On March 17, 2023, I gave a virtual talk as part of the Conceptualizing Vulnerability series organized by Pramod K. Nayar, who is the UNESCO Chair in Vulnerability Studies at the University of Hyderabad. This presentation is part of a book I am working on called #IllnessPolitics. I first introduce the larger project before presenting material from one of the chapters. #IllnessPolitics 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 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, as well as work on the dynamic intersection of media and health and health activist practices. Illness- and disability-oriented hashtags serve as portals into how and why illness and disability are sites of political struggle.
In the larger project, 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 counter-portals into other forms of illness-thought-activism in time. In these various hashtags of illness and disability in action in the present moment the violence and exclusions of recent policies are revealed. Yet, these examples also reveal a multiplicity of practices—of vulnerability and heroism, confrontation and compromise, exhaustion and endurance—in an ongoing struggle for care, access, and full citizenship and personhood.
In this presentation, I focus on the multiple temporalities of chronic fatigue syndrome (CFS) through an analysis of CFS experiences and events as documented in Jennifer Brea’s film Unrest (2017) and through the hashtags #TimeForUnrest and #MillionsMissing. Brea’s film shows illness and illness politics as operating biopychosocially across different spaces and temporalities, including on social media, which becomes a site of a kind of embodied assembly where people gather while remaining at home and in their own beds. In her book on precarity and public assembly, Notes Toward a Performative Theory of Assembly, Judith Butler explores the “question of whether the destitute are outside of politics and power or are in fact living out a political agency and resistance that expose the policing of boundaries of the sphere of appearance itself” (78). I will also explore this question of how those deemed outside the limits of the political—in this case the sick and bedbound—nonetheless, as Butler posits, “break into the sphere of appearance as from the outside, as its outside, confounding the distinction between inside and outside” (78). Brea’s film and related hashtags on social media create the conditions of possibility of this breakthrough into the sphere of appearance as a mobilization of vulnerability, despite, or perhaps because, such action exhausts—literally, in the case of CFS—any one individual’s capacity to appear.