, she argues, could productively complicate feminist analysis by providing a richer conception of intersectionality as what marks connections and similarities, and not just differences. 8. Iris Marion Young, On Female Body Experience: Throwing Like a Girl and Other Essays (New York: Oxford University Press, 2005), 16. For a recent return to Beauvoir and the crucial concept of the situation, see Lori Jo Marso, Politics with Beauvoir: Freedom in the Encounter (Durham, NC: Duke University Press, 2017). While I mean here that political theory has “traditionally” bracketed the body, Povinelli, in The Empire of Love (Durham, NC: Duke University Press, 2006), makes clear how much contemporary theory also brackets material embodiment to focus on discourse. Povinelli exposes the necessity of looking at both flesh and discourse, as they meet and mutually constitute each other. As Barbara Arneil and Nancy J. Hirschmann note in the introduction to Disability and Political Theory (New York: Cambridge University Press, 2016), the journal Political Theory has published (or had, as of 2016) only one article on disability, a form of embodiment that Arneil and Hirschmann argue for making central in feminist and political theory because it forces theory to deal with difference and resist abstraction.

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9. Samantha Frost, Biocultural Creatures: Toward a New Theory of the Human (Durham, NC: Duke University Press, 2016), 13. 10. Alexis de Toqueville, Democracy in America, volume II, section 2. 11. Wendy Simonds, Hospital Land USA:  Sociological Adventures in Medicalization (New York: Routledge, 2016). 12. Michael Winship, “The Trump GOP Prescription for America:  Don’t Get Sick,” Salon.com (March 21, 2017). At: http://www.salon.com/2017/03/21/the-trump-gopprescription-for-america-do-not-get-sick_partner/ 13. Paul Waldan, “What the Health-Care Debate Is Really About, in Two Remarkable Quotes,” The Week (May 3, 2017), quoting Alabama Representative Mo Brooks. At:  http://theweek.com/articles/696022/ what-healthcare-debate-really-about-2-remarkable-quotes 14. John Mackey, “The Whole Foods Alternative to ObamaCare,” Wall Street Journal (August 1, 2009). At: https://www.wsj.com/articles/SB1000142405297020425140457 4342170072865070 15. In subsequent chapters I examine how the rhetoric of choice often serves to mask the absence of choice. Amusingly, my university healthcare benefits program is called “Choices,” though there are few plans to pick from, and a number of “mandatory Choices.” 16. Judith Butler, Precarious Life: The Powers of Mourning and Violence (New York: Verso, 2004), 20. See, too, the work of queer disability theorist Alison Kafer, addressing how, in the creation or sustenance of any community, “we” is always “more promise than fact.” Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 13. For an excellent work on community forged in mourning, see Simon Stow, American Mourning (New  York:  Cambridge University Press, 2017) and David W. McIvor, Mourning in America (Ithaca, NY: Cornell University Press, 2016). 17. Kennan Ferguson, All in the Family:  On Community and Incommensurability (Durham, NC: Duke University Press, 2012), 112. 18. Ferguson, All in the Family. 19. Nancy J. Hirschmann, “Queer/Fear: Disability, Sexuality, and the Other,” Journal of Medical Humanities 34, no. 2 (2013): 139–147. 20. Christina Crosby offers a moving account of being thrust suddenly into the world of paralysis, in A Body Undone:  Living on After Great Pain (New  York:  New  York University Press, 2016). 21. Hirschmann, “Queer/Fear,” 141, citing Tobin Siebers, Disability Theory (Ann Arbor: University of Michigan Press, 2008), 26. 22. Nina Martin and Reneé Montagne, “U.S. Has the Worst Rate of Maternal Deaths in the Developed World,” NPR News (May 12, 2017). At: https://www.npr.org/2017/05/ 12/528098789/u-s-has-the-worst-rate-of-maternal-deaths-in-the-developed-world 23. The term “second-class citizenship” can describe hierarchies of legal status, but typically captures the idea of groups that, while having formal citizenship rights, lack full humanity within a society. 24. On how theories of citizenship typically overlook disabled people, see Hirschmann and Linker, Civil Disabilities, and Allison Carey, On the Margins of Citizenship: Intellectual

Notes

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26.

27. 28. 29.

30. 31. 32. 33. 34.

35. 36.

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Disability and Civil Rights in Twentieth-Century America (Philadelphia:  Temple University Press, 2009). Disability studies scholars have well documented how, even 30 years after the Americans with Disabilities Act, many public places remain inaccessible to non-normative bodies, including a key site of citizenship, the voting booth (in the 2016 election, over 80% of polling places were not fully accessible to disabled people). See the October 2017 U.S. Government Accountability Office report, “Voters with Disabilities.” At: https://www.gao.gov/assets/690/687556.pdf Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, A. M. Sheridan, trans. (New York: Taylor & Francis, 2003). For Foucault, “the clinic” represents both a physical space and a regime of medical knowledge constituting a distinct discourse and classificatory method and unleashing the medical “gaze.” He calls it “a new ‘carving up’ of things and the principle of their verbalization in a form which we have been accustomed to recognizing as the language of a ‘positive science’ ” (xviii). For an “organizational continuum” of health activism groups, see Kyra Marie Landzelius, “Introduction:  Patient Organization Movements and New Metamorphoses in Patienthood,” Social Science & Medicine 62 (2006): 529–537. Heather M. Zoller, “Health Activism:  Communication Theory and Activism for Social Change,” Communication Theory 15, no. 4 (2005): 341–364. Michel Foucault, “What Is Critique?” in Sylvère Lotringer and Lysa Hochroth, eds., The Politics of Truth (New York: Semiotext(e), 1997), 72. As Stephen K. White writes, “Many years ago, the idea of citizenship was perhaps the dullest, least interesting topic in the domain of political theory. Democratic citizens were considered first and foremost rights bearers; beyond that, they were just supposed to listen to political debate and vote in elections. Otherwise, citizenship was pretty much a status concept.” A Democratic Bearing: Admirable Citizens, Uneven Injustice, and Critical Theory (New York: Cambridge University Press, 2017), ix. Cruikshank, The Will to Empower; Wendy Brown, Undoing the Demos (Cambridge, MA: Zone Books, 2015). Brown, Undoing the Demos, 94. Patchen Markell, Bound by Recognition (Princeton, NJ: Princeton University Press, 2003), 188. Sheldon Wolin, Fugitive Democracy (Princeton, NJ:  Princeton University Press, 2016), 369. As Cruikshank notes, however, Wolin has tended to position the “citizen” against the “subject,” with the former being properly political, because oriented toward commonality, and the latter merely “prepolitical” because about particular identity. Wolin revised his position some in later texts, but Cruikshank says he maintained a standard for “the citizen” and for “democratic action” that ruled out the embodied experiences and subjectivities of many people, as well as any consideration of citizen-subjectivity itself. Will to Empower, 26–28. Charles T. Lee, Ingenious Citizenship:  Recrafting Democracy for Social Change (Durham, NC: Duke University Press, 2016), 3. Lee, Ingenious Citizenship, 5.

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37. S. Lochlann Jain, “On Writing About Illness: A Dialogue with S. Lochlann Jain and Jackie Stacey on Cancer, STS, and Cultural Studies,” Catalyst:  Feminism, Theory, Technoscience 1, no. 1 (2015): 4. See also S. Lochlann Jain, Malignant: How Cancer Becomes Us (Berkeley: University of California Press, 2013). 38. Lois McNay, The Misguided Search for the Political: Social Weightlessness in Radical Democratic Theory (Malden, MA: Polity Press, 2014), 19. 39. McNay, Misguided Search for the Political, 20. 40. McNay, Misguided Search for the Political, 28. 41. Claire E. Rasmussen, The Autonomous Animal:  Self-Governance and the Modern Subject (Minneapolis: University of Minnesota Press, 2011), xiv. Rasmussen works with the creative tensions between autonomy as law-making and autonomy as selfmaking. Drawing on Foucault, she posits autonomy as a “double-edged sword that on the one hand compels the self to exercise power over itself (and others) while at the same time provoking resistance to that power in selves that, using the compulsion to self-legislate, may always legislate in different ways” (18). 42. McNay, Misguided Search for the Political, 28. 43. McNay, Misguided Search for the Political, 16. 44. Joel Alden Schlosser, “A Poetics of American Citizenship:  Blackness, Injury, and Claudia Rankine’s Citizen,” Law, Culture and the Humanities, first published online (December 6, 2016), pp. 1–22. https://doi.org/10.1177/1743872116674918 45. Schlosser, “Poetics of American Citizenship,” 3. 46. Schlosser, “Poetics of American Citizenship,” 5. 47. Schlosser, “Poetics of American Citizenship,” 10. 48. Jack Turner, Awakening to Race: Individualism and Social Consciousness in America (Chicago: University of Chicago Press, 2012). 49. Turner, Awakening to Race, 9. 50. In one unanticipated post-2016 presidential election twist, certain women’s fashion magazines became (for a time) overtly political. Teen Vogue was particularly renowned in this way, with a weekly “Wokeletter” mailed to subscribers to “keep the resistance going.” Glamour, Vanity Fair, and Elle magazine were also noted for publishing more political content. Elle’s April 2017 issue focused at length on the political awakenings of women after 11/9, noting that “it had become clear that millions of women had been—to employ the overused, but oh-so-timely word—similarly ‘woke,’ and that postelection outrage had awakened a bona fide movement.” 51. “Standing Rock Awakens the World.” Image posted by Jody Paulson on December 5, 2016, at: http://jpaulson.blogspot.com/2016/12/standing-rock-awakens-world.html. This was also the title of a social justice panel at the 2017 South by Southwest (SXSW) music and culture festival in Austin, Texas. Image available at: http://schedule.sxsw. com/2017/events/PP96244 52. Bonnie Honig, Antigone, Interrupted (New  York:  Cambridge University Press, 2013), 33. 53. Honig, Antigone, Interrupted, 33 (emphasis mine). 54. Honig, Antigone, Interrupted, 34. 55. Honig, Antigone, Interrupted, 8.

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56. Honig, Antigone, Interrupted, 30. 57. Honig, Antigone, Interrupted, 34. 58. On this point, see Sara Rushing, “Preparing for Politics:  Judith Butler’s Ethical Dispositions,” Contemporary Political Theory 9, no. 3 (2010): 284–303. 59. In his book Political Awakenings: Conversations with History (New York: New Press, 2010), Harry Kreisler documents how seemingly minor aspects of embodied existence, small-scale insights gained from exposure to and understanding of other people, as well as major social and political events can serve as sites of political awakening. Women’s Studies has a tradition of talking about the “feminist click”—that moment at which one’s eyes were opened, or one’s consciousness was awakened, to the reality and importance of gender in a patriarchal world. See J. Courtney Sullivan and Courtney E. Martin, eds., Click: When We Knew We Were Feminists (New York: Seal Press, 2010). 60. See James C. Scott’s Domination and the Arts of Resistance: Hidden Transcripts (New Haven, CT: Yale University Press, 1992), noting that, “We will never be able to predict why one employee quits when insulted while another doesn’t, why one slave suffers a beating in silence while another strikes back, why one servant returns an insult and another turns away” (217–218). “The vagaries of temperament, personal circumstances, and individual socialization ensure that, under the same circumstances, one can anticipate a wide variety of responses to systematic subordination.” But, consistent with my approach here, Scott acknowledges that the move to react, respond, awaken, strike back, etc. is not a deliberative one, not the process of rational reflection, but more bodily. 61. Merrill Singer, “Beyond the Ivory Tower: Critical Praxis in Medical Anthropology,” Medical Anthropology Quarterly 9, no. 1 (1995): 80–106. 62. In All in the Family, Ferguson starts with political theory’s inattention to the family, and the central importance of family as “the site of community most intensely practiced by most people” (7). Where the family is addressed in political theory, he notes, it is often as abstraction or as a metaphor for state power. Where embodiment, including disability, are examined, they are often similarly abstracted, universalized, or watered down. Though Ferguson and I take up different questions, All in the Family stands out as a work of political theory that does precisely what I  aim to do, and confirms my claim that this approach is (still) uncommon. 63. Thomas Hobbes, On the Citizen, Richard Tuck and Michael Silverthorne, eds. (Cambridge, UK: Cambridge University Press, 1998), 102. 64. Julie E. Cooper, Secular Powers:  Humility in Modern Political Thought (Chicago: University of Chicago Press, 2013). 65. Emily Nacol, An Age of Risk: Politics and Economy in Early Modern Britain (Princeton, NJ: Princeton University Press, 2016), 3. 66. Nacol, Age of Risk, 3. 67. Corey Robin, Fear: The History of a Political Idea (New York: Oxford University Press, 2004), 40. 68. Robin, Fear, 41. 69. Robin, Fear, 48.

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70. Samantha Frost, Lessons from a Materialist Thinker: Hobbesian Reflections on Ethics and Politics (Stanford, CA: Stanford University Press, 2008), 7. 71. Anna Lowenhaupt Tsing, The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins (Princeton, NJ: Princeton University Press, 2015). Tsing points out, through travels with the Matsutake mushroom, that mushrooms require “contaminating relationality” (40). Where Hobbes attempts to manage vulnerability through contract, Tsing uses the mushroom to think about collaboration among beings (human or mushroom) who are never fully formed because they are “always changing shape in relation to their encounters and environments” (47). 72. Tsing, Mushroom at the End of the World, 28. 73. In Undoing the Demos, Brown performs the tension between knowing that neoliberalism is not really “a thing” (meaning it is differentiated, shifting, particular; with the devil always in the details), and experiencing neoliberalism’s reach into ever more domains of life as an unstoppable blob-like self-fulfilling prophecy. 74. I  also take seriously William Connolly’s point that “it is insufficient to examine a theory of neoliberalism generically,” and see my analysis of domains of healthcare as concrete sites at which to explore this broader cultural value system. See The Fragility of Things:  Self-Organizing Processes, Neoliberal Fantasies, and Democratic Activism (Durham, NC: Duke University Press, 2013), 13. 75. Simonds, Hospital Land USA, 11. 76. See Claire Rasmussen, “Fit to Be Tied:  Exercise Fads and Our Addiction to Autonomy” (in Autonomous Animal), examining “the practices of constructing the self through rigorous attention to the body” (138). 77. Clare, Brilliant Imperfection, 69. 78. For interesting analysis of how patienthood might be refigured within the “politics of vitality” characterizing contemporary health activism, see Landzelius, “Introduction:  Patient Organization Movements and New Metamorphoses in Patienthood.” Landzelius explores what gives rise to patienthood, and what ends patienthood:  health, death, or, interesting for my purposes here, “mutiny from patienthood”—a rejection of inclusion in this category, often as a challenge to biomedical knowledge and power and its pathologizing effects (534). 79. As I discuss in Chapter 4, medicalization is shifty and creates interesting modes of resistance that do not only take the form of “de-medicalization.” For example, many advocates of physician-assisted dying (PAD) want this option represented as a legitimate medical decision, not as opposed to or outside medicine, and thus non-medical. For a variety of reasons, advocates argue that PAD should be administered by doctors as part of their medical practice, even though facilitating death contradicts the logic of medicalization and the physician duty to maintain life, which doctors see as their ethical imperative. In this way, death is de-medicalized within the space of the clinic. 80. Gayle A. Sulik and Astrid Eich-Krohm, “No Longer a Patient: The Social Construction of the Medical Consumer,” Patients, Consumers and Civil Society: Advances in Medical Sociology 10 (2008): 3–28. 81. Sulik and Eich-Krohm point to messages circulating in mass media, representations of medical consumers in health promotion campaigns, public service announcements,

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85. 86. 87.

88. 89.

90.

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self-help groups, health activism groups, as well as through contact with personnel, both clerical and medical, in healthcare settings (6). Sulik and Eich-Krohm, “No Longer a Patient.” Wendy Brown, “Neoliberalism and the End of Liberal Democracy,” Theory & Event 7, no. 1 (2003); Denbow, Governed Through Choice. As Sulik and Eich-Krohm detail, “Once the characteristics of the medical consumer are integrated into one’s sense of self, many maintain that status when they are no longer in treatment” (21). Denbow, Governed Through Choice, 27. Sulik and Eich-Krohm, “No Longer a Patient,” 14. Of course, as Foucault reminds us, wherever there is power there is resistance—so many critical ways to interact with power! In The Misinterpellated Subject (Durham, NC: Duke University Press, 2017), James Martel notes this, arguing against our penchant for fetishizing romantic heroism and vilifying false consciousness. Martel provides a crucial reminder about the complexity of consciousness: it is always bound up with capitalism and ideology, and yet any tendency to contrast “the dupe” and the “awakened” is problematic. As Martel writes, “one doesn’t have to be a dupe to work with and accommodate a repressive system” (17). For my purposes here, Martel also importantly illuminates the question of subjection to patienthood explored ahead. What happens when the patient takes too seriously her subjection through a discourse of choice and control: can her response to the (misheard) call for “patient autonomy” create problems for the medical-institutional practices and personnel that were inviting her to be only a certain kind of health citizen? In other words, one avenue of resistance within contemporary healthcare may be the occasion to be misinterpellated as a health citizen, who, in responding to a call that was never exactly being made, comes to demand a certain kind of recognition of the being that she was never exactly intended to be! Rasmussen, Autonomous Animal, xv. The texts and thinkers I reference serve to help me address the problems I am interested in; thus, political theory here is a vehicle for my analysis but not necessarily the object of it. I do hope that political theorists will recognize this as a work of political theory, which makes a contribution to key discussions that we, as a field, are having today. But I  also acknowledge—enthusiastically!—the way this kind of problemdriven project may force an expansion of what we think political theory is and does, and what literatures, issues, sites, figures, and discourses we engage with in doing it. I  am particularly grateful for the rich ethnographic and qualitative work done on these topics, since I do not, myself, conduct interviews for this project, but many before me have done extensive work in this regard. In 2000, the World Health Organization ranked the United States 37th globally, and we’ve not made much progress since then on overall effectiveness, efficiency, and expense, among other indicators. A few key examples: Michel Foucault, The Birth of Biopolitics (New York: Picador/ Palgrave Macmillan, 2004), Society Must Be Defended (New York: Picador/Palgrave Macmillan, 2003), and Security, Territory, Population (New York: Picador/Palgrave

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Macmillan, 2007). Also Giorgio Agamben, Homo Sacer: Sovereign Power and Bare Life (Stanford, CA: Stanford University Press, 1998); Timothy Campbell and Adam Sitze, eds., Biopolitics:  A Reader (Durham, NC:  Duke University Press, 2013); Patricia Ticineto Clough and Craig Willse, eds., Beyond Biopolitics:  Essays on the Governance of Life and Death (Durham, NC: Duke University Press, 2011); Thomas Lemke, Biopolitics: An Advanced Introduction (New York: New York University Press, 2011); Vanessa Lemm and Miguel Vatter, Foucault, Biopolitics, and Neoliberalism (New  York:  Fordham University Press, 2014); Nikolas Rose, The Politics of Life Itself:  Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, NJ: Princeton University Press, 2006). 93. To quote Markell, in Bound by Recognition, “Acknowledgment prompts us to think about democratic power and action outside the frame of sovereignty. This might involve translating democracy’s egalitarian impulses into a new idiom in which risk, loss, and vulnerability are seen as constitutive features of political life rather than as burdens to be overcome once and for all” (188). 94. Melissa Cheyney, “Homebirth as Systems-Challenging Praxis,” Qualitative Health Research 18, no. 2 (2008): 254–267. 95. Interview in Juncture with Nick Pierce, 2013. At:  https://www.ippr.org/juncture/ juncture-interview-bonnie-honig

Chapter 2 1. David Hume, Enquiry Concerning the Principle of Morals, sec. IX (Bloomington, IN: Hackett Publishing, 1983). 2. Seyla Benhabib, Situating the Self:  Gender, Community and Postmodernism in Contemporary Ethics (New York: Routledge, 1992), 50, 155. 3. William Galston, Liberal Pluralism:  The Implications of Value Pluralism for Liberal Theory and Practice (New York: Cambridge University Press, 2002). 4. See, for a few classic examples:  Benhabib, Situating the Self; Marilyn Friedman, Autonomy, Gender, Politics (New  York:  Oxford University Press, 2003); Nancy J. Hirschmann, The Subject of Liberty: Toward a Feminist Theory of Freedom (Princeton, NJ:  Princeton University Press, 2003); Eva Feder Kittay, Love’s Labor:  Essays on Women, Equality and Dependency (New  York:  Routledge, 1999); Diana Tietjen Meyers, ed., Feminists Rethink the Self (Boulder, CO: Westview Press, 1996); Jennifer Nedelsky, “Reconceiving Autonomy:  Sources, Thoughts and Possibilities,” Yale Journal of Law & Feminism 1, no. 1 (1989): 7–36; Susan Moller Okin, Justice, Gender and the Family (New York: Basic Books, 1991); Iris Marion Young, Justice and the Politics of Difference (Princeton, NJ: Princeton University Press, 1990). 5. Mark Button, “Reading Emerson in Neoliberal Times: Contesting the Abandonment of Autonomy,” Political Theory 43, no. 3 (2015):  312–333; John Christman and Joel Anderson, eds., Autonomy and the Challenges of Liberalism (New  York: Cambridge University Press, 2009); Marilyn Friedman, “Relational Autonomy and

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7. 8. 9.

