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 nitude, much political theory begins with loss. Loss animates it as an enterprise and forms its problematic.
Peter Euben, “ e Politics of Nostalgia and eories 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- ve-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 o ce, knitting loudly and feeling proprietary over su ering, and also hoping that no one could see me.
When someone you love commits suicide, people sometimes ask, “Were you surprised?” I used to nd this question so personal, odd, and aggressive. Did I know it was coming, and still fail to prevent it? A er some time, however, I came to think about it di erently. 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
illness for many years already, who has recently undergone his rst 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 stu , 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,
ere is losing, as we know, but there is also the transformative e ect 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 nds oneself foiled. One nds 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 nally fed up with grieving, a er months or years of feeling bone-weary, unreliable, cranky, bored, six inches o the ground as we oat 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 ve 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
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. e 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 gured 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, o en 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,
Preface and, as the chapters ahead make clear, healthcare under the pressures of neoliberal medicalization.
Some time a few years a er my brother’s death something in me shi ed, 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. ere are no silver linings here, and the conditions for making such a psychic shi are, I fully acknowledge, extensive and entail all sorts of privilege (therapy, unconditional love, time o 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. e 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. e 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
against your will, but also brags about what she’s read.) My brother was working on nding a psychiatrist, but without much luck (thanks, Foucault). As for myself, I had been to therapy a er 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- ve, 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 rmly committed to respecting my autonomy as to be useless! e 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 e 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. e 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. e 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 ne in the end. Yet I le 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 rm commitment to leaving the choice entirely up to me. Dude, just tell me what to do! e quest for agency (autonomy) and deference to authority (which calls for a certain humility) seemed to me in
that moment not to be opposites, but to be fundamentally interdependent. at hunch, that nagging embodied sense, became the ideational basis for this project.
Grief I have known, and birth I have done ( rst in a hospital, and then in my living room). e other chapters of this book are personal in di erent ways. Hospice for the slow dying of long-term illness is something that, perhaps strangely, I now nd myself hoping to be lucky enough to experience with my parents (and maybe, way down the road, myself). Yet I am terri ed of wading into those waters unprepared as my parents age. ey might prefer a quick death, but sel shly 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 o en 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 unquali ed 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
is 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 o ce when I was adjuncting at Lin eld College and asked if I wanted to co-author something on su ering, Socrates, and Judith Butler, and got me to nish 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 bene ted 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
Curzer, Ben Hu , 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.
e Association for Political eory has supported my ourishing and this project over the past years, by including me as a conference participant (where I bene ted from amazing co-panelists and discussants, and got to know senior people in the eld 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. ey are critical readers, teaching mentors, and engaged citizens; they are con dantes, skiing partners, surrogate aunties/babysitters, and advocates for (my) pay equity. eir support of me as a parent, scholar, and activist over the past decade has been profound. ank 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 Du , 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 a er my brother died, and making me jog my way through grief. anks 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 Kirchho ; 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. ank 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 nished 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
Wol 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 nally, 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 e 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, e Will to Empower1
e 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.
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 o en 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
ese 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 signi cance 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 a rming a certain ideal of selfpossession, or the idea that “my body is mine,” as crucial for emancipatory projects.7
e 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 con gurations of the body that Elizabeth Povinelli calls “en eshments”—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 e disembodied rational, autonomous subject of liberalism lent itself well to the democratic individualism that Tocqueville pointed to in the
1830s, when he wrote about Americans that “ ey 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. ese 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 nd 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? rough detailed examinations of birth, death, and illness, I argue that re gured 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 en eshed 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. e 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 eshy 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 di erently, I argue here that while corporeal experiences of certain kinds might diminish our sense of ourselves as
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 is 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. is 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. is 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 a er 9/11; a loss that “we” in America all shared, albeit in di erent ways, and that the global community endeavored to share with us through the statement “We are all America.” In theorizing responses
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. is is true partly because many of the losses (physical and nancial) will take place out of the public eye, in hospital beds and accounts payable o ces, 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, su ered 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 o a life that comes into contact with, or even is deeply de ned by, risk, exposure, potential pain, disability, and the navigation of an o en inhospitable world. Arguably, the intensity of the disavowal of dependency in much of the contemporary debate about healthcare testi es to the
realization, on some level, that being of “sound mind and able body” may be eeting 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 gure 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. us, to shore up my point about disavowed dependency and the discourse of “choice and control,” even if my own choices are “right” and e ective, they are only a small part of my life story.
Sometimes a story follows a tidy narrative about a normative lifeline. But o en, 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 rst at birth, then death, and nally 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 rst 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 speci c, 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
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 o en surgical) and dying will take (and thus allow) some time, resulting from diseases that, once “terminal,” are now more o en “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 o en 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 brosis, 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
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 e 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. rough 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. is 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 gure here as sites of embodied political learning, or what I suggest is a kind of “citizenship training.” ese 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 esh 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 speci cally to race and gender, justice and power; and the personal is political, the basic premise of
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. is wayof-being is de ned 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 selfde nition 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 a ects 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 is 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 gure of homo politicus discussed by Barbara Cruikshank in e Will to Empower and
detailed further by Wendy Brown in Undoing the Demos. 30 is is a gure 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 de ne “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 uno cial 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. e 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 e 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, o en it is during purportedly private and individual experiences of vulnerability and dependence that we nd 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.
Re ecting 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 ese 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 o en messy “forms of quotidian resistance,” may have e ects on our citizen-subjectivity. In e 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 signi cance for the individual but are o en 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 e ects 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 di erent forms of political subjectivity.”41 Sometimes being interpellated as a “citizen” with very limited means and modes of participation, as I suggest o en happens in healthcare, can awaken versus inhibit our citizen-subjectivity.
Of course, the kind of embodied experience I consider here di ers 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
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 e ect 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 de ned 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 is imaginary is so pervasive, Schlosser argues, that even critiques of citizenship remain captured by it. In contrast, he reads Rankine as re guring 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 ght.”46 e basic premise of citizenship as self-activation must be challenged by the reality of embodied injury. Schlosser is drawn to Rankine because she o ers 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 o en 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 ght” means something di erent, even, from a hospital bed or a wheelchair (particularly as
the prejudices and inequalities attached to race, class, gender, and ability are o en intensi ed 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 di erent people in di erent contexts to di erent extents, I aim both to defend its value and show that it is o en 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 gure 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 a er. For as the next section shows, drawing on Jack Turner’s work, I aim to highlight how awakenings to citizensubjectivity are not rst and foremost cognitive events, but rather begin with our lived corporeality as it exposes us to others in quotidian and epic ways.
Political Awakening
ere 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 shi s in consciousness through the reinvigoration of the term “woke,” mobilized, for example, by the NAACP in their 2016 get-out-the-vote campaign, “staywokeandvote.” is 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 o sleep” back through Baldwin, Ellison, Douglass, oreau, and Emerson, exploring how awakenings are typically less a matter of gaining knowledge one lacked, and more aboutnally 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,
