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.

Call for Proposals: Keywords and Keyimages in Graphic Medicine

Edited by Lisa Diedrich and Briana Martino

We invite submissions for the edited collection Keywords and Keyimages in Graphic Medicine, which is under advance contract with Penn State University Press’s Graphic Medicine series. This project will offer 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 in particular his book Keywords, a text that articulated the politics of the vocabulary of culture and society. 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. We want both comics artists and scholars of visual culture to contribute keyimages in order to provide specific examples but also a general formal method for reading the aesthetic, conceptual, and cultural work of the image in and for graphic medicine. By foregrounding keywords and keyimages together, our book will provide instruction on how to read both/and: both words and images, both visual condensation and verbal elaboration, both sequentially and simultaneously. We believe that demonstrating this both/and reading practice will benefit artists, cultural critics, health practitioners, as well as people dealing with the experience of illness in their everyday lives. 

While we think Keywords and Keyimages in Graphic Medicine will be of interest and use to a wide variety of health practitioners and health humanities scholars, we also think the project will appeal to readers and practitioners across a spectrum of fields and backgrounds, including comics studies, visual arts, cultural studies, disability studies, critical medical studies, and science and technology studies. For those both familiar with and new to the form, we hope this project will be a guide on what to look for and how to read graphic medicine/illness comics. Our book will demonstrate 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 particular individual’s experience and account of it, reflecting wider cultural categories, including race, gender, class, and sexuality.

We welcome proposals from comic artists, health practitioners, and/or academics. We are seeking proposals from comics artists to share keyimages in their own work and write a short 150-word statement about the keyimage. We are also looking for 300-word proposals for keyword/keyimage analysis papers from scholars/health practitioners. We are hoping to include around 50 keywords and keyimages. Final submissions will be 500-2000 words. Please send queries and submissions to Lisa.Diedrich@stonybrook.edu and Briana.Martino@simmons.edu.

Deadline for proposals is September 30, 2021

Mirror keyimage collage.

Keywords and keyimages: An A-to-Z sampling (not a comprehensive list!!)

Annotation, assemblage, affect, abstraction, alzheimer’s, amplification

Border, balloons, break, balance, bleeds

Caption, comix, cure/curation/curating, capsule, composition

Diagnosis, desire, drawing, doctoring, dot, direction, dimension

Experience, empathy, episode(ic), eyes

Form, feelings, frame, fold

Gutter, graph

Haptic. hand, hatching

Icon/iconography, images, ink, illness

Juxtaposition

Kinetic, knowledge(s)

Line, layout

Mirrors/mirroring, manga, media, movement, mimesis

Nib, nestedness, negative space

Onomatopoeia, OCD

Panel, page, perspective, photo-

Queer

Representation, realism, repetition

Subject/subjectivity, space, sequential art, splash, sound effect, sketchbook, shape, scale, stability

Treatment, trauma, time/temporality, technology, therapy
Unconscious, unflattening

Verbal and visual, voice)

Witness/witnessing, windows

X-ray, X chromosome

Y chromosome, yoga

ZAP!, zebra (diagnosis)

Eyes keyimage collage.

Disregarding the health of others

In a press release announcing that her husband had tested positive for COVID-19 following the lockdown during the pro-Trump mob’s attack on the Capitol, Massachusetts Representative Ayanna Pressley did not mince words. She called out her “callous Republican colleagues” for refusing to wear masks in the “crowded and confined space.” Other lawmakers who were exposed and infected during the lockdown also called out their colleagues for their “callousness” and dangerous “inability to accept facts” on the benefits of wearing masks to contain the spread of coronavirus. Pressley expressed anger at her colleagues’ “arrogant disregard for the lives of others” and linked such disregard to the “criminal negligence of the current administration in responding to the crisis” that had, at the time of her statement, “claimed the lives of over 380,000 Americans.” 

CNN's Jake Tapper reports. 
Published at: 06:06 PM, Mon Jan 11 2021

Pressley’s angry denunciation got to the crux of the issue: a willful disregard for the health and lives of others has formed the basis for denying and downplaying the deadly and disabling effects of COVID-19. Since the beginning of the pandemic, and encouraged by President Trump and other Republican lawmakers, we have witnessed people proudly and nonchalantly express their utter disregard for the suffering of others, especially elderly and disabled people, and the people who care for them. By refusing to wear masks and practice social distancing, people have sought to demonstrate—to show by action and display of feeling—how much they don’t care that people are dying in unprecedented numbers.

Disregard is both a verb and a noun. It refers to an action (“to pay no attention to” and “to treat as unworthy of regard and notice”) and a condition (“the state of being disregarded”). Disregard is not a passive thoughtlessness; rather, it suggests willful inattention. One chooses to ignore the suffering of others, both because one can and because doing so makes that suffering invisible. Pressley added the modifier “arrogant” to amplify the point she was making about the insouciant attitude of her Republican colleagues. But all disregard is an expression of power that implies arrogance.

