Illness (in)action: Multiple Temporalities of Chronic Fatigue Syndrome

Looking forward to the Society for Literature, Science, and the Arts (SLSA) Conference in Toronto this weekend (November 15-18, 2018).

I will present my paper “Illness (in)action: Multiple Temporalities of Chronic Fatigue Syndrome” as part of a panel organized by Vincent Bruyere titled “Out of Mind/Out of Time/Out of Sync: Emergent Models of Agency in Disability Studies.” The other presenters are Sofia Varino and Rebecca Garden, so you know it’s going to be good! Our session is from 3:30-5:00 on Saturday, November 17 in the Casson Room in the Toronto Hilton.

Here’s the abstract for my paper:

In this paper, I explore 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). I argue that the film shows illness and illness politics as operating biopychosocially across different temporalities. First, I discuss what I describe as the historical persistence of hysteria, a diagnostic category replaced by conversion disorder, but nonetheless haunting the phenomenological experience of illnesses, like CFS, without (yet) known biological causes. I also discuss how the film attempts to capture the experience of enduring embodiment, as extreme fatigue and sensitivity to light, sound, and surroundings makes CFS a condition of unrest—a disturbed and uneasy state that is at once physical, social, and political. Early in the film, as Brea films herself struggling to crawl across the floor to her bed, she anticipates a question that might be on the viewer’s mind: “Why would I film it?” Her answer—“Because I think someone should see this”—suggests both a politics of visibility and a politics of endurance, or the politics of making endurance visible. I argue that this film, along with other recent examples of illness and disability politics, challenges in important ways what activism and the figure of the activist look like. By connecting with people with CFS online, Brea not only documents their experiences with CFS but also seeks to politicize the many people with CFS who she describes as missing in action from society and the public sphere. With the film and hashtag #TimeForUnrest, she demonstrates illness (in)action as a kind of unrest cure.


On David Wojnarowicz, politics, and gestures

This is the final weekend for the exhibition at the Whitney Museum of American Art of the work of David Wojnarowicz, “History Keeps Me Awake at Night.” I can’t recommend the show enough, especially as a resource for apprehending the sexual, racial, and illness politics of the present. I am reblogging a post from the University of Minnesota Press blog that I wrote just before the exhibit opened, which draws on my snapshot of Wojnarowicz in my book Indirect Action. I have also written about 7 Miles a Second, a comic about Wojnarowicz’s life that was a collaboration between Wojnarowicz, James Romberger, and Marguerite van Cook on the Critical Posthumanism genealogy webpage.

On Wojnarowicz, politics, and gestures:

Next week, the Whitney Museum of American Art in New York will launch a major exhibition of the work of David Wojnarowicz, “History Keeps Me Awake at Night.” It notes that Wojnarowicz was “queer and HIV-positive” and an “impassioned advocate for people with AIDS,” who would die of AIDS in 1992 at age 37. Publicity for the exhibition also indicates concern that because of Wojnarowicz’s association with the AIDS crisis and the culture wars of the 1980s, his work is “too frequently treated as a footnote” to this historical moment. I am excited about the retrospective at the Whitney, both as an opportunity to celebrate Wojnarowicz’s work as more than a footnote and as an opportunity to return to a particular moment in time that still reverberates in the present.

In my work, I am interested in the conjunction of illness-thought-activism in time. Or, put another way, I am concerned with illness and disability in action in particular times and places. My recent book Indirect Action explores this conjunction in the period just before and after the emergence of HIV/AIDS in the United States, challenging the frequently repeated origin story that locates AIDS activism in particular and health activism more generally as emerging with the formation of the AIDS Coalition to Unleash Power (ACT UP) in 1987. Attempting to demonstrate the conceptual and practical uses of indirection, I conceived of the overall form of the project diagrammatically as a spatial network of interlinked experiences and events of illness, with shorter chapters, which I call snapshots, as nodes in the network that condense and encapsulate the overall structure. The image that helped me conceive of this form was the cover of a xeroxed catalog for David Wojnarowicz’s show In the Shadow of Forward Motion at P.P.O.W. gallery in New York City in 1989. Thinker/writer/activist Félix Guattari contributed a foreword of sorts to the catalog, and his name, along with Wojnarowicz’s, is on the cover of the catalog.

In 1989 Felix Guattari contributed a foreword to a xeroxed catalog for a show of David Wojnarowicz’s In The Shadow of Forward Motion at the P.P.O.W. gallery in New York City.

