At some point, it became a mark of privilege to talk about “self-care.” Once unknown outside the niches of trauma therapists and burned-out activists, the concept has become so mainstream that it’s ...

At some point, it became a mark of privilege to talk about “self-care.” Once unknown outside the niches of trauma therapists and burned-out activists, the concept has become so mainstream that it’s now regularly used as shorthand for celebrity beauty routines. Meanwhile, corporate elites promote self-care among employees in hopes of cutting their losses in productivity and health care costs. You, the worker, are now responsible for your well-being—never mind how your working conditions might adversely affect it.

However, like many concepts that were popularized by activists championing the rights of women, people of color, the queer community, and the working class, self-care has been co-opted by market forces that paper over its primary purpose. Initially designed to guard against the burnout that is endemic to grassroots organizing, the practice extends far beyond skin serums and bath bombs. In fact, self-care can even reach beyond the self: the Black Panthers’ “survival programs” focused on community well-being, for example, and social workers have employed regimens to fend off compassion fatigue.

But what about when care doesn’t become communal, or can’t? What about when care becomes draining for one or more of the people involved? What happens to care when community breaks down?

As new books by Anne Boyer and Leah Lakshmi Piepzna-Samarasinha reveal, illness and disability, in particular, present needs for bodily care that produce both love and alienation, intimacy and isolation. When state care is inadequate and oppressive, and community care is complicated by ableist stigma and emotional turmoil, how can we avoid relegating care to the individual self?

For Boyer, author of the memoir The Undying, one answer is to turn to history. When the acclaimed poet and essayist is diagnosed with triple-negative breast cancer at the age of 41, her friends initially come through: they accompany her to scary appointments, for example, and crowdfund money for her groceries. But as chemotherapy engulfs her daily life with full-body pain and altered cognitive function, it doesn’t take long for friends to drop off the radar, and for coworkers to start avoiding eye contact.

As her personal world becomes depopulated, Boyer turns to a long lineage of sick writers, fashioning a millennia-spanning community of bedfellows, from the Greek orator Aelius Aristides to the English poet John Donne, from the 19th-century novelist (and nonanesthetized mastectomy survivor) Fanny Burney to the postmodern punk writer Kathy Acker. Literature bears witness to pain, for Boyer, in a way that her flesh-and-blood community struggles to do.

In this sense, Boyer does practice “self-care”: along with more mundane daily maintenance, she reads and writes with these sick literary ancestors. Yet this form of self-care is not a therapeutic practice—the kind sold by influencers and brands—but a necessary habit she is forced to adopt, when care from others becomes scarce.

But even as the narrator feels utterly alone, her identity as a patient is still constituted by care work: that of doctors and friends, yes, but also of the mostly women workers who collect information about her body and enter it into medical data management systems. In this context, care becomes detached from its moralized associations with love and affection, and refers to a more complicated set of possibilities specific to her particular biotechnological moment.

“The word ‘care’ rarely calls to mind a keyboard,” Boyer writes, and yet the nurses and technicians who measure and chart the body’s data are unequivocally considered care workers. Boyer does not simply valorize this labor as feminine, and therefore radical; nor does she condemn it as medical-industrial surveillance. Yet in balancing both concerns, Boyer’s focus on “paraprofessional” care workers is unprecedented in the history of thinking about what makes a person into a patient. These significant players in clinical encounters are typically left out of analyses of the medical establishment, which tend to focus on the more easily delineated power dynamics between patient and physician.

Populated with fraught and uneasy relations inside the clinic, Boyer’s first-person perspective is a refreshing alternative to, on the one hand, the glut of mainstream cancer narratives that fetishize individual heroics and tragedy, and, on the other, the depersonalized thinking of illness theorizers like Susan Sontag. (As Boyer points out, Sontag “does not write ‘I’ and ‘cancer’ in the same sentence.”)

In other words, even as The Undying is a profoundly lonely book, whose core is the sickbed—a place hauntingly transformed from the site of erotic communion into that of solitary suffering—Boyer knows that illness, or pain itself, is not inherently an isolating experience. What is isolating is modernity’s prevailing understanding of pain and illness as existing beyond language, and thus as experiences that are impossible to communicate.

Consequently, the book’s most daring, and long-overdue, contribution to the canon of illness literature is the idea (contra Elaine Scarry, Hannah Arendt, and many others) that pain can indeed be shared through language. Boyer’s lack of support during her illness does not stem from friends and family being unable to look her pain in the face. Rather, the issue is that capitalism gives everyone a thousand reasons not to try. The landscape of illness rhetoric produced by corporate pink-ribbon peddlers and inspirational clickbait mills provides no intellectual framework with which to connect to others through pain, illness, and loneliness.

For Boyer, then, the question of whether pain can be communicated moves rapidly into a directive that it must be communicated. To believe that pain is unspeakable and unseeable is to give permission for it to be put out of view.

Boyer is thus determined to portray her pain in language, through a stunning and, yes, painful collage of poetic approaches. These include, for instance, a pain scale composed of lines of Emily Dickinson’s poetry, and a gorgeously collectivist “clinic fable” about the shared pain of chemotherapy ports.

The Undying is an unforgettable artifact of physical suffering that refuses the myopic individualism of classic cancer narratives. Instead, the book insists that the sharing of pain is deliberately denied to those who are sick and alone. Otherwise, Boyer argues, those who are sick and alone might organize against the conditions—environmental, medical, social—that made them so. This intervention is as virtuosic as it is devastating.

At the same time, Boyer’s powerful ideas—how we limit language’s ability to communicate pain, as well as how we alienate and obscure medical-institutional care workers—can’t fully explain the problems of community care that arise in this book. In fact, if we look beyond Boyer’s framing of the debate, another, perhaps larger problem comes into view: the fact that illness and disability are generally assumed to be emergency situations, and care a temporary obligation. To tackle this other problem requires the insights of disability justice.

