Introduction: #IllnessPolitics

This book explores illness and disability in action on social media, analyzing several popular hashtags as examples of how illness figures, conceptually and strategically, in recent U.S. politics. I demonstrate how illness politics (or #IllnessPolitics, as I have used the term on social media) is informed by, intersects with, and sometimes stands in for, sexual, racial, and class politics. This project is connected to a growing body of work that explores forms of health activism and disability and illness politics as central, not peripheral, to both mainstream and radical politics,1 as well as work on the dynamic intersection of media and health and health activist practices.2 Illness- and disability-oriented hashtags serve as portals into how and why illness and disability are sites of political struggle.

I first take up two hashtags—#SickHillary and #TrumpIsNotWell—used in the U.S. presidential election campaigns of 2016 and 2020, respectively, to demonstrate how illness politics has operated in recent mainstream electoral politics where illness functions as a metaphor for a candidate’s supposed unfitness for office. I then explore illness and disability activist hashtags—#ADAPTandRESIST, #CripTheVote, and #TimeForUnrest—as examples of counterportals into other forms of illness-thought-activism in time.3 My last chapter on #LongCOVID doesn’t conclude so much as foreground the ongoingness of illness politics as an enduring struggle against ableism and stigma and for care, access, and full citizenship and personhood.

My work centers illness as a category of analysis. In my first book, Treatments, I investigated the ways that illness narratives can be read as symptomatic texts of our time in two respects: as texts that literally describe symptoms (and struggle with finding a form to describe the affective and physical experience of symptoms) and as texts that describe illness as an event that goes beyond any individual’s experience and account of it, reflecting wider cultural categories including race, gender, class, and sexuality. At the center of Treatments is the figure of the politicized patient and the practice of illness politics. I locate the emergence of this figure around 1980 and discuss Sontag’s Illness as Metaphor (1978) and Audre Lorde’s The Cancer Journals (1980) as hinge texts between the women’s health movement of the 1970s and AIDS activism of the 1980s.

I ended Treatments with what I called an “ethics of failure” because I wanted to make a case for the ubiquity and importance of failure in our scientific, political, and artistic practices and to explore how our subjectivities, research methods, and objects of study are constituted by our failures as much as by our successes. In my formulation of this ethical practice, failure becomes not an ending but a beginning of other ways of seeing and being in the world. My second book, Indirect Action, ends in a different, if related, register with a discussion of what is most often taken as an image of success, ACT UP’s phrase and campaign Drugs into Bodies, a slogan and struggle that transformed the experience and event of AIDS and other illnesses in very concrete, material ways. As I argued in Indirect Action, Drugs into Bodies is a complex and ambivalent remainder of the radical success of treatment activism. In a moment in which drugs are delivered as the sole therapeutic solution to all problems—medical, psychological, and social (drugs have even become the solution to drug problems)—the phrase and practice encapsulates a very particular conjuncture of illness-thought-activism in neoliberal times. We are now living the side effects of the success of treatment activism that called for Drugs into Bodies. I wondered: Could it have been and be otherwise?

In thinking about how a phrase like Drugs into Bodies encapsulates a conjuncture of illness-thought-activism in a particular time and place, I realized that hashtags on social media operate in a similar way in the present moment: Drugs into Bodies becomes #DrugsIntoBodies. Hashtags allow for both the condensation and extension of politics in action. In this project, the hashtag-as-portal also serves as a method for analyzing illness politics today. #SickHillary and #TrumpIsNotWell are portals into how Hillary Clinton in 2016 and Donald Trump in 2020 were alleged to be unfit for the presidency, and thus the focus is on the individual political actors named in the hashtags (that Hillary Clinton is always “Hillary” and Donald Trump always “Trump” in these hashtags also indicates the sexual politics at work in mainstream American politics).

Other hashtags point to current counternarratives of illness and disability in action, and in the rest of the chapters I take up recent examples of what we might call, following anthropologist Elizabeth Povinelli, “alternative social projects” to the neoliberalization of healthcare and the relentless ableism of public life.4 These alternative social projects are all represented by hashtags on social media, and thus the hashtags themselves function to both encapsulate and further multiply and expand the spaces and temporalities of illness and disability in action. The three activist hashtags I discuss—#ADAPTandRESIST, #CripTheVote, and #TimeForUnrest—provide passageways into a multiplicity of forms of illness and disability in action at this time. The hashtags allow people to find an action in a particular moment, but they also operate the other way, extending the action—and thus creating new instantiations of the action in time and space. In her rich portrait of the disability justice performance project Sins Invalid, Shayda Kafai uses Mia Mingus’s concept and practice of “leaving evidence” to describe how Sins Invalid’s work “leaves evidence so that others in search of community and homecoming can find their way.”5 I argue that hashtags are also a way of leaving evidence, as Mingus herself understands, having started the #AccessIsLove hashtag in collaboration with Alice Wong and the Disability Visibility Project.

