HIV/AIDS

reading notes: illness politics as a practice of love

| ldiedrich

I am trying to write these reading notes quickly, almost as I read. Unlike on twitter, this format/platform feels less like notation and more composed like a blog post or review. One strategy is to post before I finish something, as I did on twitter and then update the post with additional thoughts. Reading notes as process notes, perhaps? Basically, I’m still figuring this out.

Right now, I am reading Steven W. Thrasher’s The Viral Underclass, which I would describe as an articulation of illness politics as a practice of love. I use “articulation” in Stuart Hall’s double sense of the term: as both a form of expression where the form of expressing matters and as linkages between certain elements and conditions that are possible but not inevitable or essential.

[Photo of Steven W. Thrasher’s book The Viral Underclass: The Human Toll When Inequality and Disease Collide. In the middle of the cover is a red COVID-like virus (with spikes). At the center of the virus is a black human head in profile that appears to create ripples outwards to the edge of the virus.]

Thrasher’s chapter “From Athens to Appalachia” links AIDS activism and care practices in Greece and West Virginia through stories of how a viral underclass is produced and maintained in these places, such that the underclass is a space as much as an individual or group of people. But Thrasher also shows, importantly, how people living in these conditions respond to their situation in creative and caring ways. Thrasher makes connections between people and communities and forms of activism—for example, from harm reduction programs responding to an HIV outbreak in Athens after the Greek economic crash to programs in West Virginia responding to outbreaks of HIV, Hepatitis C, and overdose that were modeled on the Athens programs. I’d add another historical connection, which is that Greek immigrants in the early 20th century emigrated to West Virginia to work in the mines and steel mills of the Ohio River valley, including members of my Greek grandmother’s family who ended up in Wheeling. The anti-immigrant, anti-trans, and HIV stigma that led to the violent death of Greek AIDS activist and Zak Kostopoulos (aka drag queen: Zackie Oh) shows how such stigmatizing violence must forget this other history of Greeks on the move searching for a better life amid economic hardship and political conflict.

Thrasher warns us in the introduction that many of the protagonists of his stories of the viral underclass will die, telling us to “consider grabbing some tissues” (18). The portraits here are deeply moving. Thrasher has a way of capturing community activists in action by providing touching details about their character and work along with careful analysis of the structural violence they are up against. I needed those tissues when I read Thrasher’s chapter on Lorena Borjas, a trans activist from Jackson Heights, Queens who was HIV positive and worked for decades providing resources for Black and Brown and trans sex workers in Queens to help them practice safer sex, beat addiction, avoid arrest, post bail, and get free from oppressive situations. Thrasher shows how Borjas’s activist philosophy and practice was to show up for others and convince others to join her in showing up for others. Showing up for and with others sounds simple but is of course incredibly difficult to sustain. Yet, Borjas sustained this practice of love right up until she became sick with COVID in March 2020. Thrasher tells the heartbreaking story of her illness and death, noting “There was a sad irony at the end of her life. Lorena always showed up with people.” “But at the end of it all,” he continues, “except perhaps for the respiratory technician and nurses on duty as she drew her final breaths, Lorena Borjas was physically alone. [Her partner] Chaparro, [friend] Cecilia [Gentili], [fellow trans activists] Chase [Strangio], [Lynly] Egyes, all the thousands of people she’d given condoms and syringes and food to on Roosevelt Avenue—none of them could be with her to hold her hand in the final transitional moments of her earthly journey” (149). Many tributes followed Borjas’s untimely death at just 59, including from Alexandria Ocasio-Cortez, who lauded Borjas as the “mother of the trans Latinx community in Queens” (149). Thrasher’s work also situates Borjas’s activism in Queens, while linking it beyond Queens in time and space in and through his book about The Viral Underclass. This is what I call #IllnessPolitics—a way of countering what Thrasher calls “viral vulnerability” through transhistorical and transnational connections between multimodal forms of activism and movements.

[Photo of Lorena Borjas smiling and seated with her hands folded on her lap. She is wearing a beautiful bright red shawl and colorful kimono-like dress with a yellow and white flower in her hair. Photograph by Guillermina Hernandez / Courtesy TransLatin@ Coalition.]