10. 11. 12. 13. 14. 15. 16.

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Independence,” in Andrea Veltman and Mark Piper, eds., Autonomy, Oppression, and Gender (New York: Oxford University Press, 2014), 42–60. In Secular Powers:  Humility in Modern Political Thought (Chicago:  University of Chicago Press, 2013), Julie Cooper rejects this story, arguing that those who tell of humility’s demise “treat humility like a concept with a fixed, invariant meaning, and a fixed, invariant social function” (9). Cooper’s genealogical approach aims to do the opposite. Nancy Snow, “Humility,” Journal of Value Inquiry 29 (1995): 203. Stephen Hare, “The Paradox of Moral Humility,” American Philosophical Quarterly 3, no. 2 (1996): 235. Don E. Davis, Joshua N. Hook, Everett L. Worthington Jr., et  al., “Relational Humility: Conceptualizing and Measuring Humility as a Personal Judgment,” Journal of Personality Assessment 93 (2011):  225–234. It bears mentioning that in 2017 Routledge published an extensive volume entitled Handbook of Humility:  Theory, Research, Applications (Everett L. Worthington Jr., Don E. Davis, Joshua N. Hook, eds.). The book seeks to make an important contribution to “the scientific understanding of humility,” but it is written almost entirely from within the framework of experimental social psychology. Of almost seventy-five contributors, few come from outside that field. The emphasis is definitely on the science of humility, but given the orientation of the editors the ethos of the book has strong spiritual, if not explicitly Christian, undertones, perhaps also reflecting funding sources (the Templeton Foundation and Fuller Theological Seminary). Mark Button, “‘A Monkish Kind of Virtue’?:  For and Against Humility,” Political Theory 33, no. 6 (2005): 840. Kari Konkola, “Have We Lost Humility?,” Humanitas 18, no. 1–2 (2005): 182. Joseph Kupfer, “The Moral Perspective of Humility,” Pacific Philosophical Quarterly 84 (2003): 265–266. Everett Worthington, “Humility:  The Quiet Virtue,” Journal of Psychology and Christianity 27 (2008): 270–273. Wilfred M. McClay, “Humility: Vice or Virtue,” In Character: A Journal of Everyday Virtues (May 4, 2010). At: http://incharacter.org/observation/humility-vice-or-virtue/ Indeed, works that have appeared between now and when I first began this project make the reports of humility’s demise seem greatly exaggerated. This political tension would not explain why humility fails to appear in contemporary Christian encyclopedic accounts of virtue. Certain conspicuous tendencies within contemporary American Christianity, however, may provide clues. Consider how prominent evangelical pastors embrace a version of the “prosperity doctrine,” wherein personal wealth becomes a sign of holiness and humility is regarded, if at all, as giving God credit for one’s riches. In The American Religion: The Emergence of the Post-Christian Nation (New  York:  Simon & Schuster, 1992), Harold Bloom characterizes the defining religious ethos of present-day American “revivalism” in terms of the deep and abiding belief that God loves each of us “on a personal and individual basis” (257). What Bloom calls “self-intoxication” may have implications

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17. 18. 19.

20. 21. 22.

23.

24.

25.

Notes for where and how the notion of humility fits into today’s overall Christian value structure. Konkola, “Have We Lost Humility?,” 182. Aristotle, Nicomachean Ethics, 1123b 10, 1123b 3. David O. Ross, trans., J. L. Ackrill and J. O. Urmson revised (New York: Oxford University Press, 1998). There is an energetic debate about the precise relationship between humility and pride. In Aristotle, megalopsychia (translated as magnanimity or great-souledness) is the relevant term and is arguably quite different in meaning and implication from the Christian conception of pride. See Howard Curzer, “Aristotle’s Much Maligned Megalopsychos,” Australasian Journal of Philosophy 69 (1991):  131–151; Howard Curzer, “A Great Philosopher’s Not So Great Account of Great Virtue:  Aristotle’s Treatment of ‘Greatness of Soul,’” Canadian Journal of Philosophy 20 (1990): 517–537; May Sim, Remastering Morals with Aristotle and Confucius (New York: Cambridge University Press, 2012); Mary Keys, “Humility and Greatness of Soul,” Perspectives on Political Science 37 (2008): 217–222. Konkola, “Have We Lost Humility?,” 183. Augustine, De Virginite, xxxi, as quoted by Aquinas in Summa Theologica II-II Q. 161, Art. 2 Obj. 2. Button, “ ‘A Monkish Kind of Virtue’?”; Heidi Giebel, “Humility and the Intellectual Life,” manuscript on file with author; Jennifer A. Herdt, “Christian Humility, Courtly Civility and the Code of the Streets,” Modern Theology 25 (2009): 541–561; Konkola, “Have We Lost Humility?.” Herdt, “Christian Humility,” 551. For a consideration of intellectual humility from a comparative religions perspective, see James L. Heft, Reuven Firestone, and Omid Safi, eds., Learned Ignorance:  Intellectual Humility Among Jews, Christians and Muslims (New York: Oxford University Press, 2011). One of the Desert Fathers of Egypt, Cassian was an ascetic monk who introduced the Eastern rules of monastic life to the West. His two main writings, the “Institutes” and the “Conferences,” address these rules, including the eight obstacles to perfection, the eighth of which is pride. The “Conferences,” in particular, emphasizes free will and agency in an attempt to counter what Cassian thought was an error of fatalism in his contemporary, Augustine, regarding predestination. “For no structure (so to speak) of virtue can possibly be raised in our soul unless first the foundations of true humility are laid in our heart” (“Institutes,” Ch. XXXII), and “when men remain in this condition, there is no doubt that this quiet and secure state of humility will follow, so that considering ourselves inferior to every one else we shall bear everything offered to us, even if it is hurtful, and saddening, and damaging—with the utmost patience, as if it came from those who are our superiors” (“Institutes,” Ch. XXXIII). (Catholic Encyclopedia online, “John Cassian,” 2017; at:  http://www.newadvent.org/cathen/ 03404a.htm) Benedict was an Italian monk and founder of the Western monastic tradition. Chapter 5 of the Rule of St. Benedict “prescribes prompt, cheerful, and absolute obedience to the superior in all things lawful, which obedience is called the first degree of humility.” Chapter 7 “treats of humility, which virtue is divided into twelve degrees

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27.

28.

29.

30.

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or steps in the ladder that leads to heaven. They are: (1) fear of God; (2) repression of self-will; (3) submission of the will to superiors; (4) obedience in hard and difficult matters; (5) confession of faults; (6) acknowledgment of one’s own worthlessness; (7) preference of others to self; (8) avoidance of singularity; (9) speaking only in due season; (10) stifling of unseemly laughter; (11) repression of pride; (12) exterior humility.” Full text of the Rule with commentary is at https://www.osb.org/our-roots/ the-rule/. Anselm was a Benedictine monk, the Archbishop of Canterbury, and a Doctor of the Church (one of the main purveyors of Catholic doctrine). As discussed by Aquinas in Summa Theologica II–II Q. 161, Anselm offers seven degrees of humility: (1) acknowledge oneself contemptible, (2) grieve for this, (3) confess it, (4) convince others of this (that is, to wish them to believe it), (5) bear patiently that this be said of us, (6) suffer oneself to be treated with contempt, (7) love being thus treated. Bernard was a Cistercian monk and a Doctor of the Church. He wrote “On the Steps of Humility and Pride,” which builds on the Rule of St. Benedict by explaining how humility is the path to truth, love, and wisdom. Francis founded the Order of Friars Minor, or the Franciscan monastic order. He wished to live a life that utterly imitated or conformed to that of Jesus. For Francis, Christ’s humility was exemplified through poverty and charity. He spoke of himself as vile and lowly, as recorded in The Little Flowers of St. Francis of Assisi, Part I, Ch. X, where he says that God’s “holy eyes have found among men no one more wicked, more imperfect, or a greater sinner than I am; and to accomplish the wonderful work which he intends to do, he has found no creature more vile than I am on earth; for which reason he has chosen me, to confound all strength, beauty, greatness, noble birth, and all the science of the world, that men may learn that every virtue and every good gift cometh from him.” Bonaventure was a Franciscan monk and Doctor of the Church. To resolve conflicts within the Friars, he was asked to write a new official biography of St. Francis, and also to explain and clarify the Rule of the Friars. Bonaventure was a close friend of Aquinas and wrote extensively on Augustine and Aristotle as well. Thought to embody humility, Bonaventure adamantly refused the honor of being appointed Archbishop of York by Father Clement IV and Cardinal by Pope Gregory X. For a recent consideration of humility within Franciscan theology and philosophy, see Ilia Delio, The Humility of God: A Franciscan Perspective (Cincinnati, OH: St. Anthony Messenger Press, 2005). Thomas Aquinas was a Catholic Dominican priest and philosopher, most renowned for bringing the traditions of Aristotle and scholasticism together. Summa Theologica II-II, Question 161: Humility. Following Augustine and in line with the Franciscan tradition, Scotus interpreted the first beatitude in the Sermon on the Mount, “poverty of spirit,” as humility. Alan B. Wolter, “Introduction,” in William A. Frank, ed., Duns Scotus on the Will and Morality (Washington, DC: Catholic University of America Press, 1997), 79. Ockham was a medieval English philosopher and theologian in the Franciscan tradition.

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33. Ruysbroeck was a Catholic Flemish mystic who championed the virtue of humility in The Spiritual Espousals. 34. See The Key of David (1619). 35. Konkola surveys early modern English “bestsellers” to determine the likely source of the literate population’s conception of humility. He begins with Thomas a’Kempis’s The Imitation of Christ (the first English translation appeared in 1502 and over 100,000 copies were sold by 1640)  and includes Richard Baxter’s A Christian Directory, Richard Allestree’s The Whole Duty of Man (1658), and Jeremy Taylor’s The Rule and Exercises of Holy Living (1650). Konkola argues that the “mass media” of the time were sermons, and that the prevailing moral thought can be captured by these most widely read of texts. The texts reveal that the “core ideas of Christianity continued with small changes through the Reformation” (183), including the belief that humility was a virtue of obedience and submission before God (a’Kempis) by “meek and indifferent” (Taylor) and self-abhorring, unworthy persons (Baxter). See also Robert Bolton’s Helpes to Humiliation (1603). 36. See Books XXVI and XXXV of The Theologia Germanica of Martin Luther, Susanna Winkworth, trans. (New York: Dover Publications, 2004). 37. Gerald Schlabach, “Augustine’s Hermeneutic of Humility: An Alternative to Moral Imperialism or Moral Relativism,” Journal of Religious Ethics 22 (Fall 1994): 300. 38. Thomas Aquinas, Summa Theologica, Question 161. 39. Giebel, “Humility and the Intellectual Life,” 4. 40. Machiavelli, The Discourses, Bernard Crick, ed., Leslie J. Walker, trans. (New York: Penguin Books, 1983), 278. 41. Baruch Spinoza, Ethics, James Gutmann, ed. (New York: Hafner Press, 1949), 179. 42. David Hume, An Enquiry Concerning Human Understanding, P. H. Nidditch, ed. (Oxford: Clarendon Press, 1990), 270. 43. John Stuart Mill, On Liberty (Indianapolis, IN: Hackett Publishing, 1978), 59. 44. Friedrich Nietzsche, On the Genealogy of Morals, Walter Kaufman, trans. (New York: Vintage Books, 1989), 117. See also Nietzsche, Beyond Good and Evil, section 260. 45. One notable exception is Noberto Bobbio’s In Praise of Meekness: Essays on Ethics and Politics (Cambridge, UK: Polity Press, 2000). Bobbio, however, treats “weak virtues,” including humility, as “inherent to private, insignificant or inconspicuous individuals” (26). In other words, humility is “not a political virtue” (28). 46. Some scholars suggest that humility is a foundational disposition, laying the psychological and ethical groundwork for the development of other democratic virtues. Others, however, believe that humility should be viewed as a corrective virtue, which protects against other vices; a dependent virtue, which one manifests secondarily in the presence of others when one has desirable traits to be humble about; or simply one desirable virtue among others in moral and political life. On dependent virtues, see Michael Slote, Morals From Motives (New York: Oxford University Press, 2001); on corrective virtues see Philippa Foot, Virtues and Vices (New York: Oxford University Press, 2003).

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47. Button, “ ‘A Monkish Kind of Virtue’?”; Keys, “Humility and Greatness of Soul”; Konkola, “Have We Lost Humility?”; Kupfer, “The Moral Perspective of Humility”; Snow, “Humility.” See also Sara Rushing, “Comparative Humilities:  Christian, Contemporary, and Confucian Conceptions of a Political Virtue,” Polity 45, no. 2 (April 2013): 198–222. 48. I  take this term from Stephen Hare’s “The Paradox of Moral Humility,” American Philosophical Quarterly 33 (April 1996): 235–241, where he uses the phrase “new humility” to mean non-overestimation of one’s achievements. In his words, “promising new attempts to give a more positive and central role to humility as a secular virtue reinterpret it as a quality of making accurate self-assessments” (235). Like many analytical philosophers writing on humility in the 1990s, Hare addresses the epistemological “paradox” attendant to humility: If you are morally superior to others, can you know this about yourself and still be humble? And, if you are humble, can you properly grasp your place in a merit hierarchy? 49. See Button, for example, drawing on St. Bernard in “A Monkish Kind of Virtue?”. 50. See Giebel, “Humility and Intellectual Life”; Keys, “Humility and Greatness of Soul”; Herdt, “Christian Humility.” Like Giebel, Keys, Worthington, and others, Herdt disputes the association between traditional Christian humility and self-denigration. She argues that both Augustine and Aquinas should be interpreted as saying that one can recognize one’s own abilities and virtues, but only through glorifying God and never oneself (553). 51. Isaiah 53:7. 52. Augustine, City of God, Book XIV, Chapter 12, in Augustine: Political Writings, Michael W. Tkacz and Douglas Kries, trans. (Indianapolis, IN: Hackett Publishing, 1994). 53. Keys, “Humility and Greatness of Soul,” 219. 54. Keys, “Humility and Greatness of Soul.” 55. Keys, “Humility and Greatness of Soul,” 221. 56. Keys, “Humility and Greatness of Soul,” 220. 57. Button, “ ‘A Monkish Kind of Virtue’?,” 849. 58. Button, “ ‘A Monkish Kind of Virtue’?,” 849. 59. Button, “ ‘A Monkish Kind of Virtue’?,” 850–851. 60. Button, “ ‘A Monkish Kind of Virtue’?,” 851. 61. In Democracy and Tradition (Princeton, NJ: Princeton University Press, 2004), Jeffrey Stout contrasts the Emersonian and Augustinian strands of American religiosity. He emphasizes the fundamental difference that original sin (or lack thereof) makes in these traditions. For the purpose of making common cause across theistic and nontheistic approaches to humility, Emerson seems a more promising representative of a Christian tradition than does St. Bernard. 62. Button, “ ‘A Monkish Kind of Virtue’?,” 851. 63. Button, “ ‘A Monkish Kind of Virtue’?,” 853. 64. Button, “ ‘A Monkish Kind of Virtue’?,” 852. 65. Button, “ ‘A Monkish Kind of Virtue’?,” 854. 66. Julie Juola Exline and Anna L. Geyer, “Perceptions of Humility: A Preliminary Study,” Self and Identity 3 (2004): 95.

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67. Exline and Geyer, “Perceptions of Humility,” 102. 68. See, for example, Daniel Statmen’s “Modesty, Pride and Realistic Self-Assessment,” Philosophical Quarterly 42 (1992): 420–438, which argues that “essentially modesty and humility share the same basic features.” Joseph Kupfer, in “The Moral Perspective of Humility,” concentrates “on people who excel because it seems that the greater one’s accomplishment, the more admirable his or her humility” (250). See also Aaron Ben Ze’ev, “The Virtue of Modesty,” American Philosophical Quarterly 30 (1993): 235–246; Julia Driver, “The Virtues of Ignorance,” in Uneasy Virtue (New  York:  Cambridge University Press, 2007), 16–41; Owen Flanagan, “Virtue and Ignorance,” Journal of Philosophy 87 (1990):  420–428. In October 2018, the Stanford Encyclopedia of Philosophy added an entry on “Modesty and Humility.” Though nominally acknowledging a distinction, the article basically treats them as one. Notably, the article begins, “The feature of modesty and humility that has most captivated philosophers is its elusive nature” (emphasis mine). “Modesty and Humility,” Nicolas Bommarito (October 31, 2018). At: https://plato.stanford.edu/entries/modesty-humility/ 69. Exline and Geyer, “Perceptions of Humility,” 108. 70. I do not explore methodological debates about comparative political theory here, nor whether Confucius, like Aristotle, is a “virtue ethicist.” On these points see Rushing, “Comparative Humilities.” See also Stephen C. Angle, “The Minimal Definition and Methodology of Comparative Philosophy:  A Report from a Conference,” Comparative Philosophy 1 (2010):  106–110; Stephen C. Angle and Michael Slote, eds., Virtue Ethics and Confucianism (New York: Routledge, 2015); Andrew March, “What Is Comparative Political Theory?” and Farah Godrej, “Response to ‘What Is Comparative Political Theory?,’” both in Review of Politics 71 (2009): 531–582. 71. There is no word in the Analects that can be neatly translated as humility. Different translations highlight the idea of humility to greater or lesser degrees. In Edward Slingerland’s edition, for example, the word humility appears in passages that D. C. Lau and Roger Ames and Henry Rosemont translate, variously, as modesty, deference, respect, and reverence. I work primarily with Slingerland’s translation (Indianapolis, IN: Hackett Publishing, 2003) not because it supports a theory of humility that other translations don’t—the theme is palpable regardless of translation—but because Slingerland provides extensive commentary that helps one engage more deeply with textual issues (particularly one who does not speak or read Classical Chinese!). 72. The gendered language here is intentional. Of Confucius’s “disciples” named in the text, all were men, and the text infrequently discusses women directly. For important considerations on this topic, see Li Chenyang, ed., The Sage and the Second Sex:  Confucianism, Ethics, and Gender (Peru, IL:  Open Court Publishing, 2000); Mathew Foust and Sor-hoon Tan, eds., Feminist Encounters with Confucius (Boston, MA: Brill, 2016); Li-Hsiang Lisa Rosenlee, Confucianism and Women: A Philosophical Interpretation (Albany: SUNY Press, 2007). 73. Aristotle, Nicomachean Ethics, Book II, Ch. 6. 74. As noted previously, Giebel adopts a similar approach in defending Christian humility. She treats pride not so much as a sin as a practical impediment to receiving God’s spiritual gifts.

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75. D. C. Lau translates ming as destiny in his edition of the Analects, and in Thinking Through Confucius (Albany: SUNY Press, 1987) Roger Ames and David Hall call this a “soft determinist” reading (212). 76. Button, “Reading Emerson in Neoliberal Times.” 77. Galston, Liberal Pluralism, 23. See also George Crowder, Liberalism and Value Pluralism (New York: Bloomsbury, 2002). 78. For an overview of rejections of autonomy in feminist theory, including on account of its being “idealized as a masculine achievement,” see “Autonomy and Social Relationships: Rethinking the Feminist Critique,” Chapter 4 in Marilyn Friedman’s Autonomy, Gender, Politics. Though not critiquing autonomy specifically, Judith Butler has recently characterized the “masculinist ideal” of the political subject as one that “establishes its agency by vanquishing its vulnerability.” See “Rethinking Vulnerability and Resistance” in Judith Butler, Zeynep Gambetti, and Leticia Sabsay, eds., Vulnerability in Resistance (Durham, NC: Duke University Press, 2016), 24. 79. Ironically, Rawls is among those Button and Crowder cite as having abandoned the normative principle of autonomy in his later work, in favor of greater accommodation of value pluralism. What feminist critics suggest, however, is that while Rawls may have ceased to give appreciable consideration to the normative aspiration of autonomy as central to a flourishing liberal society—he ceased to pay the topic much attention—he continued to presume the autonomous individual that feminists had found so troublesome. 80. See, for example:  Benhabib, Situating the Self; Fineman, The Autonomy Myth; Friedman, Autonomy, Gender, Politics; Hirschmann, The Subject of Liberty; Kittay, Love’s Labor; Diana T. Meyers, Self, Society and Personal Choice (New York: Columbia University Press, 1989); Nedelsky, “Reconceiving Autonomy”; Okin, Justice, Gender and the Family; Joan Tronto, Moral Boundaries: A Political Argument for an Ethic of Care (New York: Routledge, 1993); Joan Tronto, Caring Democracy: Markets, Equality, and Justice (New  York:  New  York University Press, 2013); Young, Justice and the Politics of Difference; Iris Marion Young, Inclusion and Democracy (New York: Oxford University Press, 2000). 81. In their key text, Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self (New York: Oxford University Press, 2000), Catriona Mackenzie and Natalie Stoljar identify “Reconceiving Autonomy” as the first articulation, to their knowledge, of a conception of relational autonomy from a feminist perspective. 82. Indeed, while I don’t dispute Button’s claim that autonomy underwent a benign neglect in liberal political theory, the notion that autonomy has been “abandoned” is much harder to sustain when looking at feminist theory. While feminist theory’s critique may have been partly responsible for liberal political theory’s shift in focus, feminists and feminist theory never had the luxury of rejecting autonomy, because bodily integrity and self-determination are foundational for feminist politics. 83. Nedelsky, “Reconceiving Autonomy,” 10. 84. Nedelsky, Law’s Relations:  A Relational Theory of Self, Autonomy, and Law (New York: Oxford University Press, 2011), 128. 85. Nedelsky, Law’s Relations, 134.

