Reading notes: Bob and Ed’s Tomb

December 31, 2023 | ldiedrich

Robert Glück’s About Ed is a beautiful book—as an object as well as in terms of its hybrid form and content. Acknowledging the book’s objectness is important because it functions as a literary tomb that contains remnants of the relationship between Glück and his once lover and longtime friend Ed Aulerich-Sugai. The two met in San Francisco in 1970 and were lovers for eight years, during the time Glück was becoming a writer and Aulerich-Sugai an artist. After they split up, they remained friends until Aulerich-Sugai’s death of AIDS in February 1994. Glück wrote and assembled the many fragments that make up About Ed over the course of several decades, and he is explicit that the book is a kind of tomb: “I started this book two decades ago, so now it has turned into a ritual to prepare for death, and an obsession to put between death and myself. I want a tomb to keep up appearances in the face of death. Will I occupy the tomb I have been building for Ed?” (182)

The book as tomb is felt from the moment the reader lays eyes on its cover. The top half of the cover is an empty white space, except for the author’s name in black block letters in the top left corner and the book’s title in red block letters underneath the author’s name. Two names are thus linked and separated by the word “about,” a word that means many things, and suggests both spatial and temporal dimensions: reasonably close to, almost, on the verge of, on all sides of, around, here & there, near, concerning, and moving from place to place. Thus, one question Glück explores in About Ed is how to write aboutness—a quality that combines nearness with a certain imprecision. Glück gives us a hint of how he approaches this process in a chapter provocatively entitled “Ed and I Attend a Josef von Sternberg Retrospective in 1972 at a Theater on Eighteenth Street in the Castro That Disappeared Long Ago.” Describing the kinds of films that he and Ed enjoyed in the early seventies, Glück writes, “we looked for films that supported an overall sexuality and an aesthetic that suppressed the difference between figure and ground” (169). This is the aesthetic Glück crafts here too: a suppression of difference between figure and ground—Ed and about Ed, Ed and that which is reasonably close to and on all sides of him and which gives his short life shape and contour.

[Figure 1: Cover of Robert Glück’s *About Ed* (New York: New York Review Books, 2023). Cover image description: Bod and Ed in Palenque, 1974; courtesy of Robert Glück]

We see this aesthetic of suppression of difference between figure and ground operating in the cover image (Figure 1). On the bottom half of the cover is a photo of the author and Aulerich-Sugai at a waterfall in Palenque, Mexico in 1974. The two men, both shirtless, are sitting on the edge of a pool of greenish-brown water at the bottom of the falls. Ed’s hair is wet, and Bob’s head is covered in a red bandanna. Bob looks to his right at Ed and Ed squints in the sun looking directly at the camera, smiling. They are slightly out of focus, while the water and rocks in the background are in clearer focus, confusing figure and ground, Ed and about Ed. The two men hover, white and ghostly, in the foreground of the photo. Ed is framed by a thick stream of water and mist from the falls directly behind him, creating a punctum of whiteness that, in the cover layout, gives an impression of a whiteness leaking into the picture from beyond the frame. In the distance, not immediately apparent as our eyes are drawn to the pair in the foreground of the photo, another man can be discerned. He is nude and standing in shallow water with his hands over his head as he leans against a large rock under a second, less powerful waterfall cascading down the rock to the left of the larger one directly behind Ed. Although the background is in clearer focus, it is nonetheless difficult to tell what this other man in the background is doing—enjoying a shower under the falls, engaging in sexual activity? He is anonymous, despite the camera having captured him in the background of an image of two men fading into whiteness.

Framing the written text, on both the front and back inside covers, is a mixed media work on paper by Aulerich-Sugai titled Kohada Koheiji 3 from 1989. In the work, Aulerich-Sugai redraws the 19^th century Japanese artist Katsushika Hokusai’s painting of the same name from the series “One Hundred Ghost Tales (Hyaku monogatari),” which depicts a Kabuki actor who was killed by his wife’s lover and returns as a ghost to haunt the couple. In a chapter entitled “Ed’s Things,” about the work of archiving Ed’s documents, photography, and art as a way of preserving his work and memory, Glück explains that “Ed’s bequest to me was the hardest part. Two paintings from his ghost series have hung above my desk for twenty-nine years, the two ghosts my writing companions. I chose them because Ed and I watched horror films together. Skulls invite thoughts on the brevity of life. This skull ponders the delicate terror of its own naked bones: the loss of flesh is brutal sadness, the gesture of unfurling fingers” (175). As the writing contained in About Ed eventually moves from the privacy of Glück’s desk into the world, the two ghosts accompany the words, persistently contemplating the brevity of life, and now interred in this book as tomb.