In her book Regarding the Pain of Others, published in 2003, a year before her death, Susan Sontag identified the many opportunities “for regarding—at a distance, through the medium of photography—other people’s pain” as a key component of modern life. Sontag was of course renowned as one of our foremost critics of the photographic image and its circulation, as well as for her polemic against illness as metaphor, among other critical interventions. It is instructive to return to Sontag’s work in the present moment in which images are readily and easily manipulated, and in which denialism and disinformation circulate widely through social media. Sontag was interested in how we see and consume the pain and suffering of others. She was also interested in what images of death we see and don’t see. 

Susan Sontag, Regarding the Pain of Others

In her earlier essay on the cultural politics of illness, Sontag analyzed the phenomenon of illness as metaphor for individual and social weakness. Sontag’s short polemic chronicles a long history of the metaphorical uses of illness in literature, popular culture, and politics. Her motivation for writing Illness as Metaphor was not simply to explore a changing cultural and political landscape of illness. Instead, Sontag proposed to elucidate the uses of illness as metaphor with the goal of purifying the experience of illness of metaphorical thinking. For Sontag, this was the “most truthful way of regarding illness—and the healthiest way of being ill.” The act of regarding (showing interest, care, consideration, respect, and esteem), and the possibility of mis- or dis-regarding, links Sontag’s early work on illness with her later work on the pain and suffering of others.

In the COVID-19 pandemic, what Sontag described as regarding at a distance has been necessitated by the highly contagious character of the virus. Because of this, hundreds of thousands of people have died in isolation from their loved ones. Our hospitals are over-flowing with COVID-19 patients, even as their suffering remains largely invisible or highly mediated by audio-visual technologies like Facetime and Zoom. Healthcare workers have become witnesses to extreme suffering and death in a way that is not typically part of their everyday responsibilities. Yet the trauma our healthcare workers have experienced is also ignored and even denied. Passively regarding at a distance has turned into an active disregarding of the health and care of others. 

Indeed, this disregard for the health and care of others has become politicized. In the COVID-19 pandemic, disregard has been wielded and weaponized. Images of Republican members of Congress refusing to wear masks in the lockdown at the Capitol, even when asked to do so, enacts this politics of disregard: I do not have to care about you. The act of not caring and the image of mocking disregard work together to communicate a political message: See me not care about others.

The mask is a visible sign of regard for others. It communicates an understanding that one’s body is not autonomous from but interdependent with the bodies of others. That some would fixate on the requirement to wear a mask as somehow restricting one’s bodily freedom is a most cynical disregard for the specific practices of public health and healthcare in particular and a parsimonious notion of the social contract more generally. The politics of disregard suggests that seeing oneself in relation to others is a sign of weakness. This is a debate about the kind of society we want to live in: one that prioritizes the care of others, especially the most vulnerable, versus one that politicizes disregard. As Representative Pressley made clear, the effects of such a politics of disregard are criminal and deadly.

Keywords and Keyimages in Graphic Medicine

Panel at the Modern Language Association (MLA) Conference 2021

Saturday, January 9, 2021 | 10:15-11:30am

Medical Humanities and Health Studies Forum

I will be presiding over a session at the MLA conference in 2021 that will demonstrate graphic medicine in action using a keywords and keyimages framework. We will have six lightning presentations on examples of verbal and visual tropes illustrating the formal elements, theoretical concepts, practical and pedagogical tools, and health and illness politics of the field of graphic medicine. Please join us!

Tracing of mirror frame from Alison Bethel’s Are You My Mother?

Presentations:

‘And None of It Fits inside Panels’: Graphic Silence in Graphic Medicine

Briana Martino, Simmons University

The Therapeutic Performance in, and of, Ian Williams’s The Bad Doctor

Anna Mukamal, Stanford University

Dialogic Diagnostics

Elizabeth J. Donaldson, New York Institute. of Technology, Old Westbury

Sustainable Wellness in Seven Generations

Rosemary J. Jolly, Penn State University, University Park

Assembly: The Work of Grief

Tahneer Oksman, Marymount Manhattan College

‘Birthgiving’ Comics and Women’s Reproductive Rights in South Korea

Haejoo Kim, Syracuse University

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

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:

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? 

How to Have Pedagogy in a Pandemic Twitter Chat, 3-20-20, 7pm

Please join me for:

How to Have Pedagogy in a Pandemic: COVID19 Twitter chat

Friday, March 20, 2020

7 pm EST

BYOB!

Questions tweeted from my twitter account: @lldiedrich

We will use this hashtag to answer questions: #PedagogyInAPandemic

Other related hashtags:

#CovidCampus

#CoronavirusSyllabus

#FemPedSpring20 (hashtag for my WGSS teaching practicum graduate seminar)

Questions:

  1. Describe your position (e.g., faculty, grad student, adjunct) & the classes you are teaching this semester.
  2. What are some messages you have tried to convey to your students as concerns about COVID19 have intensified?
  3. What adjustments are you having to make as you transition to an online format?
  4. Please share some pedagogical strategies you are utilizing.
  5. Please share some materials or assignments that you think work well in an online format.
  6. What are some things you would like university leadership to know about how this new situation impacts you and your students?