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86. Friedman, Autonomy, Gender, Politics, 87. 87. Nedelsky, Law’s Relations, 128; Friedman, “Relational Autonomy and Independence,” in Veltman and Piper, eds., Autonomy, Oppression, and Gender, 47. Like Nedelsky, Sharon Krause writes, in Freedom Beyond Sovereignty:  Reconstructing Liberal Individualism (Chicago:  University of Chicago Press, 2015), “It is true that liberal individualism has commonly been conceptualized in excessively sovereigntist terms both in the history of political philosophy and in American public consciousness” (13). 88. Lorraine Code, “Second Persons,” in What Can She Know? Feminist Theory and the Construction of Knowledge (Ithaca, NY: Cornell University Press, 1991), 73–74. 89. Mackenzie and Stoljar, “Introduction: Autonomy Refigured,” 5. 90. If Friedman’s point is that mainstream philosophical treatments of autonomy cannot be blamed for generating this caricature, it is also the case that they have not done much to combat it. As she acknowledges in Autonomy, Gender, Politics, “culture at large treats autonomy asocially and mainstream philosophers might be unwittingly contributing to this culturewide perspective” (97). 91. Veltman and Piper, “Introduction,” in Autonomy, Oppression and Gender, 4. 92. Linda Hirschman, “Homeward Bound,” American Prospect, November 1, 2005. 93. R. Claire Snyder-Hall, “Third-Wave Feminism and the Defense of ‘Choice,’” Perspectives on Politics 8, no. 1 (2010): 259. 94. Meyers, Self, Society, and Personal Choice, 76. 95. Meyers, Self, Society, and Personal Choice, 55. 96. Mackenzie and Stoljar, “Introduction: Autonomy Refigured,” 18. 97. I flag “authentic” self to bracket this question. Regardless of whether one assumes or refuses the idea of a deep and true identity, character, or personality, it seems fair to say that most people experience their desires and preferences as the expression of whomever they take their real self to be at any given point, and thus as deserving of respect by other people. See on this point John Christman, addressing “authenticity conditions” for autonomy, in The Politics of Persons: Individual Autonomy and Sociohistorical Selves (New York: Cambridge University Press, 2009). 98. Paul Benson, “Autonomy and Oppressive Socialization,” Social Theory and Practice 17, no. 3 (1991): 385–408. 99. In Fostering Autonomy (State College: Pennsylvania State University Press, 2012), Elizabeth Ben-Ishai notes that even within a substantive account of autonomy, the substance itself varies. She writes, “We cannot ‘fix’ the substance of autonomy in place; it is within a given context that the substance of autonomy must be worked out, negotiated, and challenged” (157). 100. Christman, “Saving Positive Freedom,” Political Theory 33, no. 1 (2005):  87. In Governed Through Choice: Autonomy, Technology, and the Politics of Reproduction (New  York:  New  York University Press, 2015), Jennifer Denbow embraces “autonomy,” but not the relational version examined here, arguing that it is overly focused on individual capacity building and lacks critical force. She draws on an alternative poststructuralist tradition of autonomy, which she argues prioritizes critique and transformation of force relations. I think, though, that she misses the

Notes

101.

102. 103. 104.

105. 106. 107.

108.

109. 110.

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critical and transformative dimension of substantive relational autonomy theories, when they entail a theory of justice and a critique of oppression and ideology. See Joel Anderson and Axel Honneth, “Autonomy, Vulnerability, Recognition, and Justice,” in Christman and Anderson, eds., Autonomy and the Challenges of Liberalism, 131. Friedman, Autonomy, Gender, Politics, 96. Andrea C. Westlund, “Rethinking Relational Autonomy,” Hypatia 24, no. 4 (2009): 26–49. Nancy J.  Hirschmann, “Autonomy? Or Freedom? A  Return to Psychoanalytic Theory,” in Veltman and Piper, eds., Autonomy, Oppression and Gender (62). Oddly, no one in this 2014 volume cites Sarah Conly’s 2012 book Against Autonomy: Justifying Coercive Paternalism (New York: Cambridge University Press). As an interesting point of contrast, Conly is “against autonomy” because sometimes people have to be forced to do what’s good for them, whereas Hirschmann is against autonomy because sometimes people have to be free to do what’s bad for them. Hirschmann, The Subject of Liberty, 36. Hirschmann, “Autonomy? Or Freedom?,” 63. Like Hirschmann, Sharon Krause sees “freedom” as the operative concept, but unlike Hirschmann she explicitly rejects the relational autonomy framework. In Freedom Beyond Sovereignty she writes, “The idea of relational autonomy generally refers to the intersubjective conditions that facilitate the development of autonomy as an inner faculty of the individual involving personal choice and control. . . . Insofar as it privileges intentional choice and treats autonomy as an inner psychological capacity, the relational autonomy literature stops short of the more radical view embodied in the notion of non-sovereign agency as a socially distributed phenomenon” (12). Though Hirschmann’s distinction here is also illuminating. We might ask:  How might the focus within medical contexts on autonomy, which can deftly and subtly function to carry normative values, displace a discussion of freedom, understood in Hirschmann’s sense as my choice to do what I want, even if it’s not good for me? For to be sure, such choices are not well tolerated within the risk-averse rationality of the medical-legal-policy-insurance nexus, and some courses of care are de facto or even de jure rendered impossible for patients to choose. See Chapter 4 for my analysis of debates about assisted dying. Hirschmann, “Autonomy? Or Freedom?,” 62. Nedelsky, “Relinquishing Control:  Autonomy, the Bodymind, and the Psyche,” Chapter 7 in Law’s Relations (279).

Chapter 3 1. Sharon Krause, Freedom Beyond Sovereignty:  Reconstructing Liberal Individualism (Chicago: University of Chicago Press, 2015), 3. 2. Jennifer Nedelsky, Law’s Relations:  A Relational Theory of Self, Autonomy, and Law (New York: Oxford University Press, 2011), 298.

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3. Rosemarie Garland-Thomson, Re-shaping, Re-thinking, Re-defining:  Feminist Disability Studies (Washington, DC: Center for Women Policy Studies, 2001). 4. Susan Bordo, Unbearable Weight (Berkeley:  University of California Press, 1993); Nancy Chodorow, The Reproduction of Mothering (Berkeley:  University of California Press, 1978); Kristin Luker, Abortion and the Politics of Motherhood (Berkeley: University of California Press, 1984); Angela McRobbie, “Feminism, the Family, and the New ‘Mediated’ Maternalism,” New Formations 80 & 81 (2013): 119– 137; Susan Moller Okin, Justice, Gender and the Family (New York: Basic Books, 1991); Sara Ruddick, Maternal Thinking: Toward a Politics of Peace (Boston: Beacon Press, 1995); Iris Marion Young, “Pregnant Embodiment:  Subjectivity and Alienation,” Journal of Medicine and Philosophy 9, no. 1 (1984): 45–62. 5. Hannah Arendt, The Human Condition (Chicago: University of Chicago Press, 1958). 6. David Archard and David Benatar, Procreation and Parenthood: The Ethics of Bearing and Rearing Children (New York: Oxford University Press, 2010); Brian Duff, The Parent as Citizen (Minneapolis: University of Minnesota Press, 2011); Jill Greenlee, The Political Consequences of Motherhood (Ann Arbor: University of Michigan Press, 2014); Norvin Richards, The Ethics of Parenthood (New  York:  Oxford University Press, 2010). 7. Wendy Simonds, Hospital Land USA (New York: Routledge, 2016); Nikolas Rose, The Politics of Life Itself (Princeton, NJ: Princeton University Press, 2007), 11. 8. Emily E. Peterson, Nicole L. Davis, David Goodman, et al., “Vital Signs: PregnancyRelated Deaths, United States, 2011–2015, and Strategies for Prevention, 13 States, 2013–2017,” Morbidity and Mortality Weekly Report 68, no. 18 (2019): 423–429. See also Nina Martin, ProPublica, and Renee Montagne, NPR News, “Nothing Prevents Black Women from Dying in Pregnancy and Childbirth,” ProPublica report released December 7, 2017, citing the Centers for Disease Control and Prevention statistic that black women are 243% more likely to die from pregnancy and childbirth-related factors. On Native American women, see Brianna Theobald, Reproduction on the Reservation: Pregnancy, Childbirth, and Colonialism in the Long Twentieth Century (Chapel Hill: University of North Carolina Press, 2019), and on Latino women in Puerto Rico, see Isabel M. Cordova, Pushing in Silence: Modernizing Puerto Rico and the Medicalization of Childbirth (Austin: University of Texas Press, 2017). 9. For one seminal text on this topic, see Dorothy E. Roberts, Killing the Black Body: Race, Reproduction, and the Meaning of Liberty (New York: Vintage Books, 1999). 10. Sarah Jacoby, “After Surviving Her Pregnancy Complications, Serena Williams Says ‘Class Shouldn’t Separate Health,’” Self (May 1, 2018). At: https://www.self.com/story/ serena-williams-class-health-pregnancy-complications 11. Julie Compton, “Trans Dads Tell Doctors:  You Can Be a Man and Have a Baby,” nbcnews.com (May 19, 2019). At:  https://www.nbcnews.com/feature/nbc-out/ trans-dads-tell-doctors-you-can-be-man-have-baby-n1006906 12. Mark Button, “Reading Emerson in Neoliberal Times,” Political Theory 43, no. 3 (2015): 30. 13. Susan Ayers, Andrew Eagle, and Helen Waring, “The Effects of Childbirth-Related PTSD on Women and Their Relationship: A Qualitative Study,” Psychology, Health

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and Medicine 11, no. 4 (2006):  389–398; Cheryl Tatano Beck, “Post-Traumatic Stress Disorder Due to Childbirth—The Aftermath,” Nursing Research 53, no. 4 (2004): 216–224; William R. Emerson, “Birth Trauma: The Psychological Effects of Obstetrical Interventions,” Journal of Prenatal and Perinatal Psychology & Health 13, no. 1 (1998):  11–44. Sarah Griffiths, “The Effect of Childbirth No One Talks About,” BBC Future, April 2019. At:  http://www.bbc.com/future/story/20190424the-hidden-trauma-of-childbirth; Jenny A. Parratt, “The Impact of Childbirth on Women’s Sense of Self: A Review of the Literature,” Australian Journal of Midwifery 15, no. 4 (2002): 10–16; Ndola Prata, Paula Tavrow, and Ushma Upadhyay, “Women’s Empowerment Related to Childbirth and Pregnancy: Introduction to Special Issue,” BMC Pregnancy and Childbirth, 17 (November 8, 2017); Jenny Hallam, Chris Howard, Abigail Locke, and Melissa Thomas, “Empowering Women Through the Positive Birth Movement,” Journal of Gender Studies 28, no. 3 (2019): 330–341. 14. Rose, The Politics of Life Itself, 29. 15. Midwives can be CNMs, with degrees in nursing but hospital-based training in midwifery, or they can be “direct entry” midwives who are certified but not trained as nurses. In this category are certified midwives and certified professional midwives. There are also traditional or “lay” midwives, who typically train through apprenticeships and forgo certification and licensure, usually to avoid entanglement with and regulation by the state, and often out of a philosophical belief that they are accountable to those they serve, and not others. In the United States, midwives attended most births until the 1930s, when obstetricians across the country went on the offensive, depicting midwives as untrained, incompetent, and even “unclean,” often as code for Jewish, black, or southern European immigrants. The business of birthing babies has a gendered and raced history, to say the least! In terms of the gender dynamics, obstetrics was originally a low-status medical specialty, made up almost entirely of white men. As it grew increasingly “medical” (meaning diagnostic, dominated by the language of pathology, and managed through technological and surgical interventions such as forceps and cesarean section for controlled extraction of the baby), it gained respect. As of 2018, 82% of doctors matching into obstetrics and gynecology (OB/GYN) residencies were women, and at that rate over the next decade that will amount to 66% of OB/GYNs (in 1975, only 16% of OB/ GYN residents were women). While one of the most diverse specialties, only about 18% of OB/GYNs are racial and ethnic minorities. See Saraswathi Vedam, Kathrin Stoll, Marian MacDorman, et  al., “Mapping the Integration of Midwives Across the United States:  Impact on Access, Equity, and Outcomes,” PLoS ONE 13, no. 2 (February 21, 2018): 1–20; LaTasha B. Craig, Samantha D. Buery-Joyner, Susan Bliss, et al., “To the Point: Gender Differences in the Obstetrics and Gynecology Clerkship,” American Journal of Obstetrics & Gynecology 219, no. 5 (November 2018):  430– 435; William F. Rayburn, “The Obstetrician-Gynecologist Workforce in the United States: Facts, Figures, and Implications, 2017” (Washington, DC: American College of Obstetricians and Gynecologists). At:  https://m.acog.org/~/media/BB3A762994 3642ADA47058D0BDCD1521.pdf. In the United States today, approximately 7.6% of licensed professional nurses and 9% of registered nurses are men. In 2010, the

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16. 17.

18. 19. 20.

21.

22. 23.

Notes American College of Nurse-Midwives reported that only 2% of CNMs were men. Nursing and midwifery also continue to have overwhelmingly white workforces. As a counter to this picture, though, see Eloise Greenfield (author) and Daniel Minter (illustrator), The Women Who Caught the Babies: A Story of African American Midwives (Carrboro, NC: Alazar Press, 2019). Wendy Simonds, Hospital Land USA:  Sociological Adventures in Medicalization (New York: Routledge, 2016). Wendy Brown, “American Nightmare:  Neoliberalism, Neoconservatism, and DeDemocratization,” Political Theory 34, no. 6 (2006): 690–714; Barbara Cruikshank, The Will to Empower: Democratic Citizens and Other Subjects (Ithaca, NY: Cornell University Press, 1999); Jodi Dean, Democracy and Other Neoliberal Fantasies:  Communicative Capitalism and Left Politics (Durham, NC:  Duke University Press, 2009); Jennifer Denbow, Governed Through Choice:  Autonomy, Technology, and the Politics of Reproduction (New  York:  New  York University Press, 2015); Michel Foucault, “Governmentality,” in Graham Burchell, Colin Gordon, and Peter Miller, eds., The Foucault Effect: Studies in Governmentality (Chicago: University of Chicago Press, 1991), 87–104; Michel Foucault, Security, Territory, Population: Lectures at the College de Frances, 1977–1978 (New York: Picador. 2009); Michel Foucault, The Birth of Biopolitics: Lectures at the College de Frances, 1978–1979 (New York: Picador, 2010); Angela McRobbie, “Top Girls? Young Women and the Post-feminist Sexual Contract,” Cultural Studies 21, no. 4–5 (2007): 718–737; Chantal Mouffe, The Democratic Paradox (London: Verso, 2000). Cruikshank, The Will to Empower, 41. Brown, “American Nightmare,” 693. There is a vast literature on risk management, discipline, and self-care under neoliberalism, particularly with regard to financial markets, social services, and healthcare. Ulrich Beck’s classic Risk Society: Towards a New Modernity (Thousand Oaks, CA:  Sage Publications, 1992) captures early thinking on this topic, as does Foucault’s work on governmentality and biopolitics. For useful conceptualizations of risk see Robert Castel, “From Dangerousness to Risk,” in Graham Burchell, Colin Gordon, and Peter Miller, eds., The Foucault Effect:  Studies in Governmentality (Chicago:  University of Chicago Press, 1991), 281–297; Anthony Giddens, “Risk and Responsibility,” Modern Law Review 62, no. 1 (1999): 1–10; Deborah Lupton, Risk (New  York:  Routledge, 2013); Jonathan Simon, “The Emergence of a Risk Society: Insurance, Law, and the State,” Socialist Review 95 (1987): 61–89. On pregnancy, in particular, see Lorna Weir, Pregnancy, Risk and Biopolitics: On the Threshold of the Living Subject (New York: Routledge, 2006). Marian F. MacDorman, T. J. Matthews, and Eugene Declercq, “Trends in Outof-Hospital Births in the United States, 1990–2012,” NCHS Data Brief No. 144 (2014): 1–8. Melissa Cheyney, “Homebirth as Systems-Challenging Praxis,” Qualitative Health Research 18, no. 2 (2008): 254–267. Charles Krauthammer, “No Pity for Parents Who Put Themselves First,” Chicago Tribune (May 27, 1996). At:  http://articles.chicagotribune.com/1996-05-27/news/ 9605270029_1_midwife-first-child-childbirth

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24. Jessica Mitford, The American Way of Birth (New York: Plume, 1993). 25. Denis J. Walsh, “Childbirth Embodiment:  Problematic Aspects of Current Understandings,” Sociology of Health and Illness 32, no. 3 (2010): 486–501. 26. Brown, “American Nightmare,” 692. 27. As Rose notes in Politics of Life Itself, “Nowhere have these been more telling than in the field of health, where patients are increasingly urged to become active and responsible consumers of medical services and products” (4), for example through employee wellness programs, or community resilience training. 28. As Weir notes in Pregnancy, Risk and Biopolitics, “Health in the modern period became a constituent and an objective of the politics, a responsibility of governance to improve for reasons political, economic and ethical” (8). 29. Rose, Politics of Life Itself, 3–4. 30. Mary G. Dietz, “Context is All: Feminism and Theories of Citizenship,” Daedalus 116, no. 4 (1987): 1–24; Ruth Lister, Citizenship: Feminist Perspectives (New York: New York University Press, 1997). 31. Jennifer Block, Pushed: The Painful Truth About Childbirth and Modern Maternity Care (Cambridge, MA:  Da Capo Press, 2007); Tina Cassidy, Birth:  The Surprising History of How We Are Born (New York: Grove Press, 2007); Randi Hutter Epstein, Get Me Out:  A History of Childbirth from the Garden of Eden to the Sperm Bank (New  York:  W. W.  Norton, 2010); Jennifer Margulis, The Business of Baby:  What Doctors Don’t Tell You, What Corporations Try to Sell You, and How to Put Your Pregnancy, Childbirth, and Baby Before Their Bottom Line (New York: Scribner, 2013); Theresa Morris, Cut it Out: The C-Section Epidemic in America (New York: New York University Press, 2013); Roanna Rosewood, Cut, Stapled, and Mended: When One Woman Reclaimed Her Body and Gave Birth on Her Own Terms After Cesarean (New York: Confluence Press, 2013). 32. Maria Hynes, “Reconceptualizing Resistance: Sociology and the Affective Dimension of Resistance,” British Journal of Sociology 64, no. 4 (2013): 567. 33. “The Crawl,” https://www.youtube.com/watch?v=MTn1v5TGK_w. Both Ingraham and Welch later described their bodies as “not listening” to them, as if their agency and their corporeality had parted ways. 34. Childbirth Connection, Cesarean Birth Trends in the United States:  1989–2015, March 2017 “Fact Sheet” (National Partnership for Women & Families). At: https:// www.nationalpartnership.org/ our- work/ resources/ health- care/ maternity/ cesarean-section-trends-1989-2014.pdf. See also Katherine Beckett, “Choosing Cesarean:  Feminism and the Politics of Childbirth in the United States,” Feminist Theory 6, no. 3 (2005): 251–275, 261. 35. For an interesting consideration of the extreme sports context see Michael Atkinson, “Triathlon, Suffering and Exciting Significance,” Leisure Studies 27 (2008): 165–180. One key point Atkinson makes, relevant here, is that the desire for self-actualizing experiences, particularly with regard to recreational endeavors like long-distance running (but also, perhaps, natural childbirth) have a class dimension that I  only touch on here. Self-knowledge and affirmation pursued through voluntary endurance of physical pain may reflect class and race privilege.