As Jackson, Bailey, and Welles note in their book #Hashtag Activism, “digital activism is sometimes considered less valid than direct action and is mistakenly regarded as in competition with it.”6 One example of such an argument is Malcolm Gladwell’s piece “Small Change” published in The New Yorker in 2010. In his usual habit of making big claims based on rather flimsy research, Gladwell argues that the key to effective activism is “strong ties” with “critical friends.”7 He takes the lunch counter sit-ins that began in Greensboro, North Carolina, in 1960 as his example of how activism emerges, spreads, and brings about change. He notes a change from the 1960s to the present, claiming, “Where activists were once defined by their causes, they are now defined by their tools.”8 This is a huge generalization, of course, that fails to understand that Civil Rights activists in the 1960s also used tools and had media and communications strategies. It also relies on a very ableist attitude about what activism looks like.9 As Jackson, Bailey, and Welles argue, hashtags can be a conduit for social change, especially because they provide a mechanism for generating interest in activism and connections between activists. Neither Gladwell nor Jackson, Bailey, and Welles mention illness or disability activism on social media. Thus, Illness Politics and Hashtag Activism adds to the literature on social media and activism by critiquing the ableism of dominant images of activism. This critique shows that disabled and chronically ill people who may be limited in their capacity to move freely and tirelessly through the world can still do politics and be activists. Indeed, online spaces create connections among sick and disabled people and allow for greater participation in social and political life. Or, as Kafai puts it in a chapter on Sins Invalid’s practice of “Crip Kinship and Cyber Love” through regular conversations and events available through Facebook and on their website and YouTube channel, “There is radical possibility in this broadening of space and crip home, in understanding that crip-centric liberated zones can be intentionally created anywhere.”10

I locate this project in the most general sense at the intersection of the interdisciplinary fields of critical health studies, disability studies, and digital humanities. More specifically, the project draws on recent work in disability studies that looks at the ableism in contemporary political cultures and activist movements. An early influential piece is Johanna Hedva’s essay “Sick Woman Theory” from 2016, which begins with an image of Hedva in bed listening to a Black Lives Matters protest near her house in Los Angeles in 2014: “Attached to my bed, I rose up my sick woman fist, in solidarity.”11 Hedva discusses Hannah Arendt’s formulation of the political as requiring a person’s presence in public, noting that such a definition means “whole swathes of the population can be deemed a-political—simply because they are not physically able to get their bodies into the street.”12 Following Judith Butler’s work on vulnerability and resistance, which I will also draw on in chapter 5, Hedva proposes “Sick Woman Theory” as an articulation of an anticapitalist form of protest that begins with and enacts care for oneself and others.13

In the preface to their collection of essays Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha provides another counterimage to ableism, as summarized in the preface’s title: “Writing (with) a Movement from Bed.”14 In theories and practices of disability justice, the bed, according to Piepzna-Samarasinha, is a site not only of rest and containment but of creativity and activism, and dreaming becomes both a personal and collective experience.15 As they explain, “Disability justice allowed me to understand that me writing from my sickbed wasn’t me being weak or uncool or not a real writer but a time-honored crip creative practice.”16 Along with, or emerging from, the sickbed, Piepzna-Samarasinha documents the multiple sites of disability justice in action, including online and social media sites:

Much of our coming together has been through zines, online disabled QT/POC communities, Tumblr and blog and social media posts, or through three people getting together at a kitchen table or a group Skype call to start to hesitantly talk about our lives, organize a meal train, share pills and tips, or post the thoughts about activism and survival we have at two in the morning. It is underdocumented, private work—work often seen as not “real activism.” But it is the realest activism there is. This is how disability justice art and activism change the world and save lives.17

Part of this practice of documenting the underdocumented is making connections with disabled artist-activists across space and time. In their essay “So Much Time Spent in Bed: A Letter to Gloria Anzaldúa on Chronic Illness, Coatlicue, and Creativity,” Piepzna-Samarasinha describes the bed as “the nepantla place of opening.”18 They conjure meeting Anzaldúa in an intimate encounter “in the chronically ill sickbed heaped with pillows where we both spend so much time.”19 In this “sexy” image, writing in bed creates access to a dream time that is based on reciprocity and interdependence. The question of what “real activism” is and looks like in practice, and where it happens, is important to this project and all my work. How we do illness and disability and/as politics is not one thing, and the hashtags I discuss in this book show this multiplicity in action.

Along with recent work in disability studies and documenting disability justice in action, Illness Politics and Hashtag Activism also connects to recent work on digital health humanities and the relationship between health and media, as well as, more generally, analysis that considers practices of political activism on social media.20 By analyzing the politics of illness and disability on social media, I hope this book will also serve as a resource for assessing and counteracting the ableism that currently infuses politics in the United States and as a guidebook for activists looking for models for doing #IllnessPolitics on social media.

In each chapter, I describe how the projects behind the hashtags emerged and operate on social media and in the wider world before considering what they tell us about the conjuncture of illness-thought-activism in the present. In general, I am interested in the question: Why does illness and disability in action take these forms in this moment? More specifically, I ask: What spaces do different projects occupy and/or attempt to create? What temporalities are at work in relation to different illnesses and illness politics? What kinds of subjects are produced by various forms of illness and disability politics?