As disability activist Mia Mingus has defined it, disability justice refers to an intersectional movement focused on “moving away from the individualized and independence-framed notions of access put forth by the disability rights movement and, instead, working to view access as collective and interdependent.” The fact that Boyer’s critique of the gendered and capitalist ideology around cancer never fully meets up with this framework feels like a missed connection: one of disability justice’s primary objectives is to alleviate problems of community care, exactly the kinds of problems that made Boyer’s experience so agonizing.

In Care Work: Dreaming Disability Justice, activist and artist Leah Lakshmi Piepzna-Samarasinha addresses the flaws of what she calls the “crash and burn emergency model” of care. In this regrettably common scenario, a person has a sudden accident or diagnosis, and their loved ones go into crisis mode: organizing emergency fundraising and round-the-clock physical presence and emotional support. This, of course, is the model of community-based caregiving that failed Boyer, and that most people are familiar with.

The problem is that, after a short period of neglecting their own needs in service of the crisis, the small circle of primary caregivers inevitably burns out and begins to withdraw. Meanwhile, as Boyer notes with appropriate fury, medical professionals fail the sick person by assuming they will receive such care: assuming, for example, that they have family to drive them home or help them change their clothes after surgery.

Outside of disability-centered communities, most people struggle to imagine any way out of this bind, at least as long as the medical-industrial complex reigns. But Care Work shows that there are other options that disabled people have been practicing for quite some time. These are options that could benefit everyone, if only they hadn’t, as Piepzna-Samarasinha puts it, “blanked out on listening to [disabled people] for years when we’ve been trying to talk about access or our lives.”

We need the perspectives of both Boyer and Piepzna-Samarasinha. We need to see the pain of illness, and to decenter pain as the singular, defining characteristic of care.

Drawing mostly on an impressive personal archive of disability activism and artwork, from the 1990s to the present, Piepzna-Samarasinha details crip “care webs,” in which disabled communities established mutual aid networks outside medical and state apparatuses. (“Crip,” here, is a reclamation of the pejorative term “cripple,” which some disabled people have embraced in the same vein as, and in intimate relation to, how many have embraced the term “queer.”) In these networks, primarily conceived of and organized by queer and trans people of color, the need for care is a normalized, ongoing reality for everyone involved. Consequently, the everyday work of care invites the possibilities of intimacy, humor, and pleasure as much as it does pain and difficulty. And so, when crises do arise, they often do not require the scrambling for resources typical of the emergency model. Instead, the necessary support structures, such as rides to doctor’s appointments and regular home check-ins, are already in place.

Though these efforts have all been somewhat utopian in their ambitions, Piepzna-Samarasinha is nevertheless frank about their real-world difficulties: namely, that some people’s care needs will likely conflict with others’, giving rise to feelings of betrayal and unequally distributed work.

One model that she found to avoid some of these pitfalls was Sick and Disabled Queers (SDQ), a massive Facebook group for people with disabilities, who were committed to responding to one another’s care needs whenever possible. “SDQ was inherently very sustainable,” Piepzna-Samarasinha writes, “because it wasn’t just you trying to ask your crew of six local people for help—you could reach out to thousands of people across the world, and someone would always be up, someone would always have cash or capacity or energy to talk you through whatever it was.”

It’s hard to read Care Work without thinking back, with retroactive clarity, to why any care networks you’ve been a part of were so difficult. Of course things fall apart when a small group of loved ones is doing work that could be shared by a whole community. Of course people behave badly, feel betrayed, are betrayed.

Even for many of us who’ve both needed and given care beyond the limits of the medical industry and the state—because, let’s be clear, disabled and sick people are often caregivers, too—it would require a massive paradigm shift to enter into a world in which communal care and disability are the norm. This would mean a world in which even majority able-bodied communities are already deeply invested in stepping up to do care work, such that a major diagnosis or accident doesn’t throw everyone into crisis mode.

This realization is both heartbreaking and energizing. What would have to happen to bring a world of crip-centered care into existence for everyone, not just those who are tapped into certain kinds of radicalized networks already?

We can start, along with Boyer, by changing the way we think about how pain gets communicated. Pain, as we know, permeates communities: we need to become better equipped to face it. Pain, as we also know, magnifies the historically specific ways in which humans are interconnected and made vulnerable.

But at the same time that we must take pain seriously, we must also change the way we think about care, as primarily organized around pain and obligation. Even when it is “complicated” and “genuinely fucking hard,” as Piepzna-Samarasinha puts it, care can also be “a collective responsibility that’s maybe even deeply joyful.”

Ultimately, we need the perspectives of both Boyer and Piepzna-Samarasinha. We need to see the pain of illness, and to decenter pain as the singular, defining characteristic of care.

Perhaps one upside to the mainstreaming of self-care is that it’s already made this paradoxical balance a habit for many of us. You do the work of healing yourself, even as you know it won’t eliminate the pain of a traumatic event, an illness, an exploitative job, or structural oppression. You do it because the work enables other things, like rest and pleasure. Likely the only way to disrupt the commodification of care into corporate taglines is to extend this imperative beyond the individual.

For all their differences, The Undying and Care Work both point to this need to take self-care beyond the self on many levels, from institutionally guaranteed and compensated care services to interpersonal networks. We must imagine how much more we can communicate when we give and receive care. We must do the work of healing each other, even and especially when it won’t eliminate the pain.

This article was commissioned by Sharon Marcus.

Featured image: Two Person Hold Hands (2020). Photography by NEOSiAM 2020 / Pexels