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36. Mirjam Lukasse, Siri Vangen, Pal Øian, and Berit Schei, “Childhood Abuse and Caesarean Section Among Primiparous Women in the Norwegian Mother and Child Cohort Study,” BJOG 17, no. 9 (2010): 1153–1157. 37. The idea of being “cured” of one’s pregnancy is, of course, pretty funny. The humor comes in part from the way “cure” does not fit this particular context. But I would argue that it also comes from the way pregnancy is figured as disease, and so there are ways in which the ideology of cure lurks beneath the surface for nine months, until one’s body is restored through the treatment of birth to its original state, figured as autonomous, reliable, and healthy again. In Chapter 5, drawing on Eli Clare’s Brilliant Imperfection: Grappling with Cure (Durham, NC: Duke University Press, 2017), I take up the ideology of cure in greater detail. 38. Monty Python, “Hospital Sketch,” 1983. https://www.youtube.com/ watch?v=NcHdF1eHhgc 39. Maria Zadoroznyj, “Social Class, Social Selves, and Social Control in Childbirth,” Sociology of Health & Illness 21, no. 3(1999): 267–289, 267. See also Paul Benson, “Autonomy and Oppressive Socialization,” Social Theory and Practice 17 (1991): 385– 408; Ellen Lazarus, “What Do Women Want?:  Issues of Choice, Control, and Class in Pregnancy and Childbirth,” Medical Anthropology Quarterly 8, no. 1 (1994): 25–46; Karin A. Martin, “Giving Birth like a Girl,” Gender & Society 17, no. 1 (2003): 54–72; Judith McAra-Couper, Marion Jones, and Liz Smythe, “CesareanSection, My Body, My Choice: The Construction of ‘Informed Choice’ in Relation to Intervention in Childbirth,” Feminism & Psychology 22, no. 1 (2011): 81–97; Kelly Oliver, “Motherhood, Sexuality, and Pregnant Embodiment:  Twenty-Five Years of Gestation,” Hypatia 25, no. 4 (2010): 760–777. 40. Lazarus, “What Do Women Want?,” 26. 41. Childbirth Connection was originally the Maternity Center Association. Founded in 1918, it is now the central program of the National Partnership for Women & Families. 42. Childbirth Connection, “How Do Childbearing Experiences Differ Across Racial and Ethnic Groups in the United States? A Listening to Mothers III Data Brief ” (2013). At:  http://transform.childbirthconnection.org/reports/listeningtomothers/raceethnicity/. See also Khiara M. Bridges, Reproducing Race: An Ethnography of Pregnancy as a Site of Racialization (Berkeley:  University of California Press, 2011); Julia Chinyere Oparah, Helen Arega, Dantia Hudson, Linda Jones, and Talita Oseguera, Battling Over Birth:  Black Women and the Maternal Health Care Crisis (Amarillo, TX: Praeclarus Press, 2017); Julia Chinyere Oparah and Alicia D. Bonaparte, eds., Birthing Justice:  Black Women, Pregnancy, and Childbirth (New  York:  Routledge, 2015); Loretta J. Ross and Rickie Solinger, Reproductive Justice:  An Introduction (Berkeley: University of California Press, 2017). See also, for a broader analysis, “The Black Female Body and the Body Politic,” Shatema Threadcraft’s Intimate Justice (New York: Oxford University Press, 2016). 43. Jane Henderson, Haiyan Gao, and Maggie Redshaw, “Experiencing Maternity Care: The Care Received and Perceptions of Women from Different Ethnic Groups,” BMC Pregnancy and Childbirth 13 (2013): 196.

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44. Joyce K. Edmonds, Revital Yehezkel, Xun Lia, and Tiffany A. Moore Simas, “Racial and Ethnic Differences in Primary, Unscheduled Cesarean Deliveries Among LowRisk Primiparous Women at an Academic Medical Center: A Retrospective Cohort Study,” BMC Pregnancy and Childbirth 13 (2013). 45. Lesley A. Tarasoff, “Experiences of Women with Physical Disabilities During the Perinatal Period:  A Review of the Literature and Recommendations to Improve Care,” Health Care for Women International 36 (2015): 88–107. See also Reem Malouf, Maggie Renshaw, Jennifer J.  Kurinczuk, et  al., “Systematic Review of Health Care Interventions to Improve Outcomes for Women with Disability and Their Family During Pregnancy, Birth and Postnatal Period,” BMC Pregnancy and Childbirth 14 (2014): 58; Monika Mitra, Lauren D. Smith, Suzanne C. Smeltzer, et al., “Barriers to Providing Maternity Care to Women with Physical Disabilities: Perspectives from Health Care Practitioners,” Disability Health Journal 10, no. 3 (2017):  445–450; Dympna Walsh-Gallagher, Marlene Sinclair, and Roy McConkey, “The Ambiguity of Disabled Women’s Experiences of Pregnancy, Childbirth and Motherhood:  A Phenomenological Understanding,” Midwifery 28, no. 2 (2012): 156–162. 46. Tarasoff, “Experiences of Women,” 92. 47. Renée Ann Cramer, Pregnant with the Stars: Watching and Wanting the Celebrity Baby Bump (Stanford, CA: Stanford University Press, 2015). Claudia Malacrida and Tiffany Boulton, “Women’s Perceptions of Childbirth ‘Choices’:  Competing Discourses of Motherhood, Sexuality, and Selflessness,” Gender & Society 26, no. 5 (2012): 748–772; Oliver, “Motherhood, Sexuality and Pregnant Embodiment.” 48. Michelle J. K. Osterman and Joyce A. Martin, “Recent Declines in Induction of Labor by Gestational Age,” National Center for Health Statistics Data Brief No. 155 (June 2014). At: https://www.cdc.gov/nchs/products/databriefs/db155.htm 49. Michelle J.  K. Osterman and Joyce A.  Martin, “Epidural and Spinal Anesthesia During Labor: 27-State Reporting Area, 2008,” Centers for Disease Control National Vital Statistics Report (2011). At:  http://www.cdc.gov/nchs/data/nvsr/nvsr59/ nvsr59_05.pdf. While there is nothing wrong with seeking pain relief during labor, use of epidural anesthesia correlates directly to rates of surgical or instrumentally assisted birth, with one UK study showing that women who get an epidural are almost six times more likely to have such a birth. Josephine M. Green and Helen A. Baston, “Feeling in Control During Labor: Concepts, Correlates, and Consequences,” Birth 30, no. 4 (2003): 235–247; Josephine M. Green and Helen A. Baston, “Have Women Become More Willing to Accept Obstetric Interventions and Does This Relate to Mode of Birth: Data from a Prospective Study,” Birth 34, no. 1 (2007): 6–13. 50. Fay Menacker and Brady E. Hamilton, “Recent Trends in Cesarean Delivery in the United States,” NCHS Data Brief No. 35 (2010), 1–8. The rate remains just under 33% today, though it varies by state, with Alaska having a state low of 22.6% and Louisiana a state high of 39.7% in 2010. 51. Childbirth Connection, “Why Does the U.S. Cesarean Rate Keep Going Up?” (June 2011). At: http://www.childbirthconnection.org/article.asp?ck=10456 52. See Kristin P. Tully and Helen L. Ball, “Misrecognition of Need: Women’s Experiences of and Explanations for Undergoing Cesarean Delivery,” Social Science & Medicine

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53.

54. 55.

56.

57.

Notes 85 (2013): 103–111, showing that, among other factors, “Misrecognition of cesarean need arises from perceptions of the value and risks of labor.” Also on the question of “need,” Rose writes, “Previously expert medical interventions were utilized in order to cure pathologies, to rectify generally accepted deviations from desirable functioning or to promote biopolitical strategies through lifestyle modifications. Now recipients of these interventions are consumers, making access choices on the basis of desires that can appear trivial, narcissistic, or irrational, shaped not by medical necessity but by market and consumer culture” (Politics of Life Itself, 20). The U.S. ranks fifth globally in maternal mortality rates, behind Mexico, Chile, Hungary, and Turkey (https:// www.washingtonpost.com/ news/ wonk/ wp/ 2015/ 11/ 18/ our- maternal- mortalityrate-is-a-national-embarrassment/?utm_term=.e8b953e28fd8). And a recent article in the Journal of the American Medical Association suggests that a 19% C-section rate may be optimal, as maternal and fetal mortality rates decline up to a 19% rate, and then level off (http://jamanetwork.com/journals/jama/fullarticle/2473490). For example, advanced maternal age; increasing rates of obesity and diabetes; the rise of infertility, increase of in vitro fertilization, and thus growing rates of higher-risk multiple births; the distinct U.S. medical malpractice landscape, high obstetrician malpractice insurance costs, and lawsuit avoidance via restrictive preemptive policies; the increasingly surgical emphasis of obstetrics training and decrease in familiarity with non-medical labor facilitation and pain management techniques; the trend toward general acceptance of surgery as safe and necessary when suggested by a medical authority. One recent article by healthcare economists who conducted an in-depth study of California and Texas found a significant connection between C-section rates and obstetrician financial incentives. See M. Marit Rehavi and Erin M. Johnson, “Physicians Treating Physicians: Information and Incentives in Childbirth,” American Economic Journal 8, no. 1 (2016):  115–141. And Weir’s Pregnancy, Risk and Biopolitics makes a compelling case for how the rise of perinatality and the focus on “the security of the fetus late in pregnancy” led to risk assessment approaches that produced the concept of “the high risk mother” and “comprised a policy of higher-intensity clinical care for women during pregnancy” (70), which I would characterize as an overall more interventionist approach. Morris, Cut it Out, 2013. American College of Obstetricians and Gynecologists, “Surgery and Patient Choice,” ACOG Committee Opinion Number 395 (2008). At:  http://www.acog. org/Resources_And_Publications/ Committee_ Opinions/Committee_on_Ethics/ Surgery_and_Patient_Choice.aspx Katherine Beckett, “Choosing Cesarean: Feminism and the Politics of Childbirth in the United States,” Feminist Theory 6, no. 3 (2005): 251–275; Donald Caton, What a Blessing She Had Chloroform: The Medical and Social Response to the Pain of Childbirth from 1800 to the Present (New Haven, CT: Yale University Press, 1999). Linda Carroll, “Hospital Heave-ho:  Homebirths Continue to Rise,” Today Health (2014). At: http://www.today.com/health/hospital-heave-ho-home-births-continuerise-2D79312738; Brenda Goodman, “Increase in Home Births Comes as Debate over Safety Intensifies,” WebMD Health News (May 20, 2011). At: http://www.webmd. com/baby/news/20110520/home-births-on-the-rise-in-the-us

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58. Helena Lindgren and Kerstin Erlandson, “Women’s Experiences of Empowerment in a Planned Home Birth:  A Swedish Population-based Study,” Birth 37, no. 4 (2010): 309–317. 59. Oliver, “Motherhood, Sexuality and Pregnant Embodiment,” 768, 770. 60. Green and Baston, “Feeling in Control During Labor,” 246. 61. B. Hally McCrea and Marion E. Wright, “Satisfaction in Childbirth and Perceptions of Personal Control in Pain Relief During Labour,” Journal of Advanced Nursing 29, no. 4 (1999): 877–884; Shaunette Meyer, “Control in Childbirth: A Concept Analysis and Synthesis,” Journal of Advanced Nursing 69, no. 1 (2013): 218–228; Emily E. Namey and Anne D. Lyerly, “The Meaning of ‘Control’ for Childbearing Women in the U.S.,” Social Science & Medicine 71, no. 4 (2010): 769–776; Joanne O’Hare and Anne Fallon, “Women’s Experience of Control in Labor and Childbirth,” British Journal of Midwifery 19, no. 3 (2011): 164–169. 62. O’Hare and Fallon, “Women’s Experience of Control,” 167. 63. Martin, “Giving Birth like a Girl,” 54. 64. Martin, “Giving Birth like a Girl,” 54. 65. Such insights are particularly interesting in light of recent studies showing that swearing triggers an emotional and physical response that can increase pain tolerance. See Emma Byrne, “The Science of Why Swearing Reduces Pain,” Wired (January 24, 2018). At: https:// www.wired.com/story/the-science-of-why-swearing- physically-reduces-pain/ 66. Susan Dodds, “Choice and Control in Feminist Bioethics,” in Catriona Mackenzie and Natalie Stoljar, eds., Relational Autonomy (New York: Oxford University Press, 2000), 213–235. 67. Dodds, “Choice and Control in Feminist Bioethics,” 213. 68. Brown, “American Nightmare,” 705. 69. As Weir writes in Pregnancy, Risk and Biopolitics, Foucault “suggested that security and discipline are mutually enforcing but analytically distinct. Security is a power/ knowledge apparatus constituted from the analysis of aleatory events in large populations.  .  .  . Discipline acts to optimize and correct the performance of individual bodies. Crosscutting security and discipline, clinical risk is, as I have shown, an amalgamation of incommensurable forms of reasoning assembled under the rubric of risk. In the process of moving from population to individual, clinical risk enters uncertainty” (188). 70. Thomas Hobbes, Leviathan, C. B. MacPherson, ed. (New  York:  Penguin Books, 1968), 262. 71. Rixa Ann Spencer Freeze, “Attitudes Towards Home Birth in the USA,” Expert Reviews Obstetrics & Gynecology 5, no. 3 (2010): 283. 72. Lazarus, “What Do Women Want?,” 35. Note: Anesthesiologists rarely observe easy births. When they are called in it is because an epidural is needed or for a C-section. 73. For example, though a majority of women surveyed for one study said they understood that they could decline most interventions during birth, and a majority said in advance that they desired to avoid most interventions, in fact only 10% of the women interviewed for the study actually refused any intervention suggested to them. See Eugene R. Declercq, Carol Sakala, Maureen P. Corry, and Sandra Applebaum,

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74.

75.

76. 77.

78.

79. 80. 81. 82. 83. 84. 85.

86.

87.

Notes “Listening to Mothers II:  Report of the Second National U.S. Survey of Women’s Childbearing Experiences,” Journal of Perinatal Education 16, no. 4 (2007): 13. Of course, autonomy can also be explicitly bounded. If, as per ACOG recommendations, one’s insurance company does not cover homebirth or one’s hospital does not allow a vaginal birth after a cesarean, then those choices are effectively foreclosed. Eugene R. Declercq, Carol Sakala, Maureen P. Corry, Sandra Applebaum, and Ariel Herrlich, Listening to Mothers III: Pregnancy and Birth (New York: Childbirth Connection, 2013), 14. Elizabeth Jones, “Women’s Experience of Control in Labour and Childbirth,” British Journal of Midwifery 19, no. 3 (2011): 164–169. As Nedelsky writes, in the chapter in Law’s Relations entitled “Relinquishing Control,” “I think one of the things that fosters autonomy is a sympathetic response to its limitations at any given point” (287). Michelle L. Mayer, “On Being a ‘Difficult’ Patient,” Health Affairs 27, no.5 (2008): 1416–1421. Lauren Plante, “Mommy, What Did You Do in the Industrial Revolution? Meditations on the Rising Cesarean Rate,” International Journal of Feminist Approaches to Bioethics 2, no. 1 (2009): 140–147. Melanie Tervalon and Jann Murray-Garcia, “Cultural Humility Versus Cultural Competence:  A Critical Distinction in Defining Physician Training Outcomes in Multicultural Education,” Journal of Health Care for the Poor and Underserved 9, no. 2 (1998): 117–125, 118. Tervalon and Murray-Garcia, “Cultural Humility Versus Cultural Competence,” 119. Onora O’Neill, Autonomy and Trust in Bioethics (Cambridge, UK:  Cambridge University Press, 2002), 3. Colin Gordon, Dead on Arrival:  The Politics of Health Care in Twentieth-Century America (Princeton, NJ: Princeton University Press, 2004). See also Lupton, Risk, 121. O’Neill, Autonomy and Trust in Bioethics, 27. Weir, Pregnancy, Risk and Biopolitics, 88. Virginia Adams O’Connell, Sharon Youcha, and Vincent Pellegrini, “Physician Burnout:  The Effect of Time Allotted for a Patient Visit on Physician Burnout among OB/GYN Physicians,” Journal of Medical Practice Management 24, no. 5 (2009): 300–314. O’Connell, “Physician Burnout.” See also Angie Stewart, “OB-GYNs Experience 3rd Highest Burnout Rate Among Physicians and Six Other Statistics,” in Becker’s ASC Review, discussing a Medscape study documenting 2016 burnout rates at 50%, with women OB-GYNS burning out at a 23% higher rate than men. At:  https://www. beckersasc.com/ benchmarking/ ob- gyns- experience- 3rd- highest- burnout- rateamong-physicians-and-6-other-statistics.html As quoted in Denis Walsh, “Childbirth Embodiment:  Problematic Aspects of Current Understandings,” Sociology of Health & Illness 32, no. 3 (2009):  486– 501:  “Contemporary childbirth is dominated by a variety of discourses—medicalisation, natural childbirth, androcentric models, woman-centered models and risk (Walsh 2007a). These tend to be most explicit at a theoretical level in academic

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papers and books (Davis-Floyd 2001, Martin 1987, Fahy and Hastie 2008, Reiger and Dempsey 2006). In practice, their edges are more blurred (van Teijlingen 2005), though almost universal hospital birth (95% in the United Kingdom, Health Commission 2008) arguably reflects the ubiquity of risk and medicalisation. There is evidence now from Canada (Reime et al. 2004), Italy (Monari et al. 2008) and Australia (Turner et al. 2008) that the beliefs of obstetricians and midwives differ regarding what constitutes a desirable birth. Midwives work across a range of settings and there is emerging evidence that even though they may be caring for low-risk women, they adapt their practices according to the context (Hunter 2003).” Emphasis mine; parenthetical citations in original quote. See also Lorna Weir’s overview of the ethos of midwifery as captured in “The Philosophy of Midwifery in Ontario” by the College of Midwives of Ontario: Weir writes, “Midwifery care is prescribed as ‘continuous, personalized, and non-authoritarian’. Midwives are subjectified as educators and counsellors, with clients interpellated as social, emotional, and cultural ‘as well as’ physical. This statement of professional ethos defines expertise as a collaborative achievement between caregiver and client. The expertise-subject relation in midwifery care positions the client as a locus of significant decision-making, which is modelled as ‘shared responsibility between the woman, her family (as defined by the woman and her caregivers), with the woman as primary’ ” (Pregnancy, Risk and Biopolitics, 98). 88. Grantly Dick-Read, Childbirth Without Fear (New  York:  Pinter & Martin, 2013); Pam England and Rob Horowitz, Birthing From Within: An Extraordinary Guide to Childbirth Preparation (New York: Partera Press, 1998); Ina May Gaskin, Ina May’s Guide to Childbirth (New York: Bantam Books, 2003). 89. Niccolo Machiavelli, The Prince, Robert M. Adams, ed. (New York: W. W. Norton, 1992), 69. 90. Button, “Reading Emerson in Neoliberal Times,” 318.

Chapter 4 1. Sherwin B. Nuland, How We Die: Reflections on Life’s Final Chapter (New York: Vintage, 1994), 259. 2. Atul Gawande, “Letting Go,” in Being Mortal: Illness, Medicine, and What Matters (New York: Metropolitan Books, 2014), 153–154. 3. Gawande, “Letting Go.” 4. As Vincent E. Barry discusses in Philosophical Thinking About Death and Dying (Boston:  Cengage, 2006), even knowing when someone is “dead” can be difficult, given different legal and medical definitions of death. Since 1968 the standard has been “whole brain death,” but other definitions include the traditional heart–lung definition, the higher-brain definition, and the brainstem definition (18). See also Joanne Lynn, “Living Long in Fragile Health:  The New Demographics Shape End of Life Care,” in Improving End-of-Life Care: Why Has It Been So Difficult? Hastings Center Special Report 35, no. 6 (2005): S14–S18), arguing that, “In a sense, the great success of modern medicine has been to transform acute causes of death to chronic illnesses” (14).

