reading notes: illness politics as a practice of love

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.]

Reading notes: learning to listen

[Front and back cover of Amina Cain’s A Horse at Night: On Writing. Art on the cover: a painting by Augustus Leopold Egg, The Traveling Companion, 1862. Cain describes “an almost perfect symmetry between” the two girls “who look like sisters” in the painting. “One girl sleeps while the other reads,” Cain writes. “Each is resting in her own way. All of us need this kind of rest” (89).]

For me, Twitter was a space for connecting with others through reading. One of my favorite things about Twitter was that I encountered the thought and writing of countless others—both well-known and less so. I also used it as a space to post notes as I read. Sometimes I would start a thread about a book I was reading and post quotes or thoughts periodically while I was reading. In other words, I would pause in my reading to post a quote or comment on Twitter, as though I was jotting down a thought in the margins of the book or in a notebook. Notation was for me an affordance of the platform. Recently, for example, I read the revised and updated edition of Saidiya Hartman’s brilliant, groundbreaking Scenes of Subjection, which took me several days to read. I updated a Twitter thread while I read, which wasn’t a review of the book, but a practice of notation—a practice the book also enacted by including notations Hartman created in collaboration with Cameron Rowland. 

[The new edition of SCENES OF SUBJECTION includes notations that Hartman created with Cameron Rowland, including this one titled “Black Antagonism” “in homage to the sweetgrass basket makers of Edisto Island & what they are owed.” Image description: A black ink spiral bisected by a horizontal line on a gray white woven basket background. The title BLACK ANTAGONISM is at the top & the word PRACTICE is on the left at the opening of the spiral & the words GATHERING (above the line) & CRIMINALITY (below) are on the right. Notations from the text are contained in the spiral. At the center of the spiral/basket is the word Flight.]

Yet, like others, I have found Twitter to be a much less satisfying platform for this kind of engagement in recent months because of Elon Musk’s takeover and the changes he has made to the algorithm, verification process, content moderation, and accessibility. Not to mention his own promotion of right-wing conspiracy theories and fascist and transphobic content on the site. Many people I enjoyed following and engaging with have left the site and moved to other platforms like Mastodon. As of now, I don’t plan to leave, and I still haven’t set up a Mastodon account. Nonetheless, I have been trying to create a new way to post reading notes. Although it doesn’t feel as spontaneous as Twitter did, I thought I might play with using this blog for reading notes (it could also be that this is my first and last reading notes post!).

[Image description: Two books stand next to each other on a white shelf. On the left, Amina Cain’s A Horse at Night and on the right, much thicker and larger, Ruth Ozeki’s The Book of Form and Emptiness. ]

What have I been reading? Right now, I have two books on the go—one long, one short. That’s not quite right because I started and finished the short book—Amina Cain’s A Horse at Night: On Writing—in a single day—yesterday. Thus, I read a whole other book while reading the long one—Ruth Ozeki’s Book of Form and Emptiness. Starting and finishing a book while reading another book is not unusual; reading happens in multiple temporalities and spaces. Some books are gobbled up and others are savored slowly and still others are struggled with or put aside and returned to (or sometimes never returned to). Ozeki’s book is a book about the agency of things, including books, and there are books within the book that is The Book of Form and Emptiness. So, it feels right that I read a small book about reading and writing while reading a big book about a book becoming a book. In a section on how and when plants appear in fiction, Cain discusses Amanda Ackerman’s The Book of Feral Flora as not simply about plants but as including pieces “written by plants” (112). Cain writes that “the flowers in the book call out to other flowers, repeating their names, making contact, one to the other. Ackerman calls out to them too” (112). This echoes Ozeki’s story of a book being told from the perspective of the book itself as an object with agency to think and feel. Both texts—one thin and one thick—present practices of writing and reading as a kind of attentiveness to objects—that is, writing and reading as forms of listening. As Benny, the protagonist in Book of Form and Emptiness says, “Things speak all the time, but if your ears aren’t attuned, you have to learn to listen” (3). Reading notes are one way of learning to listen.

Teaching illness & the politics of care

Fall 2022

This coming semester I’ll be teaching two undergraduate classes on illness and the politics of care: Documenting Mental Illness and Life/Death | Health/Justice. The syllabuses for these classes are below. In both classes, I work with comics and graphic narratives (and many other genres and forms). Check out my piece on Comics as Pedagogy: On Studying Illness in a Pandemic. Despite a push to return to “normal,” we’re still in a pandemic, which impacts our experiences in the classroom. I am committed to working together with students to create a flexible and inclusive space for learning that takes seriously the themes of these classes: the need to think creatively about our practices of healing and spaces of care. This includes the space in which we study mental health and illness in a pandemic.