Drawing Health Activism: Illness politics and practices of care in graphic AIDS narratives

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Conjunctures zoom talk at Catholic Pontifical University, Porto Alegre, Brazil, May 28, 2021

Here is the video of my talk. Thanks to Professor Nythamar de Oliveira for the invitation and thanks to Camila Barbosa for translating the text into Portuguese (see below). A version of this piece will eventually be published in the Handbook of Health and Media edited by Lester Friedman and Theresa Jones forthcoming from Routledge.

traducao-lisa-diedrich-_desenhando-ativismo-na-saude_-politicas-de-doencas-e-praticas-de-cuidado-em-narrativas-graficas-de-aids_Download

Illness-Thought-Activism: From HIV/AIDS to COVID-19

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Gran Fury, SILENCE=DEATH, 1987, neon

I am reprising my seminar, Illness-Thought-Activism: From HIV/AIDS to COVID-19, this semester at Stony Brook as part of the first-year seminar program. This is a version of the course I taught in the Narrative Medicine MS program at Columbia in October. I think it’s kinda relevant.

Here’s the course syllabus and course description:

illness-thought-activism-syllabus-lds-102-sp21Download

This course will explore the conjunction illness-thought-activism in time. In particular, we will focus our investigations on the medical, political, and aesthetic responses to the HIV/AIDS and COVID-19 pandemics. We will use the historical example of the emergence of HIV/AIDS and the increasing politicization of the illness as a lens through which to examine the ongoing contemporary emergence of COVID-19. We will explore how these illnesses are treated in a variety of texts—medical, media, and activist documents, as well as literature, film, comics, and other forms of creative expression. In the most general terms, we are interested in being, doing, and becoming in relation to illness experiences and events, therapeutic thought and practices, and clinical and caring institutions and spaces. We will explore biopolitical issues, including the social determinants of health and structural violence that means some people are at greater risk for illness and premature death than others. Some of our organizing questions for the semester include: why and how is illness political?; what factors impact health?; what constitutes good care?; and how can we deliver better care? 

Drawing queer love: Illness politics and practices of care in graphic AIDS narratives

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I’m working on my paper for the Graphic Medicine Conference in Brighton. The theme of this year’s conference is “Que(e)rying Graphic Medicine.” To get in the spirit of the theme, check out the book title in this panel from Alison Bechdel’s Dykes to Watch Out For from 1997. Over 20 years ago, Bechdel was already Que(e)rying Everything, so Graphic Medicine is a little late to the party!

Here’s a description of the larger project, though I probably will only have time to talk about Making It, Dykes to Watch Out For, and Taking Turns at the conference.

One definition of queer, according to the OED, is “not in normal condition, out of sorts; giddy, faint, or ill.” Thus, among other things, queer is an ill feeling that undoes identity categories. If we consider queer not in terms of a particular sexual identity—that is, not as a form of being but as a mode of doing—then we can expand the affective and effective possibilities of the concept. What might it mean to do queer rather than be queer, and how might this doing create new forms of not only queer sexuality but also queer love? In this paper, I explore these questions in particular within the domain of the illness politics and practices of care that emerged out of the response to AIDS as represented in hybrid verbal and visual narratives from the 1980s to the present: Cindy Patton and Janis Kelly’s Making It: A Woman’s Guide to Sex in the Age of AIDS(1987); Alison Bechdel’s comic strip Dykes to Watch Out For(1983-2008), David Wojnarowicz, James Romberger, and Marguerite Van Cook’s comic 7 Miles a Second(2012); Jaime Cortez’s Sexile(2004); and MK Czerwiec’s graphic memoir Taking Turns: Stories from HIV/AIDS Care Unit 371(2017). Patton and Kelly’s guide to safe sex incorporated comics drawn by Bechdel in the style and tone of her comic strip Dykes to Watch Out For, and Bechdel’s strip, which began its long-syndicated run in 1983, dealt with safer sex and AIDS activism on several occasions. 7 Miles a Second was also a collaboration and documents Wojnarowicz’s experiences of hustling, homelessness, art, and illness in New York City in the 1970s and 1980s. Sexile is an HIV-prevention publication created for the AIDS Project Los Angeles and Gay Men’s Health Crisis and features the story of Adela Vásquez, a Cuban transgender person and AIDS activist who came to the US as part of the Marielito boatlift in 1980. Taking Turns draws on Czerwiec’s own experience as a nurse on an AIDS unit in Chicago, as well as her interviews with other practitioners and patients. I argue that these graphic AIDS narratives draw queer loveby depicting a multiplicity of practices of care, art, and politics.

On David Wojnarowicz, politics, and gestures

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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.

Comics & Medicine freshman seminar

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I’m teaching a freshman seminar on Comics & Medicine in the Science and Society undergraduate college at Stony Brook University this spring.