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5. Karla A. Erickson, How We Die Now:  Intimacy and the Work of Dying (Philadelphia: Temple University Press, 2013), 15. 6. Gawande, “Letting Go,” 165. 7. Gawande, “Letting Go,” 173. When I tell people that I am writing about death, they frequently offer anecdotes that affirm this message:  the eighty-five-year-old dying of cancer, who undergoes shoulder surgery because the doctor does not want to tell him that he will never play tennis again. But also, the eighty-five-year-old dying of cancer, who undergoes hip replacement surgery because, a nurse gently explains to her daughter, “we won’t be able to roll her over and care for her as she dies, if she has a broken hip.” 8. Ira Byock, “The Meaning and Value of Death,” Journal of Palliative Medicine 5, no. 2 (2002): 284. 9. Kenneth Fisher, In Defiance of Death:  Exposing the Real Costs of End-of-Life Care (Westport, CT: Praeger, 2008), 12. 10. Paul Glare, Kiran Virik, Mark Jones, Malcolm Hudson, et al., “A Systematic Review of Physicians’ Survival Predictions in Terminally Ill Cancer Patients,” British Medical Journal 327 (2003): 195; Elizabeth B. Lamont and Nicholas A. Christakis, “Complexities in Prognostication in Advanced Cancer: ‘To Help Them Live Their Lives the Way They Want to,’” Journal of the American Medical Association 290, no. 1 (2003): 98. Sixty-three percent of doctors overestimate survival time; only 17% underestimate. The average estimate was 530% too high. 11. Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, NJ: Princeton University Press, 2006), 27. Our socialization to this ethos happens at many sites, including spam email. If you have an email account with a weak spam filter, you have likely been bombarded at some point by repeat notifications about some form of “Miracle Cure!” Over and over, we are promised longer life, endless youth, and endless erections (which I think is a proxy for the promise of youth). As Rose writes, “This is an ethic in which the maximization of lifestyle, potential, health, and quality of life has become almost obligatory, and where negative judgments are directed toward those who will not, for whatever reason, adopt an active, informed, positive, and prudent relation to the future” (25). 12. Stephen Jay Gould, “The Median Isn’t the Message,” Discover Magazine (June 1985). 13. Harriet McBryde Johnson, “Unspeakable Conversations,” in Too Late to Die Young (New York: Picador, 2005), 201–228. 14. Physician-assisted dying involves a doctor helping a terminally ill patient in the final phase of disease self-administer a lethal dose of medication to end life. Euthanasia involves a physician (or other intimate caregiver) administering the medication, generally to an unconscious patient. This differs from the removal of life support, which ends oxygen and/or intravenous or tubal feeding but allows the body to shut down on its own. Euthanasia is not legal in the United States. 15. In Disciplining the Poor:  Neoliberal Paternalism and the Persistent Power of Race (Chicago:  University of Chicago Press, 2011) Sanford Schram, Joe Soss, and Richard Fording develop a concept of a single new rationality here—“neoliberal

Notes

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17.

18. 19.

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paternalism”—but I  mean to address what I  see as two overlapping, and in many ways opposed, rationalities. Regardless, I  share their interest in how the concept illuminates how “responsibilization” that seems to devolve decision making to the individual actually mobilizes the power of the state to highly manage and discipline certain populations, and to facilitate marketization desired by others. Phillipe Aries, Western Attitudes Toward Death (Baltimore, MD:  Johns Hopkins Press, 1975); Elizabeth Kübler-Ross, On Death and Dying (New  York:  Scribner, 1969). See also John F. Szabo, Death and Dying: An Annotated Bibliography of the Thanatological Literature (New York: Rowman & Littlefield, 2009). An April 29, 2017, Economist editorial makes essentially all the same points as Gawande, and as this vast literature, again. First and foremost among these points: how people say they want to die does not correspond to how they actually die—even when they theoretically have some say in the matter. Patients don’t like it. Doctors don’t like it. Families don’t like it. The points made by these many writers do not really change. The landscape has changed some in the last fifty years (more people die of chronic illness, because medical treatment allows them to live longer in poor health). But the same critical insights are offered over and over and over, which makes the question of why rampant medicalization continues an important one. The literature addressing this question just continues to grow. For example: Alex Broom, Dying: A Social Perspective on the End of Life (New York: Routledge, 2016); Katy Butler, Knocking on Heaven’s Door: The Path to a Better Way of Death (New York: Scribner, 2013); Ira Byock, The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (New York: Avery, 2012); Andrea Fontana and Jennifer Reid Keene, Death and Dying in America (Cambridge, UK: Polity, 2009); Glennys Howarth, Death and Dying: A Sociological Introduction (Cambridge, UK: Polity, 2007); Susan Jacoby, Never Say Die: The Myth and Marketing of the New Old Age (New York: Pantheon, 2011); Sharon Kaufman, And a Time to Die: How American Hospitals Shape the End of Life (New York: Scribner, 2005); Sharon Kaufman, Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line (Durham, NC: Duke University Press, 2015); Stephen Kiernan, Last Rights: Rescuing the End of Life from the Medical System (New York: St. Martins Griffin, 2006); Shai Lavi, The Modern Art of Dying: A History of Euthanasia in the United States (Princeton, NJ: Princeton University Press, 2007); Milton Lewis, Medicine and the Care of the Dying: A Modern History (New York: Oxford University Press, 2007); Ann Neumann, The Good Death: An Exploration of Dying in America (Boston: Beacon Press, 2016); Lawrence J. Schneiderman, Embracing Our Mortality: Hard Choices in the Age of Medical Miracles (New York: Oxford University Press, 2008); Fran Smith and Sheila Himmel, Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement (Berkeley, CA: Viva Editions, 2013). Margaret Gibson, “Death and Community,” in Steve Conway, ed., Governing Death and Loss: Empowerment, Involvement and Participation (New York: Oxford University Press, 2011), 19. Byock, “Meaning and Value of Death,” 284. In short, autonomy that is offered to/solicited from patients in a process I would characterize as one of subjection; one that claims merely to recognize patients as having

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21.

22.

23.

Notes autonomy, but in fact functions to produce them as the kind of medical consumers, the kinds of subjects, the system demands. A  few key examples:  Elisabeth Anker, Ugly Freedoms (manuscript in progress); Saidiya Hartman, Scenes of Subjection:  Terror, Slavery, and Self-Making in Nineteenth Century America (New  York:  Oxford University Press, 1997); Sharon Krause, Freedom Beyond Sovereignty:  Reconstructing Liberal Individualism (Chicago:  University of Chicago Press, 2015); Patchen Markell, Bound by Recognition (Princeton, NJ:  Princeton University Press, 2003); James Martel, Love Is a Sweet Chain: Desire, Autonomy and Friendship in Liberal Political Theory (New York: Routledge, 2001). Beverly Clack, “Constructing Death as a Form of Failure:  Addressing Mortality in a Neoliberal Age,” in Michael Cholbi, ed., Immortality and the Philosophy of Death (New  York:  Rowman & Littlefield, 2015), 115–134; Katherine E. Kenny, “The Biopolitics of Global Health: Life and Death in Neoliberal Times,” Journal of Sociology 51, no. 1 (2015): 9–27. Kenny writes, “Death is no longer a disease outcome, it is rendered a decision outcome; a decision outcome that the future-oriented, risk-minimizing economically maximizing rational actor should, obviously, avoid through self-optimizing practices of investing in one’s own health” (21). Of course, different deaths are “shameful” in different ways, and for different people. As the “Downton Abbey” example shows, though death is “the great equalizer” in that we all ultimately do it, it is frequently not neutral with regard to race, class, sexuality, or other social factors. Nor is our perception of which lives, and which deaths, matter. While I take long-terminal illness as the context for my analysis here, it bears mentioning that the “politics of death” likely calls to mind not the ICU or the hospice center, but police violence and Black Lives Matter, mass refugee exodus and images of dead Syrian children, or the persistently high suicide rate among veterans (a topic I take up in the next chapter). Indeed, dying slowly under mainstream medical care may seem to many people to be a privilege and luxury. We must still critically engage how such dying has shaped up. But we also must acknowledge that it is important to ask who the “we” is in the question of “how we die.” Francesco Adorno, “Power over Life, Politics of Death:  Forms of Resistance to Biopower in Foucault,” in Vanessa Lemm and Miguel Vatter eds., The Government of Life: Foucault, Biopolitics, and Neoliberalism (New York: Fordham University Press, 2014), 98–111. Adorno writes, “Modernity is haunted by the will to know the body so as to manipulate, alter, and modify it, and finally so as to make it immortal: in this will to modify the body one sees the elements of a ‘somatocracy’ that, according to Foucault, takes the place of a ‘theocracy’ ” (99). Fisher, In Defiance of Death, 1. This begs the question of how the other 10% say they would prefer to die. Having said that, I do not intend to glorify “home” here—often dying at home is simply not possible, because the support required is not available. And sometimes dying at home is not attractive. Still, when people envision the good death, this is how they tend to characterize it. And the shifts necessary in our approach to end-of-life care in the United States to make this more accessible to more people are not, necessarily, seismic. So for all that the ideal of home-death (like

Notes

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25. 26. 27.

28.

29. 30. 31.

32.

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homebirth) needs to be critically deconstructed, the practical option still deserves to be taken seriously. Joan Teno, Pedro Gozalo, Julia Bynum, et  al., “Change in End-of-Life Care for Medicare Beneficiaries:  Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009,” Journal of the American Medical Association 309, no. 5 (2013): 470–477. Jeanne Guillemin, “Planning to Die,” Society (1992): 31. Guilleman, “Planning to Die,” 31. As of 2019, this rate appeared to be dropping, with more Americans who died of natural causes dying at home. Sarah H. Cross and Haider J. Warraich, “Changes in the Place of Death in the United States,” Journal of the American Medical Association 318, no. 24 (2019): 2369–2370. Margaret Jean Hall, Shaleah Levant, and Carol J. DeFrances, “Trends in In-patient Hospital Deaths: National Hospital Discharge Survey, 2000-2010,” NCHS Data Brief No. 118 (2013). At: https://www.cdc.gov/nchs/data/databriefs/db118.pdf Erickson, How We Die Now, 148. CBS News, “60 Minutes” report on “The Cost of Dying” (November 19, 2009). At: http://www.cbsnews.com/news/the-cost-of-dying/ Put differently, the problem is not an individual or idiosyncratic one. Some individuals may have good dying experiences (their own or a loved one’s) and thus not perceive a problem, however, while others may have terrible experiences but not perceive the broadly shared nature of the problem. But the problems are more typical than atypical, and indeed one way that the governing mentality may function so effectively in both birth and death is by invisibilizing them and framing them as thoroughly private and personal, and thus corrupted by being politicized. As Mark Button suggests, in “Suicide and Social Justice,” Political Research Quarterly 69, no. 2 (2016): 270–280, the personal experience of tragedy following the loss of a loved one to suicide must be distinguished from the political and social wrong of the conditions (not reducible to individual psychopathology) that make suicide attractive. So with death and dying here: the experience of personal mourning that attaches to a particular death must not exhaust our thinking about how to feel with regard to death; a more broadly shared affective response involves the necessary political and social response of critique of systemic, structural, and largely economic constraints on better dying. “NHPCO Facts and Figures: Hospice Care in America” (Washington, DC: National Hospice and Palliative Care Organization, 2012). Hospice care typically must be funded by charity to get it up and running before Medicare will recognize it for reimbursement, so education and wealth levels of a community can greatly impact access to hospice. See Steven Reinberg, “While Hospice Care Is Growing, Not All Have Access,” ABC News Report (April 12, 2008). At:  http://abcnews.go.com/ Health/Healthday/story?id=4636902; Angela Spruill, Deborah K. Mayer, and Jill B. Hamilton, “Barriers in Hospice Use Among African Americans with Cancer,” Journal of Hospice and Palliative Nursing 15, no. 3 (2013): 136–144. When families are able to access adequate hospice care for their dying loved ones, surveys show 73.9% rated the care and overall experience as “excellent” (see http://www.nhpco.org/sites/default/

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33. 34.

35. 36.

37.

38. 39. 40.

41.

42. 43.

Notes files/public/Statistics_Research/2012_Facts_Figures.pdf). Finally, see Gail Gazelle, “Understanding Hospice—An Underutilized Option for Life’s Final Chapter,” New England Journal of Medicine 357, no. 4 (2007): 321–324. Henry Perkins, “Controlling Death: The False Promise of Advance Directives,” Annals of Internal Medicine147, no. 1 (2007): 55. See John Adams, Risk (New  York:  Routledge, 2001), arguing that “Risk perceived is risk acted upon” (31). The health insurance industry is part of the equation here, clearly. As noted in Hadi Karsoho, Jennifer R. Fishman, David Kenneth Wright, and Mary Ellen MacDonald, “Suffering and Medicalization at the End of Life: The Case of Physician-Assisted Dying,” Social Science and Medicine 170 (2016):  188– 196, therapies that were originally intended as last a resort (like implantable cardiac defibrillators) often become standard care once covered by insurance, and thus come to be regarded as ethically necessary and hard for families to refuse. Melissa Cheyney, “Homebirth as Systems-Challenging Praxis,” Qualitative Health Research 18, no. 2 (2008): 254–267. A 2012 California Healthcare Foundation study showed that while 60% of people said it was “extremely important” to them that their families not be burdened by tough decisions related to their end-of-life care, over 50% of people did not communicate any wishes regarding that care to their family members. Liz Neporent, “You Only Die Once—Let’s Talk About It,” ABC News (February 20, 2013). At: http://abcnews. go.com/blogs/health/2013/02/20/you-only-die-once-lets-talk-about-it/ Carmel Shalev, “Reclaiming the Patient’s Voice and Spirit in Dying: An Insight from Israel,” Bioethics 24, no. 3 (2010): 134–144, citing James A. Tulsky, Gary S. Fischer, Mary R.  Rose, et  al., “Opening the Black Box:  How Do Physicians Communicate About Advance Directives,” Annals of Internal Medicine 129, no. 6 (1998): 441–449. Perkins, “Controlling Death,” 52. Perkins, “Controlling Death,” 52. In Chapter 3 I referenced Jessica Mitford’s 1992 book The American Way of Birth. But before that she wrote the groundbreaking book The American Way of Death (New York: Simon & Schuster, 1963), examining how funerals became big business, partly because of how the funeral industry capitalized on grief and the medical/cultural propensity for a deep discomfort with facing the reality of death. Daniel Callahan, The Troubled Dream of Life: Living with Mortality (New York: Simon & Schuster, 1993), 40. See also Adele E. Clarke, Laura Mamo, Jennifer Ruth Fosket, Jennifer R. Fishman, and Janet K. Shim, eds., Biomedicalization: Technoscience and Transformations of Health and Illness in the U.S. (Durham, NC:  Duke University Press, 2010). Nuland, How We Die, 259. Tad Friend, “Silicone Valley’s Quest to Live Forever,” New  Yorker (April 3, 2017) (http:// www.newyorker.com/ magazine/ 2017/ 04/ 03/ silicon- valleys- quest- to- live forever?mbid=nl_170327_Daily&CNDID=25013258&spMailingID=10702659&sp UserID=MTMzMTgyNjI1MTYxS0&spJobID=1122167892&spReportId=MTEyMj E2Nzg5MgS2). See also A. Dumas and B. S. Turner, “The Life-Extension Project: A Sociological Critique,” Health Sociology Review 16, no. 1 (2007): 5–17, articulating

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45. 46. 47.

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a critique of what they call the ideology of “prolongevism.” In Dying, Broom argues that the medicalization of dying means dying has been transformed into a “medical challenge” not an “existential moment.” As the radical environmentalist and writer Edward Abbey put it, reflecting on his own impending demise: “If your life has been wasted, then naturally you’re going to cling like a drowning man to whatever kind of semi-life medical technology can offer you, and you’re going to end up in a hospital with a dozen tubes sticking in your body, machines keeping your organs going. Which is the worst possible way to die. One’s death should mean something. Those who fear death most are those who enjoy life least. Death is every man’s final critic. To die well you must live bravely” (quoted in Doug Peacock, Walking It Off: A Veteran’s Chronicle of War and Wilderness [Cheney, WA: Eastern Washington Press, 2005], 41). As Abbey’s close friend, Peacock recounts helping Abbey die and have the wild burial he sought, but also laments, “The medical data were analyzed. All Ed needed to live another decade or two was to not bleed anymore and to get a blood transfusion. But Ed wouldn’t go for more technical intervention. This was it” (43). Note that while I mean something specific here, there is a double entendre: in a world where death is the ultimate enemy, it isn’t actually seen as a viable choice. So, much as we pretend to think death acceptance is noble, the medical system is stacked firmly against that “choice”: removing a loved one from life support is often challenging; PAD is only legal in a few states; the requirements to get hospice care are a barrier for many who want to make this shift; and even simply declining maximally aggressive treatment is hard for some people (for example, if they have advance directives or do-not-resuscitate orders that are not honored). One friend recalled for me how his mother, when diagnosed with cancer, knew immediately that she had no interest in undergoing chemotherapy, a treatment she had watched three siblings and her mother-in-law endure over the years. She was able to be part of a clinical trial for an immunotherapy drug, which was going alright until she had a bad reaction by way of acute pancreatitis. At that point, she informed her doctors that she intended to exit the trial, and they urged her to start chemo (in her son’s interpretation, so there was still a possibility that she could be part of the clinical trial). As he recounts it, “She said flatly no, telling them she didn’t want to do it and exiting the study. They were floored, and almost disrespectfully persistent in trying to get her to take chemo (i.e., stay in the study). They made it really hard for her to live with that decision. She made it very decidedly, but they were not at all respectful of it. Of course, it was hard for me and my dad to accept as well but we did our best to respect her wishes. And I came to admire her strength and courage in making that decision.” I am grateful to Rob Watkins for sharing this story with me. Shalev, “Reclaiming the Patient’s Voice.” Rose, Politics of Life Itself. Byock, “Meaning and Value of Death,” 284. During a “60 Minutes” interview in 2009, Byock said, “Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse. Most generally, it’s having someone you love die badly.” When asked what “die badly” meant, Byock responded, “Dying suffering. Dying connected to machines. I mean, denial of death at some point becomes

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48. 49. 50. 51. 52.

53.

54.

55. 56. 57. 58. 59. 60. 61. 62. 63.

64. 65. 66. 67. 68.

Notes a delusion, and we start acting in ways that make no sense whatsoever. And I think that’s collectively what we’re doing.” Fisher, In Defiance of Death, 12. Fisher, In Defiance of Death, 13. Gawande, “Letting Go,” 173. Gayle Sulik and Astrid Eich-Krohm, “No Longer a Patient: The Social Construction of the Medical Consumer,” Advances in Medical Sociology 10 (2008): 15. David Clark, “Between Hope and Acceptance: The Medicalization of Dying,” British Medical Journal 324 (2002): 906. Clark cites the philosopher Ivan Illich’s critique of the medicalization of dying, namely “A loss of the capacity to accept death and suffering as meaningful aspects of life” (905). Allan Kellehear, A Social History of Dying (Cambridge, UK: Cambridge University Press, 2007), 92. The bad death, then, became dying without making preparations to care for others, when there was time to do so; or a death that came too quickly and didn’t allow time for settling debts and fulfilling obligations. Necessary because urban elites, a class that “did not toil,” began living longer and dying different kinds of deaths—not from labor accidents or violence, but sickness and age. Kellehear, Social History of Dying, 145. Kellehear, Social History of Dying, 151. Kellehear, Social History of Dying, 181. Neil Thompson, June Allan, Philip A. Carverhill, et al., “The Case for a Sociology of Dying, Death, and Bereavement,” Death Studies 40, no. 3 (2016): 172–181. Steve Conway, ed., Governing Death and Loss:  Empowerment, Involvement and Participation (New York: Oxford University Press, 2011), 71. Erickson, How We Die Now, 108. This point mirrors that in the previous chapter, about the rise of the birth plan and the decline of the birth class. Alex Broom, “On Euthanasia, Resistance, and Redemption:  The Moralities and Politics of a Hospice,” Qualitative Health Research 22, no. 2 (2012): 226–237. The first modern hospice center was founded by Dr. Cicely Saunders in London in 1967, in response to what she observed to be the undertreatment of the symptoms of dying people. Hospice itself was not a religious movement, but hospitals grew largely out of the Christian mandate to “heal the sick,” and many hospitals still retain religious affiliation. Some would say that hospice has its own religion, or religiosity. Denominational or not, there is a strong sense in which “redemption” is part of the stages of dying, or part of the “good death.” Karsoho et al., “Suffering and Medicalization,” 189. Karsoho et al., “Suffering and Medicalization,” 194. Broom, “On Euthanasia, Resistance, and Redemption,” 234. On the effects of caregiving on the caregivers, see Martha Albertson Fineman, The Autonomy Myth: A Theory of Dependency (New York: New Press, 2004). In How We Die Now, Erickson notes that most employees in the facility where she did her ethnographic research had advance directives. A 2017 Science Daily article,

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69. 70.

71.

72.

73.

74.