The cover image on the catalog, a detail from Wojnarowicz’s Sex Series, is a copy of an x-ray photograph of a sexual encounter as if viewed through a microscope or pinhole. What we see is difficult to discern, and we must peer closely at the image to see there are two men in the scene; as microscoped, x-rayed, and then photocopied fragment, sex is not simply impersonalized but depersonalized. The sex is both there for all to see and difficult to discern. Our own voyeuristic desire is captured in the pinhole’s structuring call to look. The image vibrates eerily on a black background while the text boxes—“David Wojnarowicz,” “In the Shadow of Forward Motion,” and “Notes by Felix Guattari”—float in white rectangular blocks above and below the image. The catalog materially and conceptually links the names, words, and ideas of Guattari and Wojnarowicz, even though the two men never met.

A name not on the cover of the catalog is that of the photographer, Marion Scemama, who collaborated with Wojnarowicz and was a friend of Guattari’s; it was Scemama who brought the two men together at the very end of the first decade of AIDS, in 1989, three years before both of their deaths, only weeks apart, in 1992. In an interview with Sylvère Lotringer, the founder of Semiotext(e), a cultural theorist and archiver of French theory in the United States, Scemama describes how Guattari’s involvement in the catalog came about and the pleasure Wojnarowicz felt in having his work linked with Guattari’s. Because Guattari couldn’t come to New York to meet Wojnarowicz or see his work in person, Guattari’s “David Wojnarowicz” is, Scemama believes, a “little superficial” but nonetheless important as “a gesture.” “Gesture” is a key word and concept in Wojnarowicz’s work and features frequently in his diaries. Wojnarowicz’s concept of the gesture emerges not only from his practices of art and writing but also from his practices of sex. For Wojnarowicz the gesture is a link between word and image, writing and painting, sex and intimacy. For example, in a diary entry in September 1981, Wojnarowicz describes picking up a guy in a park in the East Village and going for coffee with him. As they make “slow spare conversation,” Wojnarowicz explains, “I knew I wanted to lie down with him but nothing was mentioned. I wondered how it would be approached, if at all. What words, what gestures.” Or as Agamben puts it in his “Notes on Gesture,” “The gesture is the exhibition of a mediality: it is the process of making a means visible as such.” The snapshots in my project are meant to function like gestures: they are intertexts and interimages that make a means visible—here, linking sex, illness, art, and politics before and after AIDS.

In his superficial gesture, Guattari argues that Wojnarowicz reinvents the “inspiration of the great 60s movements” in order to “transcend the style of passivity and abandon of the entropic slope of fate which characterizes this present period.” A superficial gesture, then, links Wojnarowicz back to the social movements of the 1960s, and forward or, perhaps we should say, in the shadow of a forward motion to “a singular message that allows us to perceive an enunciation in process,” as Guattari puts it. The enunciation in process catalogs macroevents, like the worldwide devastation of AIDS, the detritus of capitalism, and the expropriation and exploitation of land once inhabited by Native Americans. In his writing and visual art, Wojnarowicz demonstrates the metamorphosis of all things—rusted-out factories, defunct machines, and insect shells are placed side by side as images of “what history means reached through the compression of time.”

My own superficial and small gesture redraws a line between Guattari and Scemama and Wojnarowicz. The redrawing of the line is not meant simply as a reminder that politics is about the personal, in the sense that through personal relationships we make politics, although of course personal relationships are an important aspect of the practice of all politics. Rather, what I want to think about are those figures who act as relays between people, places, ideas, and entire movements: Scemama between Guattari and Wojnarowicz but also Guattari and Wojnarowicz between the radical psychiatric politics of the 1960s and 1970s and forms of AIDS activism in the 1980s. Like Wojnarowicz, I am interested in “what history means reached through the compression of time,” a snapshot or a xeroxed catalog linking two names, word and image, sex and love, art and politics. Doing politics is about all kinds of further gestures: personal and impersonal, large and small, profound and superficial.

Illness Politics: independent living vs. personal responsibility

We are witnessing competing narratives of illness politics at work as Republicans attempt to repeal and replace the Affordable Care Act. What illness looks like and how we do illness politics is contested terrain. Consider recent protests on Capitol Hill against the GOP’s Better Care Reconciliation Act draft bill. Led by disabled activists who are members of ADAPT, a disability rights organization known for its direct action tactics, the protests garnered mainstream and social media attention as images of police removing activists in wheelchairs from Senate Majority Leader Mitch McConnell’s office circulated widely. Other images showed police separating ADAPT activists from their wheelchairs to arrest them. Such images of the use of force against a vulnerable population helped drive home ADAPT’s message that this bill was a matter of life and death for some. As one sign proclaimed, “Medicaid is life” for many people with disabilities. Activists like Stephanie Woodward, Gregg Beratan, Anita Cameron, and Bruce Darling put their vulnerable bodies on the line in order to generate media coverage about what was at stake—in the most material terms—in the ongoing debates about healthcare in America.