 

Figuring out your own health care: Mom’s last trip

“I trust you to figure out your own health care.” Pete Buttigieg’s recent comment about personal responsibility and health care has generated outrage for its failure to grasp how patients and their families and loved ones struggle to navigate the time-consuming and often inadequate delivery of health care in the United States.

It has been two and a half years since what my sisters and I have come to call “Mom’s last trip.” This was the day my sister Andrea, who is a medical doctor, discovered our mother, Francyne Diedrich, on the floor of a small half bath in her home, wedged between the toilet and the wall. She was conscious but unable to move. Andrea could not move her so she called 911. The Charlotte Fire Department arrived first followed by an ambulance. Our mother was transported to the hospital and admitted as an in-patient.  Her lab results obtained from her bloodwork while she was at the emergency room indicated that she was in acute kidney failure.  After several days of treatment, doctors released her to a rehabilitation facility. Shortly after her arrival there, she collapsed and, no longer conscious, was taken back to the hospital. She passed away that evening, just eight days after leaving her home for the last time.

Long after her death, our mother continued to receive a bill for the ambulance. We disputed the bill for well over a year after her death. Our mother had been diagnosed with and treated for lung and breast cancer in 2004, and had long suffered from severe COPD. She had been ill in the week prior to her collapse and Andrea was visiting her daily to check on her. The culmination of her illness and her overall weakness due to her COPD resulted in her being too weak to get up when she fell.

My other sister Dawn, a lawyer and executor of the estate, spoke with the ambulance company that transported our mother. She explained our mother’s condition at the time of the fall and that she passed away shortly after the transport. The person she spoke to was sympathetic, but read the report prepared by the EMTs who transported her. Significantly, this report noted “patient denies any pain complaint” and that the patient’s daughter had requested transport for evaluation. Based on this information, Medicare denied payment because transport was deemed not medically necessary.

We three sisters laughed at this. There in the midst of the bureaucratic language of emergency medicine and insurance coverage was our mother, insisting she was fine and determined to remain at home. Our mother ALWAYS said she was fine when confronted with the prospect of going to the hospital. She was determined until the end to be at home and as independent as she possibly could be. “Patient denies any pain complaint” was our mom in a nutshell.

 When Dawn requested and received the report from the ambulance company and the results of the medical examination upon admission to the hospital, we discovered additional details. The report noted that our mother said “that she does not remember falling” or even more significantly, “why she was even in the bathroom.” This is an accurate account of the fact that our mother was confused and not fully comprehending what was happening to her. Yet, the report also stated, “Patient is CAOx4 and reports feeling lethargic over the past two days.” CAOx4 stands for conscious, alert, and oriented, and the x4 indicates she would have known who she was, where she was, the time of day and date, and that she would have understood her present situation. Andrea, the doctor who was there at the time, has no recollection of the EMTs asking our mother any orientation questions and is confident that, had she been asked these questions, she would not have been able to answer them.  Moreover these two statements are inherently inconsistent. The denial by Medicare focuses on two “facts” – CAOx4 and no pain, and ignores the confusion. And what is completely omitted from the report is the fact that our mother could not walk and it required two firemen and the two EMTs to get her upright and moved onto a gurney to be rolled into the ambulance.

We tell this story about our mother’s last trip not to elicit sympathy for the fact that we had to fight with the system about an ambulance bill while grieving. We are our mother’s daughters after all. We offer this story not as a complaint about our particular situation, but as just one example that we think reflects a broken system. We add this to the growing number of stories of people not calling ambulances, sometimes calling Uber instead, for fear of bills they cannot afford to pay. There are other horror stories of people being transported by ambulance and then receiving enormous bills for things completely outside their control, such as being transported by the ambulance to an out-of-network hospital. Finally, there are stories of insurance coverage being denied because it is decided after examination in the emergency room that the situation was not an emergency, even in cases like ours where the patient is admitted to the hospital.

In the end, we paid the ambulance bill out of pocket. Despite our conviction that the inaccurate documentation of our mother’s condition led to the denial of coverage, we sisters chose to make payment despite the estate having closed and, thus, there was no legal liability. We did this out of respect for our mom’s strong ethic about paying bills and managing money carefully. We had the financial resources to make the payment—many families do not.

We have resources that most people don’t have. With a doctor, lawyer, and professor who studies illness and disability in our family, we have far greater medical, legal, economic, and social capital than most Americans. And yet even our combined expertise and social capital was unable to correct what was clearly a flawed rationale for denying coverage. More than a flawed rationale, however, we believe this is flawed system of care. Everyone’s mother deserves better.