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however, reported on a recent Florida Atlantic University College of Nursing study, showing that out of almost nine hundred hospice workers surveyed, only 44% had completed an advance directive. At: https://www.sciencedaily.com/releases/2017/11/ 171109093241.htm Geoffrey Scarre, “Can There Be a Good Death?,” Journal of Evaluation in Clinical Practice 18, no. 5 (2012): 1082–1086. Taking their name from this skit, Not Dead Yet is a national organization of disability rights activists that fights against the legalization of euthanasia and PAD as “deadly forms of discrimination.” See Scarre, “Can There Be a Good Death?” (1083), discussing the Debate of the Age, Health and Care Study Group’s “12 Principles of a Good Death.” Scarre writes, “For all its good intentions, this rather gives the impression that looking after the dying is akin to organizing a conference, assembling flat-pack furniture or baking a cake: something that ought to turn out all right so long as the rules are followed.” He continues, “The impression given is that dying well is mostly about having the right opportunities and services available to draw on—a strikingly consumerist conception and one that imposes no moral demands on the subject” (1086). Though Scarre’s primary claim is that the very idea of a “good death” is an oxymoron, he recognizes that there are better and worse dyings, and he takes the Stoic point seriously, arguing that a good dying manifests certain virtues appropriate for a human being such as “patience, fortitude, a readiness to put up with pain, a capacity to evaluate one’s past life without evasion or distortion, a readiness to forgive and ask forgiveness, and a disposition to comfort others who will be grieved by one’s passing.” This work posits a strong normative account of what good dying is, which is both provocative and demanding of rigorous critique (including its conception of what is “appropriate for a human being”). But I appreciate Scarre’s aim, namely to return us to a framework where ethical preparation for death, and not merely managerial planning, is valued. As Peter Beresford and Suzi Croft note, however, dying is now a protracted affair for many people. Thus even “the dying” may have plenty of time to act on a new political subjectivity. “Involvement and Empowerment at the End of Life: Overcoming the Barriers,” in Conway, Governing Death and Loss, 53–62. In talking to people about this book, I  have been amazed by the reverential tone and deep gratitude, even joy, expressed by people who felt their loved ones—and them—were well cared for, guided, empowered, and supported in the dying time. Overwhelmingly these are narratives about hospice care, and the learning about life that comes in learning about death (including through the implicit critique of hyper-medicalized institutional dying, and its sterile power relations and absence of supported meaning making). See, for example, S. Lochlann Jain’s “How to Do Responsibility: Apology and Medical Error,” in Andrew Parker, Austin Sarat, and Martha Merrill Umphrey, eds., Subjects of Responsibility: Framing Personhood in Modern Bureaucracies (New York: Fordham University Press, 2011), 38–57. Jain analyzes the “emergent public relations adoption of the term responsibility, one that is found in the increasing demand on doctors to offer apologies to patients,” and how the deep desire to give healthcare a human face

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76. 77.

78.

79.

80.

81. 82. 83. 84. 85. 86.

Notes leads many aggrieved parties to readily accept individualized responsibility in the form of the medical apology versus the lawsuit (39). As Ella Myers writes, the desire to change a particular feature of the world is what becomes a “site of mobilization” for democratic activity. Worldly Ethics: Democratic Politics and Care for the World (Durham, NC:  Duke University Press, 2013), 93. Bonnie Honig, Public Things: Democracy in Disrepair (New York: Fordham University Press, 2017). Sara Rushing, “Preparing for Politics:  Judith Butler’s Ethical Dispositions,” Contemporary Political Theory 9, no. 3 (2010): 284–303. Across his body of work, William Connolly has explored the way that experience at the affective and bodily register, below and before the level of consciousness, can be understood to inform and direct our normative projects. As I discuss ahead, in Chapter 6, Stephen K. White similarly examines how the “self ” part of the citizen-self comes into being, and develops a “democratic bearing” that might tip toward a variety of political tacks. Here I think of how physician disgust with or fear of death could be transformed to challenge the default to the kind of “medical warfare” that “battling” disease to the very end entails (a literal fight to the death), and ground a shared sense of mortality capable of fostering meaningful change in death and dying practices. As the French philosopher Francoise Dastur put it, in How Are We to Confront Death? (New York: Fordham University Press, 2012), such a transformation is “possible only if the physician or therapist refused to be confined to the impersonal role of the one who holds objective knowledge and instead accepts sharing with his patient the same vulnerability that makes both of them mortals. The consequence of such a conception of the medical art and of therapy would be that in the application of his acquired competence, the doctor does not behave only as a technician or scientist, but also as a human, a mortal” (46). While I  do not think Butler says this, her ideas about positive affects and action are frequently left implied. See Sara Rushing, “Butler’s Ethical Appeal: Being, Feeling and Acting Responsible,” in Moya Lloyd, ed., Butler and Ethics (Edinburgh, Scotland: Edinburgh University Press, 2015), 65–90. “The Optimistic Agonist,” interview of Bonnie Honig by Nick Pearce for Our Kingdom, March 7, 2013. At: http://www.opendemocracy.net/ourkingdom/nick-pearce-bonniehonig/optimistic-agonist-interview-with-bonnie-honig James Martel, The Misinterpellated Subject (Durham, NC:  Duke University Press, 2017). Judith Butler, Precarious Life (New York: Verso, 2004), 44. Wendy Brown, Undoing the Demos: Neoliberalism’s Stealth Revolution (Cambridge, MA: Zone Books, 2015), 17. For a cinematic reminder about one high-profile crusader for death as public and political, see the 2010 HBO biopic about Dr. Jack Kevorkian, “You Don’t Know Jack.” Barbara Cruikshank, The Will to Empower: Democratic Citizens and Other Subjects (Ithaca, NY: Cornell University Press, 1999), 20. As Honig puts it, in Antigone, Interrupted (New York: Cambridge University Press, 2013), 88.

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Chapter 5 1. Doug Peacock, Walking it Off: A Veteran’s Chronicle of War and Wilderness (Cheney, WA: Eastern Washington University Press, 2005), 112–113. 2. Camillo Mac Bica, Veterans Today, August 31, 2013. At: http://www.veteranstoday. com/2013/08/31/does-ptsd-eligibility-demean-the-purple-heart/ 3. Military Order of the Purple Heart, press release (September 8, 2014). At: http://www. purpleheart.org/News.aspx?Identity=287 4. From the Veterans Affairs website: “The Veterans Health Administration is America’s largest integrated health care system, providing care at 1,255 health care facilities, including 170 medical centers and 1,074 outpatient sites of care of varying complexity (VHA outpatient clinics), serving 9 million enrolled Veterans each year.” At: https:// www.va.gov/health/ 5. Letters to the Editor, Stars and Stripes (May 7, 2008). At: https://www.stripes.com/ opinion/letters-to-the-editor-for-wednesday-may-7-2008-1.79362 6. Jeff Schogol, “Pentagon: No Purple Heart for PTSD,” Stars and Stripes (January 6, 2009). At: https://www.stripes.com/news/pentagon-no-purple-heart-for-ptsd-1.86761 7. Michael J. Sandel, Justice: What’s the Right Thing to Do? (New York: Farrar, Straus and Giroux, 2009), 11. 8. Sandel, Justice, 11. 9. As Greg Goldberg and Craig Willse write, our contemporary military conflicts take place “within a timescape that denies the familiar ‘peacetime-war-aftermath’ and puts in its place the ongoing battles beyond the end of an undeclared war.” In Patricia Ticineto Clough and Jean Halley, eds. The Affective Turn (Durham, NC: Duke University Press, 2007), 264. See also Zoë Wool’s After War:  The Weight of Life at Walter Reed (Durham, NC: Duke University Press, 2015), discussing how time gets disrupted when “soldiers’ quotidian efforts to live on in the afterward collide with the myth-laden post-9/11 public imaginary of them” (3). 10. Eli Clare, Brilliant Imperfection: Grappling With Cure (Durham, NC: Duke University Press, 2017), 11. 11. Clare, Brilliant Imperfection, 41. 12. Dexter Filkins, The Forever War (New  York:  Vintage, 2009); Conor Friedersdorf, “Congress May Declare the Forever War,” The Atlantic (June 12, 2018). At: https:// www.theatlantic.com/politics/archive/2018/06/congress-may-declare-the-foreverwar/562175/. On the “long war” see David Wood, “The Grunts: Damned if They Kill, Damned if They Don’t,” The Huffington Post (March 18, 2014). At: https://www.law. upenn.edu/live/files/4601-moral-injury-david-wood-huffpopdf 13. As Erin Finley notes in Fields of Combat: Understanding PTSD Among Veterans of Iraq and Afghanistan (Ithaca, NY: Cornell University Press, 2012), World War II recorded 30% fatalities, Vietnam 24%, and Iraq/Afghanistan 10%. But in 2012, the Institute of Medicine estimated that 13% to 20% of veterans returning from Iraq and Afghanistan have PTSD, a rate notably higher than any other national military (117). A  2014 RAND study claimed that “at least” 20% of Iraq/Afghanistan veterans had PTSD and/ or depression. At: http://www.veteransandptsd.com/PTSD-statistics.html

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14. Dana Priest and Anne Hull published a ten-part series on “Walter Reed and Beyond,” which ran in the Washington Post from February to September 2007. The coverage exposed the poor quality of conditions, the long waits for treatment, the inferior or limited care provided, the belated attention to PTSD as a serious issue for the military to address, and the difficulty many veterans had getting a PTSD diagnosis, among other issues. As a result of their reporting, numerous high-level personnel at Walter Reed were replaced, the Pentagon launched an investigation, Congressional hearings were held, and the president created a bipartisan commission on healthcare for wounded veterans. 15. This tension has led artists to visualize life with PTSD. See Ema O’Connor, “This Jarring Photo Series Captures What PTSD Really Looks Like,” Buzzfeed News (June 11, 2017). At:  https://www.buzzfeednews.com/article/emaoconnor/ this-is-what-a-veteran-looks-like 16. In The Birth of the Clinic: An Archaeology of Medical Perception (New York: Vintage, 1994), Foucault well captures the Western medical and cultural deference to the visible, writing, “The residence of truth in the dark centre of things is linked, paradoxically, to this sovereign power of the empirical gaze that turns their darkness into light” (xiv). 17. See also Jason Koebler, “New Prosthetics Keep Amputee Soldiers on Active Duty,” US News & World Report (May 25, 2012), detailing how prosthetics have gotten so advanced that, when combined with “strong will power,” they allow soldiers to return to active duty, and even further combat. At: http://www.usnews.com/news/articles/ 2012/05/25/new-prosthetics-keep-amputee-soldiers-on-active-duty 18. For a detailed analysis of PTSD’s emergence as a distinct category after the Vietnam war see Allan Young, The Harmony of Illusions:  Inventing Post-Traumatic Stress Disorder (Princeton, NJ:  Princeton University Press, 1997). For a historical account see Pamela Moss and Michael J. Prince, Weary Warriors: Power, Knowledge, and the Invisible Wounds of Soldiers (New  York:  Berghahn, 2014). Statistics available at the U.S. Department of Veterans Affairs website, “Mental Health Effects of Serving in Afghanistan and Iraq” (http://www.ptsd.va.gov/public/PTSD-overview/ reintegration/overview-mental-health-effects.asp). See also Emily Wax-Thibodeaux, “Female Veterans Battling PTSD from Sexual Trauma Fight for Redress,” Washington Post (December 25, 2014). At:  https://www.washingtonpost.com/politics/femaleveterans-battling-ptsd-from-sexual-trauma-fight-for-redress/2014/12/25/f2f22d8e7b07-11e4-b821-503cc7efed9e_story.html 19. Finley, Fields of Combat, 162. See also Kit O’Connell, “The Establishment:  Why Veterans with PTSD Are Turning to Cannabis,” discussing a veteran named Michiko: “Her PTSD is triggered by hospital settings and authority figures, making it difficult or even impossible for her to receive conventional treatment. That’s because, when she was in basic training, Michiko’s commander raped her while she was in a military hospital suffering from a fever.” Multidisciplinary Association for Psychedelic Studies (October 4, 2016). At: https://www.maps.org/news/media/6374the-establishment-why-veterans-with-ptsd-are-turning-to-cannabis. Fifty percent of female veterans with PTSD from MST do not use VA healthcare, because they

Notes

20.

21. 22. 23.

24.

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feel unsafe there. Amanda K. Gilmore, Margaret T. Davis, Anouk Grubaugh, et al., “‘Do You Expect Me to Receive PTSD Care in a Setting Where Most of the Other Patients Remind Me of the Perpetrator?’:  Home-Based Telemedicine to Address Barriers to Care Unique to Military Sexual Trauma and Veterans Affairs Hospitals,” Contemporary Clinical Trials 48 (2016): 59–64. In 1994 the DSM-IV made a minor change to the definition of PTSD, dropping the diagnostic criteria that the event generating the trauma be “outside the usual range of human experience.” Ann Jones, They Were Soldiers:  How the Wounded Return from America’s Wars—The Untold Story (San Francisco, CA:  Haymarket Books, 2013), 143. This change reflects recognition that traumatic events are standard experiences in war. Jones suggests that PTSD is a way of masking, with medical diagnosis as a psychological disorder, the existential rage that many soldiers express about what they have done and seen, a rage that is political and moral (148). Similarly, Patricia Benner, Jodi Halpern, Deborah R. Gordon, et al., in “Beyond Pathologizing Harm: Understanding PTSD in the Context of War Experience,” Journal of Medical Humanities 39 (2018): 45–72, argue that when understandings of combat PTSD are developed through narrative processes that take the experience of war seriously, PTSD can be grasped not as something “inside the soldier” but as a reflection of how soldier and world meet. In this “social model,” PTSD can be seen as a very logical response to the world encountered in war (46). See also Brianne P. Gallagher, “Burdens of Proof:  Veteran Frauds, PTSD Pussies, and the Spectre of the Welfare Queen,” Critical Military Studies 2, no. 3 (2016): 1–16, on understanding PTSD within the distinct “ordering practices of militarized systems of violence and terror” (7). Benner et al., “Beyond Pathologizing Harm.” Finley, Fields of Combat, 160. Jonathan Shedler, quoted in Psychology Today (October 2, 2013), with full study published as “Where Is the Evidence for ‘Evidence-Based’ Therapy?,” Journal of Psychological Therapies in Primary Care 4 (2015):  47–59. Shedler notes a recent study in the Journal of Consulting and Clinical Psychology showing that about half the therapists who call themselves cognitive-behavioral therapists routinely break from the “instruction manual” and use fundamentally psychodynamic approaches (open-ended, unstructured, interpersonal engagement between the therapist and the patient). Further, Shedler notes that most studies on cognitive-behavioral therapy compare “evidence-based” therapies to no therapy or to highly managed therapy in isolated control settings, not to more traditional models of therapy as they are actually practiced. Finally, he describes the very term “evidence-based” as a marketing tool more than an accurate characterization of one therapy versus another. After reading recent studies that try to assess the actual mental healthcare treatment preferences of veterans, it becomes clear how the “evidence-based” framework can function less to improve treatment regimens and more to sell existing approaches in terms that resonate with veterans, or to create a feeling of choice and control without necessarily changing the treatment menu. Alison Howell, “The Demise of PTSD:  From Governing Through Trauma to Governing Resilience,” Alternatives: Global, Local, Political 37, no. 3 (2012): 214–226,

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25. 26.

27. 28. 29. 30. 31. 32. 33. 34. 35.

36. 37.

Notes 215. Howell charts how trauma went from a physical description to a mental disorder, and got increasingly medicalized as it took on a more important role in military frameworks. She writes, “War and heightened militarism have historically been tied to innovation in the psy disciplines. Militaries, in particular, have been sites in which modes of discipline and governance have been invented and honed, and subsequently migrated into civilian contexts” (217). See also Moss and Prince, Weary Warriors, Chapter 3, “Classifying Bodies Through Diagnosis: Knowledges, Locations, and Categorical Enclosures.” For analysis of the power and problem of diagnosis in the context of other conditions, including “mental retardation,” cerebral palsy, schizophrenia, and gender identity disorder, see Clare, Brilliant Imperfection. Benner et al., “Beyond Pathologizing Harm,” 54. Finley, Fields of Combat, 121. In terms of the “neoliberalization of healthcare” across medical domains, it bears mentioning that most recent attempts to address the timeto-treatment problem, including the Veterans First Act, have involved efforts to privatize veteran healthcare. Approved by the Senate Veteran Affairs Committee in May 2016, that bill aimed to fix problems with the original privatizing fix, the Veterans Choice program, through enhanced accountability measures. But greater “choice” here does not seem to mean greater “control.” As Suzanne Gordon notes, in The Battle for Veterans’ Healthcare: Dispatches from the Frontlines of Policy Making and Patient Care (Ithaca, NY:  Cornell University Publishing, 2017), “in reality the Choice bill would ultimately erode real choice by weakening the VHA option, putting the entire veterans’ health system at risk. The VHA’s current budget is, in part, determined by how many veterans use the system and for what services” (45). Clare, Brilliant Imperfection, 142. Clare, Brilliant Imperfection, 158. Finley, Fields of Combat, 125. Finley, Fields of Combat, 121. G. Terence Wilson, “Manual-Based Treatments: The Clinical Application of Research Findings,” Behavior Research and Therapy 34, no. 4 (1996): 295–314. Wilson, “Manual-Based Treatments,” 297. Benner et al., “Beyond Pathologizing Harm,” 54. Benner et al., “Beyond Pathologizing Harm,” 57. Patricia Kelley, Deborah Kenny, Deborah R. Gordon, and Patricia Benner, “The Evolution of Case Management for Service Members Injured in Iraq and Afghanistan,” Qualitative Health Research 25, no. 3 (2015): 426–439. Benner et al., “Beyond Pathologizing Harm,” 66; 68. “This is a challenge that I often see when it comes to veteran mental health: many think that having to work with a mental health professional, aka ‘shrink,’ aka ‘going to see the wizard,’ aka ‘talking about your feelings and all that psychobabble crap,’ means that we are somehow weak, broken, mentally ill. With that kind of selfjudgment, which is reinforced by our peers and society at large, is it any wonder that a veteran avoids talking about their mental health and wellness?” Duane France, “Building Veteran Mental Wellness Rather than Treating Veteran Mental Illness,” American Grit (June 21, 2017). At:  https://www.americangrit.com/2017/06/21/

Notes

38.

39. 40. 41.

42.

43.

44. 45.

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building-veteran-mental-wellness-treating-veteran-mental-illness/. As Wool notes in After War, “Again and again the guys at Walter Reed would say how stupid it was to talk to psychiatrists who couldn’t understand anything because they hadn’t been there” (160). Eric F. Crawford, Eric Bradley Elbogen, H. R. Wagner, et al., “Surveying Treatment Preferences in U.S. Iraq-Afghanistan Veterans with PTSD Symptoms: A Step Toward Veteran-Centered Care,” Journal of Traumatic Stress 28, no. 2 (2015): 118–126. A 2014 study found the median number of sessions was five. While the standard number of treatments for prolonged exposure therapy and other evidence-based treatments is nine to twelve, one must undergo seven sessions to be classified as a “completer.” Juliette M. Mott, Sasha Mondragon, Natalie E. Hundt, et al., “Characteristics of U.S. Veterans Who Begin and Complete Prolonged Exposure and Cognitive Processing Therapy for PTSD,” Journal of Trauma Stress 27, no. 3 (2014): 265–273. Crawford et al. note that the two main reasons veterans give for avoiding treatment are avoiding psychotropic drugs and because treatment is not necessary (119). Lisa Najavits, “The Problem of Dropout from ‘Gold Standard’ PTSD Therapies,” F1000 Prime Reports 7 (2015): 43. Ralph J. Koek, “Treatment-Resistant PTSD,” Psychiatric Times 34, no. 11 (2017). At: http://www.psychiatrictimes.com/ptsd/treatment-resistant-ptsd Gordon, The Battle for Veterans’ Healthcare, 41. As Philip Longman put it, speaking with Gordon for her book (and in his own book, The Best Care Anywhere: Why VA Healthcare Is Better than Yours (Oakland, CA: Berrett-Koehler, 2012)), “The VA has long been the only actual example of socialized medicine in the United States. Unlike Medicare and Medicaid, it owns and operates its own hospital clinics, and most of the doctors and other medical professionals who work in these facilities are government employees with civil service protections” (63). Sandra Whitworth, “Militarized Masculinity and Post-Traumatic Stress Disorder,” in Jane Parpart and Marysia Zalewski, eds., Rethinking the Man Question in International Relations (London, UK:  Zed Books, 2008), 109–126. See also Carol Burke, Camp All-American, Hanoi Jane, and the High-and-Tight: Gender, Folklore and Changing Military Culture (Boston: Beacon Press, 2005). Personal conversation with Peter Lucier, June 11, 2018, Bozeman, Montana. In “Militarized Masculinity” Whitworth describes the stigma of PTSD within military communities as related to the “profound betrayal of the norms of hypermasculinity [in which] militarized men have been indoctrinated” (122). See Gallagher, “Burdens of Proof,” and Wool, After War, describing “the soldier body as an icon of normative masculinity” (3), and detailing the use of drugs like Viagra “as a kind of prosthetic masculinity” (172). U.S. Department of Veterans Affairs Benefits information. At: https://www.benefits. va.gov/COMPENSATION/types-disability.asp It is important to note, though, that “choice” is the dominant framework through which efforts to privatize veterans’ healthcare have taken place. The Veterans Choice Program was created to address backlogged cases and decreased services at the VA by allowing veterans to seek care from a private provider, after VA authorization and with VA payment.