Stephanie Woodward being arrested at Senator McConnell’s office

The protests on Capitol Hill were just one of many demonstrations organized by ADAPT in what they are calling a #SummerOfADAPT. As Congress recessed for the 4th of July holiday, ADAPT activists across the country sought to communicate directly to GOP senators at their home offices about the devastating impact of Medicaid cuts. In Denver, activists conducted a sit-in at Senator Cory Gardner’s office for 58 hours in an attempt to tell the senator their concerns. Senator Gardner never met with the activists, and they were eventually arrested. Activist Carrie Ann Lucas was charged with trespassing and, because she refused to help police operate her motorized wheelchair, she was also charged with interference. Lucas’s noncooperation fits into a long history of nonviolent civil disobedience as an effective form of embodied resistance. In this case, her chair is not simply an instrument used by her body, but part of her body that went limp as the police tried to remove and arrest her.

Carrie Ann Lucas: Without Medicaid I could not live in the community.

ADAPT and its direct action political tactics are not new. Although many origin stories of this radical form of health activism start with the founding of the AIDS Coalition to Unleash Power (ACT UP) in New York City in 1987, ADAPT pre-dates ACT UP by at least a decade. While many have made direct links between ADAPT and ACT UP, taking a longer view of health activism suggests ACT UP is a link between earlier health activist movements, including those associated with the women’s liberation movement, Civil Rights groups like the Black Panther Party and the Young Lords, anti-psychiatry, and environmental justice. This longer view would also include the Independent Living Movement (ILM), which advocates for disabled people to live in their communities not in nursing homes or other institutions, to make decisions about their own lives and care, and in general articulates an everyday ethics of self-determination.

The ILM was started by Ed Roberts in Berkeley in the early 1970s, but the movement quickly spread beyond Berkeley to other less counter-cultural milieus. The second Independent Living Center was the Atlantis Community founded by the Reverend Wade Blank in Denver in 1975. ADAPT emerged out of this local Denver disability activist environment that Atlantis cultivated and first garnered widespread media coverage in 1978 for protests calling for wheelchair-accessible public transportation. The ADAPT acronym initially stood for American Disabled for Accessible Public Transport. As the group broadened the political issues it engaged in, ADAPT maintained the acronym but adapted its meaning. Now ADAPT stands for American Disabled for Attendant Programs Today. The alternative meanings of the acronym reflect the importance of both freedom of movement in the public sphere and access to good care and assistance in both public and private spheres as necessary to enable full citizenship and participation for disabled people.

Just two days after the dramatic protests on Capitol Hill, Vice President Mike Pence articulated an alternative version of illness politics, emphasizing personal responsibility and the market as keys to good health and healthcare. Pence gave his speech in Colorado Springs at the 40th anniversary celebration of the Christian multimedia organization Focus on the Family. Like ADAPT, Focus on the Family emerged in Colorado in the late 1970s, but rather than drawing inspiration and political tactics from the new social movements of the late 1960s and early 1970s, Focus on the Family offers an alternative conservative cultural politics that goes hand-in-hand with neoliberal economic policies seeking to privatize public services, policies that gained steam in the 1980s and are predecessors of many of today’s austerity measures. In this privatized and privatizing cultural politics, the family, not the community or state, is expected to care for its own, and women are expected to function as primary carers in families. In this context, Pence used illness as metaphor for individual and social weakness, and personal responsibility and free-market competition became the solution to problems of bodily, and by extension, moral weakness.

The rhetoric of personal responsibility denies the fundamentally interdependent condition of society. It relies on a simplistic eugenics logic that suggests whole groups of people might be deemed unfit to participate and left to die. The ADAPT activists know much is at stake in this battle over healthcare. For these activists illness and disability are not metaphors. They are real material conditions of life that require creative responses at the level of both the individual and society. They challenge us to adapt—not simply our bodies and our selves, but our society—so that everyone can participate in political and social life to the fullest extent possible. What we are seeing in this #summerofADAPT is democracy in action around the question of what kind of society we want—one that would enable the many to flourish and live valuable lives, or one that protects and enables the few?