Portals into a field: connecting across & through keywords/images in graphic medicine

2022 Graphic Medicine Conference, Chicago

Friday, July 15 | 3pm

Briana Martino and I will moderate a panel at the 2022 Graphic Medicine Conference in Chicago that will showcase a variety of contributions to our Keywords/images in Graphic Medicine book project. This project is a verbal and visual resource into the formal elements, theoretical concepts, practical and pedagogical tools, and health and illness politics of the field of graphic medicine. We are inspired by the work of literary and cultural studies scholar Raymond Williams and his book Keywords: A Vocabulary of Culture and Society, a text that articulates the politics of such a vocabulary. As the keywords framework risks reducing graphic medicine to only one component of the form, we have coined the term keyimages to indicate the significance of images, separate from and in relation to words, in the emergence and enactment of the field of graphic medicine. Keyimages are visual tropes and iconography used by comics artists in their work, as well as aspects of the comics form that help create the vocabulary of graphic medicine. Or, in relation to the theme of this conference, keyimages create a connective tissue between graphic medicine practitioners across disciplines and domains (the arts, healthcare, academia, etc.). Our project demonstrates how graphic medicine/illness comics are symptomatic texts of our time: that is, texts that literally describe symptoms (and struggle with finding a form to describe the affective and physical experience of symptoms), and 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.

Panelists & their keywords/images: 

  • Savita Rani: PERFORMATIVE
  • Kay Sohini: WINDOWS + CLIMATE
  • Emmy Waldman: OCD
  • Brian Fies: CANCER
  • A. David Lewis: CANCER 

Virtual presentations (available on the Graphic Medicine Conference website):

  • benjamin lee hicks: VISIBILITY + CARE
  • Luke Jackson: IVF
  • Kara Pernicano: EMOJI
  • Amritha Radhakrishnan: CHRONIC PAIN
  • Justin Wigard: UNFLATTENING

EYES keyimage collage includes images from (clockwise from top left): Jaime Cortez, Sexile; Èlodie Durand, Parenthesis; Nick Sousanis, Unflattening; David B. Epileptic; Emil Ferris, My Favorite Thing Is Monsters.

Life/Death | Health/Justice

Fall 2021

[Image description: Screen grab from the film Wit. The camera looks down from the ceiling of Dr. Bearing’s hospital room. She lies unconscious on her bed at the center of the shot. Her nurse Susie leans over her and holds her head gently in her hands.]

One thing that can be said for an eight-month course of cancer treatment: it is highly educational. I am learning to suffer.

                        —Prof. Vivian Bearing in Margaret Edson’s Wit

In fact, the Hmong view of health care seemed to me to be precisely the opposite of the prevailing American one, in which the practice of medicine has fissioned into smaller and smaller subspecialties, with less and less truck between bailiwicks. The Hmong carried holism to its ultima Thule. As my web of cross-references grew more and more thickly interlaced, I concluded that the Hmong preoccupation with medical issues was nothing less than a preoccupation with life. (And death. And life after death.)

                        —Anne Fadiman, The Spirit Catches You and You Fall Down

To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled. Disability is mutable and ever-evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.

                        —Alice Wong, Disability Visibility

I conceive of care as the way someone comes to matter and the corresponding ethics of attending to the other who matters.

                        —Lisa Stevenson, Life Beside Itself

In this course, we will explore big questions about life and death and health and justice. We will investigate these questions through several case studies, moving from experiences of ill and disabled bodies in the world to the way global events and structures affect those experiences, and back again. Our first series of case studies will look at various relationships within the institution of medicine: between doctors and patients, patients and nurses, doctors and nurses, etc. As we analyze these relationships, we will consider the way knowledge, power, and choice gets expressed in and through these relationships. Our second series of case studies will expand out from specific relationships within medicine to larger global events and structures that affect the health of peoples throughout the world, historically and in the present. In the most general terms, we are interested in being, doing, and becoming in relation to illness and disability 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, to address why some people are at greater risk for illness and premature death than others. We will also explore disability justice as a practice of care. Some of our organizing questions for the semester include: Why and how are illness and disability political? What factors impact health? What constitutes good care? How can we improve access and deliver better care? 

Life/Death | Health/Justice syllabus

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

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.