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46. Melissa Cheyney, “Homebirth as Systems-Challenging Praxis: Knowledge, Power and Intimacy in the Birthplace,” Qualitative Health Research 18, no. 2 (2008): 254–267. 47. Finley, Fields of Combat, 144. 48. I say “nominally” because, while without a draft nobody is “forced” to serve, as one longitudinal study showed, “The greatest likelihood of military service versus college and the labor force occurs when young men of at least modest ability come from disadvantaged circumstances, experience minimal connectedness to others, and report a history of adolescent fighting.” Glen H. Elder, Jr., Lin Wang, Naomi J. Spence, et  al., “Pathways to an All-Volunteer Military,” Social Science Quarterly 91, no. 2 (2010): 455–475. Military service has, until recently, provided a “path to citizenship” for those seeking naturalization. 49. Howell, “The Demise of PTSD,” 220. Also, see the American Psychiatric Association’s overview of how the definition and diagnostic criteria of PTSD changed in the 2013 DSM-5, noting that it will continue to be identified as a “disorder” despite urging by military leaders to change it to an “injury,” “a description that they say is more in line with the language of troops and would reduce stigma.” At: http://www.dsm5.org/ Documents/PTSD%20Fact%20Sheet.pdf 50. Jones, They Were Soldiers, 23. 51. In my state, Montana, veterans (and Native Americans) commit suicide at three times the national average. 52. Gallagher, “Burdens of Proof.” 53. Gallagher, “Burdens of Proof,” 9. 54. Mark I. Nickerson and Joshua S. Goldstein, The Wounds Within: A Veteran, A PTSD Therapist, and a Nation Unprepared (New  York:  Skyhorse Publishing, 2015), discussing the prevailing morally neutral approach of saying, as they quote one father talking about his son, “things happened that changed him; it doesn’t necessarily matter what happened” (37). Does how we understand the “cause” of PTSD matter? Finley, for one, argues that conflicts over PTSD are really about the nature of warrelated suffering itself, and not only the suffering of the soldier. 55. William M. Marcellino and Frank Tortorello, “I Don’t Think I  Would Have Recovered: A Personal and Sociocultural Study of Resilience Among U.S. Marines,” Armed Forces & Society 41, no. 3 (2014): 513. 56. Howell, “The Demise of PTSD,” 221–222. 57. Howell, “The Demise of PTSD,” 221. 58. Howell, “The Demise of PTSD.” See also Brandon J. Griffin, Everett L. Worthington, Jr., Robert F. Dees, et al., “The Clinical Application of Humility to Moral Injury: An Exemplar of Positive Military Psychology,” in Everett L. Worthington Jr., Don E. Davis, and Joshua N. Hook, Handbook of Humility: Theory, Research, and Applications (New York: Routledge, 2016): 329–342, offering an analysis of “morally injurious” behavior or events in combat, and linking moral injury to PTSD. Written from an interest in military resilience, the authors suggest that humility, when inculcated before combat, “buffers the association between exposure to a potentially morally injurious event and mechanisms of distress (e.g., self-condemnation, threat to meaning, loss and grief, and sacred desecration)” (335).

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59. Quoted in David Chandler and Julian Reid, The Neoliberal Subject:  Resilience, Adaptation and Vulnerability (New York: Rowman & Littlefield, 2016), 45. 60. Chandler and Reid, The Neoliberal Subject. The paradox: uncertainty is pitched as inevitable, and also something that responsible individuals prepare for and control. See also Mark Neocleus, “Resisting Resilience,” Radical Philosophy 178 (2013): 2–7. 61. Sarah Bracke, “Bouncing Back: Vulnerability and Resistance in Times of Resilience,” in Judith Butler, Zeynep Gambetti and Leticia Sabsay eds., Vulnerability in Resistance (Durham, NC: Duke University Press, 2016), 61, 54. 62. David Chandler, “Resilience: The Societalization of Security,” in Chandler and Reid, The Neoliberal Subject, 47. 63. Jennifer Denbow, Governed Through Choice: Autonomy, Technology, and the Politics of Reproduction (New York: New York University Press, 2015). 64. Olga Khazan, “No Spanking, No Time-Out, No Problems:  A Child Psychologist Argues Punishment Is a Waste of Time when Trying to Eliminate Problem Behaviors. Try This Instead,” The Atlantic Monthly (March 28, 2016). 65. The claim that voluntary enlistment is a free “choice” is tenuous, given the demographics of enlistment and the reasons cited, including job training when none other exists, college tuition when the cost of higher education is prohibitive, escape from violent urban environments, escape from sexual abuse at home, to prove oneself a man, to do what generations of one’s family have done, etc. 66. See Moss and Prince, Weary Warriors, which identifies seven figures of the veteran that have populated the cultural domain over the twentieth and twenty-first centuries: the good warrior, the troubled hero, the outlaw, the misfit, the forgotten (abandoned) soldier, the disadvantaged outsider, the survivor (192). 67. Interview with Robert E. Martin in The Review (October 5, 2006). At: https://www. review- mag.com/ article/ doug- peacock- 039- s- environmental- call- to- arms- exgreen- beret- grizzly- man- author- inspirational- character- in- 039- he- monkeywrench-gang-039-on-defending-our-natural-resources 68. Peacock, Walking it Off, 120. 69. Peacock, Walking it Off, 27. 70. Peacock, Walking it Off, 111. 71. Peacock, Walking it Off, 113. 72. Peacock, Walking it Off, 124. 73. Peacock, Walking it Off, 123. 74. Peacock, Walking it Off, 112. 75. As a 2011 PEW study showed, 75% of post-9/11 veterans said they would tell another young person that they should join the U.S. military. Some exceptions are captured in Michael Gutmann and Catherine Lutz’s Breaking Ranks: Iraq Veterans Speak Out Against the War (Berkeley: University of California Press, 2010), which tells the story of six Iraq War veterans who came home radicalized and turned that subjectivity toward antiwar activism. They also describe some veteran groups speaking out against the war, including Iraq Veterans Against the War and Veterans for Peace. 76. As one military spouse noted to me recently, however, VA healthcare is “popular” because it is “the devil you know, and you never get a bill.” The popularity is not equally

192

77.

78. 79.

80. 81. 82. 83.

84. 85. 86.

87.

88. 89. 90.

Notes distributed, though:  women who suffer from PTSD because of MST are the least likely to use VA healthcare at all (only 50% seek VA care). One recent study documented, however, that as of 2018 an estimated one in six activeduty service members in deployed environments takes some kind of psychiatric drug. See Jocelyn Lim Chua, “Fog of War: Psychopharmaceutical ‘Side Effects’ and the U.S. Military,” Medical Anthropology 37, no. 1 (2018): 17. In Chua’s account, medicalization has become part of combat-readiness, not a contraindication to it—part of the process of returning soldiers to war zones more quickly than was previously thought advisable both for the well-being of the soldier and for the safety of other troops. For her, the interesting political and moral “side effect” to prescription drug use as part of war is the “new awakenings” it provokes in some soldiers, as they confront the deep dependence of the military on the medical establishment, and vice versa. Here, “drugs and war work in mutual provocation” on the consciousness of the particular research subject she studies at length, named “Jonathan.” Quoted in O’Connell, “The Establishment.” James Clark, “A Well-Kept Secret: How Vets and Their Doctors are Getting Around the VA’s Medical Marijuana Policy,” Task and Purpose, October 26, 2017. At: https:// taskandpurpose.com/va-medical-marijuana-policy-veterans/ Clark, “A Well-Kept Secret,” 23–24. O’Connell, “The Establishment,” 5–6. Weed for Warriors Project: Advocating for Veteran’s Right to Cannabis. At: https:// www.wfwproject.org/2018/07/wfwp-july-newsletter/ Susan Kaplan, “Yoga Now Standard Treatment for Vets with PTSD,” reporting for “The World” (March 21, 2013). At:  https://www.pri.org/stories/2013-03-21/yoga-nowstandard-treatment-vets-ptsd Quoted in Kaplan, “Yoga Now Standard Treatment.” An excellent analysis of how yoga and neoliberalism dovetail is Farah Godrej’s “The Neoliberal Yogi and the Politics of Yoga,” Political Theory 45, no. 6 (2017): 772–800. Rachel Zimmerman, “Harvard/Brigham Study:  Yoga Eases Veterans’ PTSD Symptoms,” WBUR Boston News (December 8, 2010). At:  http://www.wbur.org/ commonhealth/2010/12/08/harvard-brigham-medical-study-yoga-veterans-ptsd Robin Cushing, Katherine Braun, Susan Alden, and Alan Katz, “Military-Tailored Yoga for Veterans with Post-traumatic Stress Disorder,” Military Medicine 1, no. 183 (2018): 223–231. Kaplan, “Yoga Now Standard Treatment,” 6. Warriors at Ease. At: http://warriorsatease.org Karen Besterman-Dahan, Margeaux Chavez, and Eni Njoh, “Rooted in the Community: Assessing the Reintegration Effects of Agriculture on Rural Veterans,” Archives of Physical Medicine and Rehabilitation 99, no. 2 supplement (2018): S72– S78; Zachary Dietrich and Shauna Joye, “Promoting Resilience Among Veterans Using Wilderness Therapy,” Wilderness and Environmental Medicine 27, no.  3 (2016):  427; Zachary Clayborne Dietrich, Shauna Wilson Joye, and Joseph Amos Garcia, “Natural Medicine: Wilderness Experience Outcomes for Combat Veterans,” Journal of Experiential Education 38, no. 4 (2015): 394–406; Daniel Dustin, Nathan

Notes

91.

92.

93. 94. 95.

96. 97. 98. 99.

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Bricker, Joseph Arave, et  al., “The Promise of River Running as a Therapeutic Medium for Veterans Coping with Post-Traumatic Stress Disorder,” Therapeutic Recreation Journal 45, no. 4 (2011): 326–340; Nevin J. Harper, Julian Norris, and Marc D’astous, “Veterans and the Outward Bound Experience: An Evaluation of Impact and Meaning,” Ecopsychology 6, no. 3 (2014): 165–173; Brent L. Hawkins, Jasmine A. Townsend, and Barry A. Garst, “Nature-Based Recreational Therapy for Military Service Members: A Strengths Approach,” Therapeutic Recreation Journal 50, no. 1 (2016): 55–74; Dorthe Varning Poulsen, Ulrika K. Stigsdotter, and Dorthe Diernis, “‘Everything Just Seems Much More Right in Nature’:  How Veterans with Posttraumatic Stress Disorder Experience Nature-Based Activities in a Forest Therapy Garden,” Health Psychology Open 3, no. 1 (2016); Dorthe Varning Poulsen, Ulrika K. Stigsdotter, and Anne Dahl Refshage, “Whatever Happened to the Soldiers? NatureAssisted Therapies for Veterans Diagnosed with Post-traumatic Stress Disorder: A Literature Review,” Urban Forestry & Urban Greening 14, no. 2 (2015): 438–445. David E. Scheinfeld, Aaron B. Rochlen, and Sam J. Buser, “Adventure Therapy:  A Supplementary Group Therapy Approach for Men,” Psychology of Men & Masculinity 12, no. 2 (2011): 188–194. Tay Wiles, “Wilderness as Therapist: A Growing Number of Veterans and Researchers Are Racing to Understand Nature’s Power to Heal,” High Country News (February 16, 2015). At: https://www.hcn.org/issues/47.3/wilderness-as-therapist Wiles, “Wilderness as Therapist.” Wiles, “Wilderness as Therapist.” Daniel Dustin, Kelly Bricker, Sandra Negley, et  al., eds., “Forward,” in This Land Is Your Land:  Toward a Better Understanding of Nature’s Resilience-Building and Restorative Power for Armed Forces Personnel, Veterans and Their Families (Urbana, IL: Sagamore Publishing, 2016), xi–xii. Chua, “Fog of War,” 26. R. Tyson Smith and Owen Whooley, “Dropping the Disorder in PTSD,” Contexts 14, no. 4 (2015): 38–43. Smith and Whooley, “Dropping the Disorder,” 42. Smith and Whooley, “Dropping the Disorder,” 42.

Chapter 6 1. William Connolly, The Fragility of Things: Self-Organizing Processes, Neoliberal Fantasies, and Democratic Activism (Durham, NC: Duke University Press, 2013), 175–176. 2. Connolly, The Fragility of Things, 179. 3. See Judith Butler, Precarious Life (New York: Verso, 2004); Douglas Crimp, Melancholia and Moralism: Essays on AIDS and Queer Politics (Cambridge, MA: MIT Press, 2002); Paul Gilroy, Postcolonial Melancholia (New York: Columbia University Press, 2005); Nichole Loraux, The Mourning Voice, An Essay on Greek Tragedy (Ithaca, NY: Cornell University Press, 2002); Nancy Luxon, “Beyond Mourning and Melancholia: Nostalgia, Anger and the Challenges of Political Action,” Contemporary Political Theory

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4. 5. 6. 7. 8. 9. 10.

11. 12. 13.

14.

15. 16. 17. 18.

Notes 15, no. 2 (2015):  139–159; David W. McIvor, Mourning in America:  Race and the Politics of Loss (Ithaca, NY:  Cornell University Press, 2016); David W. McIvor and Alexander Keller Hirsch, The Democratic Arts of Mourning: Political Theory and Loss (New York: Rowman & Littlefield, 2019); Simon Stow, American Mourning: Tragedy, Democracy, Resilience (New York: Cambridge University Press, 2017). Bonnie Honig, Antigone, Interrupted (New  York:  Cambridge University Press, 2013), 44. Honig, Antigone, Interrupted, 46. Honig, Antigone, Interrupted, 53–56. Honig, Antigone, Interrupted, 59–60. Honig, Antigone, Interrupted, 60. Honig, Antigone, Interrupted, fn. 73, 223. But again, not everyone will struggle with these dynamics of hyper-medicalization. Some will find their experiences with the clinic to be just what they bargained for, or something they never thought about in advance but found satisfactory. Thus, questions of autonomy and resistance will not arise for them in this context. Which is great! They just aren’t the point of departure for my analysis here. At the other end of the continuum, health activism like the anti-vaccination movement, which is driven by a deep skepticism of what “the experts” claim, and a desire to take health into their own hands against the mandates of the state, also strikes me as problematic. That is perhaps the subject of a follow-up project, however, and not a footnote! Connolly, The Fragility of Things, 180. Nick Pierce, “The Optimistic Agonist: An Interview with Bonnie Honig,” in Juncture (2013). At: https://www.ippr.org/juncture/juncture-interview-bonnie-honig In a Los Angeles Review of Books article on September 29, 2018, Honig wrote movingly about the women who stormed an elevator that Senator Jeff Flake was in, offering painful testimonial about their sexual assaults and demanding that Flake “look at me” and “don’t look away.” So perhaps her thinking on action amid vulnerability has changed, or perhaps she would still parse out collective action focused on world making from individual acts of citizen courage that function to inspire the collective action. Broadly, I think the distinction between my project and Honig’s is that I aim to show how traits of active citizenship can come from experiences of vulnerability, and Honig is focused more on thinking about how vulnerability can be managed by traits of active citizenship, so that it doesn’t foil action (or allow the ethical encounter to exhaust our energies for change) As Bonnie Honig understands “public things”—“sites of material engagement that interpellate us into citizenship, sometimes in diverse ways” (interview with McIvor and Hirsch in The Democratic Arts of Mourning), 207–217. Wendy Simonds, Hospital Land USA:  Sociological Adventures in Medicalization (New York: Routledge, 2017). Albert O. Hirschman, Exit, Voice, and Loyalty:  Responses to Decline in Firms, Organizations and States (Cambridge, MA: Harvard University Press, 1970). Hirschman, Exit, Voice, and Loyalty, 5. Hirschman, Exit, Voice, and Loyalty, 30.

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19. Mark Warren, “Voting with Your Feet:  Exit-Based Empowerment in Democratic Theory,” American Political Science Review 105, no. 4 (2011): 696. 20. As Patricia Benner, Jodi Halpern, Deborah R. Gordon, et  al., argue in “Beyond Pathologizing Harm:  Understanding PTSD in the Context of War Experience,” Journal of Medical Humanities 39 (2018): 67. 21. Hirschman, Exit, Voice, and Loyalty, 30. 22. Nick Couldry, Why Voice Matters: Culture and Politics After Neoliberalism (New York: Sage Publications, 2010). 23. Here Couldry references Judith Butler’s Giving an Account of Oneself (New  York: Fordham University Press, 2005). 24. Couldry, Why Voice Matters, 130. 25. Kristin Baird, “Scripting for Positive Patient Experience:  Five Steps for Success.” At:  http://baird-group.com/articles/scripting-for-positive-patient-experience-fivesteps-for-success 26. Warren, “Voting with Your Feet.” As Jennet Kirkpatrick points out, Hirschman focuses on exit primarily as a tool used to pressure decision makers to create change, so he is mostly oriented toward those managing the effects of exit, not those doing the exiting. Warren notes Hirschman’s limited focus as well, and thus explores how the exit effects the exiter. Warren’s broader point in engaging Hirschman is that his foundational dichotomy fails to illustrate the fact that exit and voice actually contribute to different goods: voice contributes to the good of “communication,” while exit contributes to the good of “empowerment.” As an individual act of empowerment, though, exit is not yet “democratic,” in Warren’s account. To count as democratic, the exit “must be linked to consequences for the entity subject to exit in such a way that the entity has the incentive to respond to the individual’s choice” (690–691). But even as an act of individual empowerment, the choice to exit is important, and Warren argues that democratic theorists should see exit not as a nonpolitical “out” people claim when the political act of voice has failed, but as a capacity that democracies should enable and institutionalize by protecting such choices (through law and policy) and fostering the conditions for viable alternatives to which one could exit. 27. Jennifer Denbow, Governed Through Choice: Autonomy, Technology, and the Politics of Reproduction (New York: New York University Press, 2015). 28. Jennet Kirkpatrick, The Virtues of Exit: On Resistance and Quitting Politics (Chapel Hill, NC: University of North Carolina Press, 2017). 29. Kirkpatrick, The Virtues of Exit, 21–22. 30. Kirkpatrick, The Virtues of Exit. 31. Jack Turner, “Performing Conscience:  Thoreau, Political Action, and the Plea for John Brown,” Political Theory 33, no. 4 (2005): 448–471. 32. Kirkpatrick, The Virtues of Exit, 67. 33. Shannon Mariotti, Thoreau’s Democratic Withdrawal: Alienation, Participation, and Modernity (Madison: University of Wisconsin Press, 2010). 34. Henry David Thoreau, Civil Disobedience (New York: Empire Books, 2011).

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35. In Chapter 1 I explored this tension using Wendy Brown’s insight that within neoliberal rationality we are subjected through our freedom, in a way that always implicitly invokes our dependency and vulnerability. 36. Steven K. White, A Democratic Bearing: Admirable Citizens, Uneven Injustice, and Critical Theory (New York: Cambridge University Press, 2017), 70–71. 37. White, Democratic Bearing, 79. 38. White, Democratic Bearing, 81. Ella Myers, Worldly Ethics: Democratic Politics and Care for the World (Durham, NC: Duke University Press, 2013). 39. White, Democratic Bearing, 81. 40. White, Democratic Bearing, 88. 41. White, Democratic Bearing, 89. 42. S. Lochlann Jain, “On Writing About Illness: A Dialogue with S. Lochlann Jain and Jackie Stacey on Cancer, STS, and Cultural Studies,” Catalyst:  Feminism, Theory, Technoscience 1, no. 1 (2015): 4.

