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

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.

Comics and Medicine 2017: Unpacking Building Stories

As anyone who reads my blog will know, one of my favorite annual conferences is the Comics and Medicine Conference organized by the Graphic Medicine collective. The reason I love this conference is that it brings together a diverse mix of people and projects: comics artists, health practitioners, and academics who teach and write about comics and graphic narratives. My recent work explores the conjunction of illness, thought, and activism in different times and places, and the Comics and Medicine Conference has shaped how I approach this conjunction.

This year the Comics and Medicine Conference is in Seattle and the theme is Access Points. The conference artwork was designed by ET Russian, artist, performer, and creator of the Ring of Fire zine, which is a remarkable document of queer/crip as a way of life.

I am presenting a paper called “Unpacking Building Stories at home and in the classroom.”

Chris Ware’s Building Stories is all about access, not as a condition of being but as a becoming that is enacted in everyday life through the interaction between bodies and environments. In this presentation, I consider Ware’s “building stories” as his title indicates we might, with building read both as: 1. a verb, emphasizing how stories are built and crafted; and 2. an adjective, suggesting the stories of a building, not simply those stories of its inhabitants, but stories that the building itself tells with a kind of agency that Ware seeks to give the reader access to through graphic form as much as through narrative. Building Stories tells the story of an unnamed disabled woman with a prosthetic leg, but the objects and spaces that surround and sustain her have a kind of agency too.

We can’t read Building Stories in a conventional way. The stories come in a box that we explore by unpacking its contents. The box contains several cloth-bound and stapled books, differently shaped and sized pamphlets, posters, a large folded board that opens into quadriptych of the building and its occupants, etc. The phenomenology of “reading” building stories is very different from the phenomenology of reading a typical book or comic book. In the process of exploring the contents, our taken-for-granted reading practices are challenged; we are made to feel both disoriented and invigorated in the process of unpacking. Building Stories was one of the required texts in my Cultures of Dis/ability class this past spring, and thus, I also discuss the phenomenology of unpacking Building Stories in relation to teaching the text. In teaching Building Stories I had students explore the text at home and in small groups in the classroom in relation to a larger discussion of how dis/ability is enacted in different spaces. In reading Building Stories in the classroom, we asked questions about access in terms of both the spaces that facilitate (or not) inclusion and participation and in terms of the stories we build in and about those spaces.