I’ve been working on the syllabus and here’s the almost-final draft:

Comics and Medicine syllabus

This is the description of the course from the syllabus:

In recent years, comics and graphic narratives have become a popular and innovative form for telling auto/biographical stories in a medium that artfully combines words and images. Our course will focus on one exciting sub-field of the form known as graphic medicine, which explores the conjuncture between comics and clinical medicine. We will discuss how comics and graphic narratives have become important resources for communicating a range of ethical and clinical issues related to the experience of illness, and how this hybrid verbal/visual form helps medical practitioners, patients, families, and caregivers creatively reimagine the boundaries of “health,” “illness,” “life,” and “death.” We will investigate the ways that graphic medicine/illness narratives can be read as symptomatic texts of our time in at least 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 particular individual’s experience and account of it, reflecting wider cultural categories, including race, gender, class, and sexuality.

The image on the left is from David Wojnarowicz, James Romberger, and Marguerite van Cook’s 7 Miles a Second and the image on the right is from MK Czerwiec’s Taking Turns: Stories from HIV/AIDS Care Unit 371. Both are portraits of the artists: in one, Czerwiec stands before and is dwarfed by one of the huge Keith Haring murals at Rush University where Czerwiec studied nursing; in the other, Romberger and van Cook portray Wojnarowicz at work spray-painting a canvas. Above the artist and his canvas, an image of Wojnarowicz’s lover Peter Hujar, who died of AIDS in 1987, looks down. After I initially mis-characterized this image as a Wojnarowicz self-portrait, Romberger kindly wrote to inform me that he and van Cook created it “informed by specifics that I knew well as his friend: the layout of his apartment and that he had that particular photo of Peter on the wall, that he is working on that particular hopeful painting he did of a cosmic scientist, and doing it wearing a protective mask, necessary for a person with AIDS working with aerosol paint and which also comments ironically on the text about him breathing the air his dead friends cannot.” The caption at the top is from Wojnarowicz’s writing and begins, “I’m acutely aware of myself alive and witnessing.”

These are two of the texts we will explore in Comics & Medicine. There is so much to say, as these two images of a page and panel suggest.

 

Cinema and Precarity: Treatment, Risk, Trauma

Image | | ldiedrich

Looking forward to the NWSA Conference in Milwaukee. I’ll be presenting on a panel entitled Cinema and Precarity: Treatment, Risk, Trauma with Kristin Hole, Dijana Jelaca, and Victoria Hesford.

Here’s the panel description:

This panel brings together papers that explore multifold representational economies of screen precarity in a variety of political, cultural and historical settings. We address the Distortion/Dispossession theme of the conference in examining how controlling images of precarious lives (Butler 2004) are reiterated or countered in various films. From the AIDS crisis and recent engagement with treatment activism, to challenging notions of bodily sovereignty through film language, to female directors’ take on gender and trauma in the aftermath of a violent ethnic conflict, this panel engages in the question of what political and ethical challenges screen precarity circulates culturally. Does screen precarity, as a representational frame, inevitably fetishize bodies in physical and psychic pain, or does it also challenge political complacency (Butler 2009)? How does screen precarity, even when purportedly about past events, inevitably address present-day anxieties, and moreover, how does it stage a screen enactment of “fantasy echoes” (Scott 2001) across temporal and spatial boundaries? In examining how various forms of screen precarity might challenge standard approaches to political agency, the panel pays particular attention to the ways in which screen illness, disability and trauma circulate affective economies (Ahmed 2004) that might constitute an archive of feelings (Cvetkovich 2003) envisioned outside of the temporal and spatial frameworks of neoliberalism.

My paper, Screening Treatment Activism: The Precarious Temporo-Politics of Illness, analyzes the phrase and campaign “Drugs into Bodies” as expressing an ontology of the late capitalist present, a condensation of the complexities of the interaction of medicine, politics, and the multiple and conflicting demands of different temporalities: the emergency time of immediate action and the precarious time of reaching for new forms and phrases to articulate what is and is not yet coming into being, indirectly. I discuss two recent examples—How to Survive a Plague and Dallas Buyers Club—of screening treatment activism, in order to suggest both the ways treatment activism is depicted on screen, as well as what else these representations screen from our view.

Figure A.2

[The viewer is made to feel like a voyeur, as she watches at very close proximity the bare-chested man insert the drip into a line right above his left nipple. Screen capture from How to Survive a Plague (David France, 2012)]