Index For the benefit of digital users, indexed terms that span two pages (e.g., 52–53) may, on occasion, appear on only one of those pages. Abbey, Edward, 123, 180–81n43 ACOG (American College of Obstetricians and Gynecologists), 65, 74, 78, 79, 83–84, 173–74n73 ACT UP (AIDS Coalition to Unleash Power), 133–34, 139 affective attunement, 114–15 AIDS (Acquired Immunodeficiency Syndrome), 7, 97–98, 132–33 America Psychological Association (APA), 111 Americans with Disabilities Act, 96, 150–51n24 Anderson, Joel, 50 Anthropocene, the, x Antigone, 15, 132–33 Aquinas, Thomas, 36–37, 39–41, 159n26, 159n30, 161n50 Arendt, Hannah, 61–62, 102, 133–34, 135, 140–41, 143–44 Aries, Philippe, 90–91 Aristotle, vii, 9, 35, 46, 158n19, 159n29 Augustine, 35, 36, 39, 42, 158n24, 159n29, 159n31, 161n50 autonomy and birth culture, 27–28 and the body, 1 and death, 28 failed, viii–ix and feminist theory, 163n78, 163n79, 163n82 and freedom, 165n108 and Hobbes, 18–19 and humiliation, ix–x and humility, ix–x, 3–4, 16 inherited conceptions of, 24–25, 27,

and liberalism, 21–23 limitations of, 174n75 patient, xi–xii and power, 11–12 quest for, x, 26 refigured, 8–9, 31 relational, 27, 50–54, 56–58, 76, 80–81, 133, 163n81, 165n107 as site of politics, 27–28 and subjection, 177–78n19 substantive theory of, 164n99, 164–65n100 and veterans, 28–29 and vulnerability, 17 awakening, 8–9, 13, 26, 27–28, 63, 134, 145 of citizen–subjectivity, 109–10 embodied, ix political, 13–17, 25, 50, 62–63, 66–67, 84–85, 91–92, 102–5, 117–18, 140, 142, 152n50, 153n59   Baldwin, James, 13–14, 140–41 Bare, Stacey, 127 Beauvoir, Simone de, 2–3 Benhabib, Seyla, 31 Bennett, William, 34 Benson, Paul, 55–56 Berlant, Lauren, viii–ix biopolitics, 26, 66, 99, 168n20, 172n53, 173n69, 178n21 birth, xii, 3, 5–6, 8, 9, 11–12, 20, 61, 89–91, 92 American culture of, 27–28, 69–75 C-section, 53–54, 63, 70, 73–75, 77–78, 118 and citizenship, 16, 83–85, 136 and Hobbes, 17–18

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Index

birth (cont.) at home, 27–28, 74–75, 78, 83–84, 99, 119, 128, 137–38 and humiliation, 26 and humility-informed-relationalautonomy, 59, 116 and interdependence, 113 and knowledge, 133–34, 146 literatures addressing, 23, 76 and medical industrial complex, 21 medical institutional practices surrounding, 12–13 medicalization of, 20–21, 23–28, 101, 113–14 and Monty Python, 70–71, 101–2 and mortality, 101 and opting out, 119, 122–23 realistic account of, 31 as site of political awakening, 25, 27–28, 109, 131, 142 as a site of politics, 61 and subjection, 109 and systems-challenging praxis, 136 and voice, 138 and vulnerability, 12–13, 26, 103, 119, 145–46 See also midwifery Black Lives Matter, 13–14, 91–92, 178n21 body, the, 99 and autonomy, 59 and birthing subject, 65–66, 101 and citizen–subjectivity, 136, 144–45 and death, 101–2 grieving, viii–ix the human, 71 -mind, 103–4, 109–10, 113, 144–45 power/knowledge at work on, x and the self, 58 as site of politics, 1 and vulnerability, 32, 83 and Western thought, 1 and Williams, Serena, 63 See also embodiment Bracke, Sarah, 121–22 Broom, Alex, 98–99, 100–1, 180–81n43 Brown, Wendy, 9–10, 19, 21–22, 66, 67– 68, 77, 105–6, 147n8, 148n4 Business of Being Born, The, 68–69

Butler, Judith, viii–ix, 1, 4–5, 9, 15, 21–22, 25, 92, 103–4, 105, 131–34, 148n2, 150n16, 163n78, 184n82 Button, Mark, 33–34, 41– 43, 44– 45, 50– 51, 64, 84–85, 163n79, 163n82 Byock, Ira, 96, 181–82n47   Cheyney, Melissa, 119, 136 Childbirth Connection, 72, 170n41 choice, xi–xii, 98 and autonomy, 100–1 Berlant, Lauren on, viii–ix Butler, Judith on, viii and citizenship, 136 and Confucianism, 48 and control, 1, 59, 61, 88, 89–90, 99, 101, 105, 109, 118–19, 122–23, 126, 128, 140, 144–45 and death, 102 discourse of, 139–40 and empowerment rhetoric, 96 and exit, 137–38 feminism, 53–54, 55–56 and gut feeling, 55 and hospital scripting, 139 limited range of, 57–58 -making, 57, 117, 133–34, 142 and marketplace, 137–38 and medical consumerism, 97–98 and neoliberalism, 31–32, 142 paradigm, 96 private act of, 137, 139–40 and PTSD, 117–18 and relational autonomy, 53 and resilience training, 122 and systems–challenging praxis, 119 and veterans, 124–25, 130 Christianity, 1, 24–25, 27, 31, 34, 36, 37– 38, 42–45, 58– 59, 157–58n16 Christman, John, 50, 164n97 Cicero, 92 citizenship, 2–5, 7–13, 16, 25–26, 27– 30, 32, 34, 38, 45, 61–62, 66–68, 76, 79, 84–85, 103, 106, 108–10, 120, 128–29, 139, 140–42, 143– 45, 150n23, 150–51n24, 151n29, 190n48, 194n14

Index citizen-subjectivity, vii–viii, 9–14, 15–16, 22, 25, 29–30, 31, 32, 44, 50, 66, 67–69, 81–82, 92, 109–10, 123–24, 131, 135–36, 141–42, 143–44, 151n34 Clare, Eli, 20–21, 28–29, 109, 113 Code, Lorraine, 52–53 Comprehensive Soldier Fitness Program, 121 Confucius, ix–x, 45–50 Connolly, William, 19, 25, 131–32, 134, 142, 154n74, 184n77 Conway, Steve, 97–98 Cooper, Julie, 17–18, 157n6 Couldry, Nick, 138–39 Crimp, Douglas, 132–34 Cruikshank, Barbara, xiii, 9–10, 22, 66, 106, 151n34   Dakota Access pipeline, 14 Dean, Jodi, 66 death, 28, 87, 118–19, 175n4, 177n16, 178n21, 180n40, 184n78 and Antigone, 132–33 and autonomy, 26 and citizen-subjectivity, 9, 16, 109 dominant practices surrounding, 25 and freedom, 58 good and/or bad, 178–79n23, 179n31, 181n44, 181–82n47, 182n53, 182n63, 183n71 and Hira, 59 and humility-informed-relationalautonomy, 113, 116 and knowledge, 133–34 and learning, 146 literatures on, 23 and medicalization, 3, 6–7, 16, 21, 23– 24, 113–14, 182n52 and neoliberalism, 20, 122–23 normative timeline of, 6 panels, 4–5 and philosophy, vii and power, 11–12, 16–17, 131 as site of political awakening, 8–9, 25 speed of, xii and systems-challenging praxis, 136 time, viii–ix, 138

199

and vulnerability, 12–13, 24–25, 64, 145–46 See also hospice; PAD; suicide Denbow, Jennifer, 21–22, 66, 122, 164–65n100 Descartes, René, 18–19 disability, 5–6, 21, 28–29, 64, 71–72, 89, 97–98, 110–12, 117–19, 129–30, 136, 148n3, 149n8, 171n45 disability rights, 99–100, 183n70 disability studies, ix–x, 1, 2, 5– 6, 20– 21, 23, 26, 61, 89, 148n3, 149n7, 149n8, 150n16, 150– 51n24, 153n62 disposition(s), ix–x, xii, 3–5, 9, 11–12, 26, 31, 32, 33–34, 36–37, 38–39, 42–45, 47, 49–50, 55–56, 58–59, 63, 66–68, 71, 80–85, 91, 103–4, 116–17, 143– 45, 160n46, 183n71 Dodds, Susan, 76–77 Douglass, Frederick, 13–14, 140–41 DSM (Diagnostic and Statistical Manual of Mental Disorders), 113, 129–30, 187n20, 190n49   Eich-Krohm, Astrid, 96, 154–55n81, 155n84 Ellison, Ralph, 13–14 Elshtain, Jean Bethke, 15 embodiment, 2–3, 4, 12, 26, 58, 61, 63–64, 68–69, 79–80, 84, 92, 148–49n6, 149n8, 153n62 Emerson, Ralph Waldo, 13–14, 161n61 empowerment, 8, 21–22, 53–54, 63, 65– 66, 68, 80, 81–82, 94, 96, 121–22, 128, 130, 133–34, 139–40, 144–45, 146, 195n26 Erickson, Karla, 88, 182–83n68 Euben, Peter, vii euthanasia, 98–99, 176n14, 183n70 exit, 7–8, 22–23, 24–25, 27–30, 99–100, 118, 119, 128, 136–38, 139–42, 144–45, 181n44, 195n26, See also opt out Exline, Julia, 44   Fahrenheit 911, 14–15, 104 Ferguson, Kennan, 5–6, 153n62 Fineman, Martha, 92

200

Index

Finley, Erin, 112–14, 119, 185n13, 186–87n19, 190n54 Fisher, Kenneth, 96, 178–79n23 Foucault, Michel, x–xi, 7, 9, 21–22, 66, 118, 151n25, 152n41, 155n87, 168n17, 173n69, 178n22, 186n16 Friedman, Marilyn, 50, 52–53, 56–57, 164n90 Frost, Samantha, 2–3, 18–19   Gallagher, Brianne, 120–21, 122–23, 189 Galston, William, 50–51 Gates, Robert, 108 Gawande, Atul, 87–91, 93–94, 177n16 Geyer, Anna, 44 Giebel, Heidi, 39–41, 44, 162n74 Gold, Stephen Jay, 89 governance, 22, 50–51, 67–68, 90–91, 105–6, 122, 187–88n24 grief, vii–x, xi, 14, 16, 26, 64, 131–33, 135–36, 180n40, 190n58, See also mourning Guillemin, Jeanne, 93   Haraway, Donna, x Havel, Vaclav, 41, 43 Hira, 59, 130, 133, 144 Hirschman, Albert, 137–39, 195n26 Hirschmann, Nancy, 6, 56–58, 149n7, 149n8, 165n104, 165n107, 165n108 Hobbes, Thomas, 17–19, 31, 51–52, 78, 154n71 homo politicus, 9–10, 105–6 Honig, Bonnie, 14–16, 25, 29–30, 102–5, 132–34, 135, 140, 142–44, 194n13, 194n14 hospice, xii, 5, 24–25, 28, 98–101, 119, 122–23, 128, 136, 178n21, 179–80n32, 181n44, 182n63, 182–83n68, 183n73 Hospital Land USA, 3, 20, 21, 28–30, 65, 95–96, 136, 142 Howell, Alison, 120–21, 122–23, 187–88n24, 190n49 hubris, viii–ix, 2–3, 35, 47–48, 82–83, 131–32 physician, 95–96, 101–2 Hume, David, 31, 37–38, 42

humiliation, ix–x, xii, 3, 35–36, 58, 71, 82– 83, 101–2, 110–11, 116–17 humility, x, 3–4, 8–9, 16, 23, 25, 27–28, 31 and birth, 27–28 Christian, 24–25, 27, 31, 35–38 Confucian, 27, 45–50 and death, 28, 98–102 as disposition, ix–x, 38–39, 44–45 ethic of, 4–5 etymology of, ix–x and Hobbes, 17–19 as site of politics, 61 and systems-challenging praxis, 131 and veterans, 28–29, 107 virtue of, 3, 45 See also humility-informed-relationalautonomy humility-informed-relational-autonomy, 3–4, 25, 27, 29–30, 33, 59, 79–80, 91, 102, 128–29, 130, 144–46. See also Hira   Ingraham, Wendy, 69–70, 169n33 interdependence, 2, 8, 23, 24–25, 32–33, 43, 44, 68, 79–80, 92, 108–9, 117, 119   Jain, Lochlann, 11, 146, 183–84n74 Johnson, Harriet McBryde, 89   Kant, Immanuel, 21–22 Kazdin, Alan, 122 Kellehear, Allan, 96–98 Keys, Mary, 40–42, 43 Kirkpatrick, Jennet, 140–42, 195n26 Konkola, Kari, 34–35, 160n35 Krause, Sharon, 61, 165n107 Kübler–Ross, Elisabeth, 90–91 Kupfer, Joseph, 34, 162n68   Lazarus, Ellen, 71–72 Lee, Charles, 10 Libby, Dan, 126 liberalism, ix, 9–10, 16, 17–18, 21–22, 24–25, 26, 27, 31–32, 34, 39, 42–43, 50–53, 57, 58–59, 67–68, 78, 79–80, 84, 91, 92, 119 Lipscomb, Lila, 14–16, 104 Locke, John, x

Index loss, vii–xii, 1, 4–6, 14–16, 19–20, 26, 27, 29–30, 92, 103, 108, 111–12, 113–15, 119, 131–33, 140–41, 145–46 Lucier, Peter, 117   Machiavelli, Niccolò, 37–38, 84 MacIntyre, Alasdair, 50–51 Mackenzie, Catriona, 52–53 Mackey, John, 4 marijuana, 28–29, 123, 125–28, 136 Mariotti, Shannon, 141–42 Markell, Patchen, 9–10, 147n3, 156n93 Martel, James, 104–5, 155n87 Martin, Karen, 76 masculinity, 24, 28–29, 42 , 110–11, 116– 17, 118, 120–21, 189 McNay, Lois, 11–12 McRobbie, Angela, 66 medicalization, ix–x, 7–9, 19–22, 25, 29– 30, 65–66, 90–91, 98–100, 109, 113– 14, 120–21, 125, 126–29, 135–36, 140, 146, 154n79, 177n16, 180n34, 180–81n43, 192n77, 194n10 medical-legal-policy-insurance nexus, 7, 16, 24, 27–28, 62, 65, 88, 132–33, 139, 146, 165n108 Meyers, Diana, 54–56 midwifery, 23, 61–62, 65, 66, 74–76, 79–80, 82, 145–46, 167–68n15, 174–75n87 military mindset, 116–17, 126 Military Order of the Purple Heart (MOPH), 108 military sexual trauma (MST), 111, 186– 87n19, 191–92n76 Mill, John Stuart, 37–38 Montaigne, Michel de, 92 Moore, Michael, 14–15, 104 mortality rates, 6–7, 72, 171–72n52 Mouffe, Chantal, 66 mourning, vii, 14–15, 131–33, 135–36, 179n31, See also grief Myers, Ella, 103, 143, 184n75   Nacol, Emily, 18 National Academy of Medicine, 95 Nedelsky, Jennifer, 51–53, 56–57, 59, 61, 174n75

201

neoliberalism, vii–9, 18–22, 28, 29– 30, 31–32, 62, 64, 65–66, 67–68, 81, 82–83, 87, 90, 90–92, 95–96, 102, 105–6, 108–9, 113, 121– 24, 126, 137–39, 142, 154n73, 154n74, 168n20, 176–77n15, 178n21, 178n22, 188n26, 191n60, 192n85, 196n35 Nietzsche, Friedrich, 37–38, 42–43, 44–45, 46–47 Nuland, Sherwin, 87, 95   Obama, Barack, 4–5 opt out, 23, 24–25, 48, 68, 118, 122–29, 136–37. See also exit Orange is the New Black, 110–11   PAD (physician-assisted dying), 89–90, 99–101, 154n79, 181n44, 183n70 Palin, Sarah, 4–5 palliative care, 23, 28, 89–90, 96, 98–99, 179–80n32 Patient Self-Determination Act, 96 Peacock, Doug, 107, 123–25, 127, 134, 180–81n43 Perkins, Henry, 94 Pettit, Philip, 50–51 physician-assisted suicide. See PAD (physician-assisted dying) Piper, Mark, 53–54 Plato, vii, 1, 92 post-traumatic stress disorder (PTSD), xii, 8, 16, 23–54, 108–30, 131, 134, 136, 186n15, 186n18, 186–87n19, 187n20, 187–88n24, 189n38, 189n43, 190n49, 190n54, 190n58, 191–92n76 Povinelli, Elizabeth, 2–3, 149n8 pregnancy, x–xii, 21, 61–62, 63–64, 72–73, 77–78, 83–84, 166n8, 170n37, 172n53 Purple Heart, 108, 110–11   Ralston, Aron, 71 Rankine, Claudia, 12–13, 148–49n6 Rasmussen, Claire, 11, 22, 152n41 Rawls, John, 31, 51–52, 54–55, 163n79 resilience, 112, 120–23, 126, 169n27, 187–88n24, 190n58

202

Index

resistance, 8, 11, 16–17, 22, 28–30, 66, 68, 84–85, 93–94, 99, 101–2, 104–5, 118, 119, 121–24, 127–28, 130, 132–33, 134, 135, 136, 141–42 Robin, Corey, 18 Rose, Nikolas, 64–65, 67–68, 88–89, 169n27, 176n11 Rothblatt, Martine, 95 Rousseau, Jean–Jacques, 21–22, 57   Sacks, Jonathan, 34 Sandel, Michael, 50–51, 108–9 Scarre, Geoffrey, 101–2, 183n71 Schlosser, Joel, 12–13 Schroeder, Pat, 76 self–determination, vii–viii, xi–xii, 2, 3–4, 8, 9, 12–13, 20, 21–22, 24–25, 26, 27– 28, 31, 52, 53–54, 62, 63, 67–68, 76, 79–83, 84–85, 91–92, 96, 102, 104–5, 117–18, 122, 132–33 Seligman, Martin, 121 Seri Indians, 123 servile bondage, 95–96 Shalev, Carmel, 94 Sheehan, Cindy, 15–16 Siebers, Tobin, 6 Simonds, Wendy, 3, 20, 98–99 Skinner, Quentin, 50–51 Smith, Michael, 50–51 Snow, Nancy, 33–34 Standing Rock Sioux Indian Reservation, 14 Stoljar, Natalie, 52–53, 55–56 subject, the, viii–ix, 51–52, 105–6, 123, 183n71 subjection, 7–8, 26, 36–37, 48, 84–85, 109, 132–33, 134, 155n87, 177–78n19 subjectivity, 8–9, 11–12, 16, 17, 18, 21–23, 25, 67–69, 84–85, 91–92, 103–6, 117–18, 122–23, 128–29, 131, 133–34, 135–36, 144–45, 176n11, 183n72, 191n75, See also citizen-subjectivity suicide, vii–viii, ix, 89–90, 120–21, 124– 25, 135, 178n21, 179n31, 190n51 Sulik, Gayle, 96, 154–55n81, 155n84 systems-challenging praxis, 66, 93–94, 119, 128, 131

Tarasoff, Lesley, 72–73 Taylor, Charles, 50–51 theory critical race, ix–x, 1–2 feminist, ix–x, 1–2, 16–17, 21–22, 26, 46, 51–54, 61–62, 148–49n6, 149n7, 163n78, 163n82 political, vii, 2–3, 15, 18, 23, 27, 32, 35, 38–39, 42–45, 61–62, 77, 84–85, 91–92, 102, 135–36, 149n8, 151n29, 153n62, 155n89, 162n70, 163n82 Thoreau, Henry David, 13–14, 140–42 Tocqueville, Alexis de, 2–3 Tronto, Joan, 19, 92, 148n5 Tsing, Anna Lowenhaupt, 18–19, 31, 154n71 Turner, Jack, 13–14, 140–41 Tyler, Bonnie, 107–8   VA (Department of Veterans Affairs), 16, 23–24, 28–29, 107, 120–21, 123–24, 185n4, 186n18 veterans, xii, 8, 16, 23–24, 28–29, 107–30, 136, 138, 178n21, 180–81n43, 185n4, 185n13, 186n14, 186n18, 186–87n19, 187n20, 187n23, 188n26, 188–89n37, 189n38, 189n41, 189n45, 190n51, 190n54, 191n66, 191n75 virtue ethics, ix–x, 23, 33–34, 38–39, 162n70 voice, 29–30, 42–43, 137–41, 142–43, 195n26   Warren, Mark, 137, 139–40, 195n26 Welch, Sian, 69–70, 169n33 Wells, William, 140–41 White, Stephen, 25, 142 Whitworth, Sandra, 116–17, 189n42 Whyte, Jessica, 19 wilderness immersion therapy, 28–29, 127–28, 136 Williams, Serena, 63, 148–49n6 Wolin, Sheldon, 9–10, 151n34 Women’s March on Washington, 14 Wool, Zoë, 43, 119, 185n9, 188–89n37, 189   yoga, 28–29, 123, 126–28, 136, 192n85 Young, Iris Marion, 2–3, 16–17