Glück’s book as tomb also contains within it a chapter titled “Ed’s Tomb,” thus creating a tomb within the tomb of the book—tomb en abyme. In this chapter, Bob tells the reader about Ed’s decision, as he was dying of AIDS, to purchase a niche at the San Francisco Columbarium and construct his own tomb to house his ashes. Glück writes, “The tomb is a diorama, a ground of polished viridian marble and a robin’s egg sky, across which drift solid white puffs with lavender-gray shadows” (79). In the diorama is a ceramic vase for ashes. In an earlier version of the chapter, published in the San Francisco Museum of Modern Art’s Open Space “hybrid publishing platform” in October 2013, Glück provides a genealogical method-image of his process of making his tomb in writing: “I mean tomb in the sense of tombeau, a musical form in the sixteenth century, a poetic form in the nineteenth and twentieth, ‘Le Tombeau de Charles Baudelaire.’ So Ed’s tomb is to be a public monument.” The 2013 Open Space piece includes a photo of Ed’s tomb at the San Francisco Columbarium (Figure 2), which also includes a photo of Ed within it. As Glück explains in the chapter “Open in All Dimensions,” Ed’s partner Daniel “put a photo of Ed in the niche, adding a human scale that Ed had ruled out. Ed hadn’t planned to face outward, but to display his isolation” (149).

[Figure 2: Photo of Ed Aulerich-Sugai’s niche at the San Francisco Columbarium. Photo: Richard Barnes/OTTO. Available at https://openspace.sfmoma.org/2013/10/seca-2012-robert-gluck/.]

“Open in All Dimensions” is also the chapter in which Glück mentions reading W.G. Sebald’s The Emigrants and “trying to decide if [he] liked Sebald’s repellant nostalgia” (150). Glück writes of Sebald: “His strange rhetoric supports complexity, his antique prose is a time machine (as a library is a time machine). It marks a change in Holocaust fiction, because the shock of mass death does not overwhelm the complexity of his characters.” Then, Glück shifts from Sebald and the Holocaust to the trauma of AIDS, wondering, “Was Ed’s death a trauma that replaced his life? Was he thrown into the mass grave of HIV? In mass death, recovery occurs in the collective mind over time. It may take a generation to reacquaint ourselves with the dead, for their rich complexity to be apparent once more” (150). Thus, even in his uncertainty as to whether he “liked Sebald’s repellant nostalgia,” he connects his project with Sebald’s in its timing in relation to the AIDS crisis—it takes Glück more than a generation after AIDS arrived and Ed’s death to assemble his own time machine. Glück’s version of Ed’s tomb reacquaints the reader with the dead, both the “mass grave of HIV” and the singularity of Ed Aulerich-Sugai. I have written elsewhere about “Sebald’s quincunx,” which I argue is a “compelling structure through which to read Sebald because it provides an organization for inquiry that suggests all history is fundamentally a burial.” Glück offers a similar method-image here. About Ed refers to the AIDS generation that surrounded Bob and Ed, and Glück’s book as tomb creates a formal structure that suppresses the difference between figure and ground—the “mass grave of HIV” and the many individual lives lost, so that we might reacquaint ourselves with their rich complexity.

illness politics and hashtag activism

November 20, 2023December 7, 2023 | ldiedrich

My new book, Illness Politics and Hashtag Activism, is coming out in the spring from University of Minnesota Press. You can preorder it here and get 40% off the print edition using the code MN90850. It’s part of the Forerunners: Ideas First series, which publishes “short books of thought-in-process scholarship, where intense analysis, questioning, and speculation take the lead.”

Illness Politics and Hashtag Activism explores illness and disability in action on social media, analyzing several popular hashtags as examples of how illness figures in recent U.S. politics. Lisa Diedrich shows how illness- and disability-oriented hashtags serve as portals into how and why illness and disability are sites of political struggle and how illness politics is informed by, intersects with, and sometimes stands in for sexual, racial, and class politics. She argues that illness politics is central—and profoundly important—to both mainstream and radical politics, and she investigates the dynamic intersection of media and health and health-activist practices to show how their confluence affects our perception and understanding of illness.

Women’s football always on the verge

August 28, 2023 | ldiedrich

Women’s football has been around a long time, and it’s been very popular. The English Football Association (FA), for example, did not ban women’s football in 1921 because people weren’t watching; they banned it because people were watching and because more and more women wanted to play. I begin with this simple fact because, repeatedly, there are some who express surprise at the popularity, quality, and success of women’s football. Some of those unable to grasp this popularity are the men in charge of football at both the international and national level. Unable to ignore it or claim the growth and scale of the women’s game as their achievement, the men in charge can only patronize players and fans alike and try to contain it.

Women’s football has been central to my life since I first kicked a ball on a playground in Atlanta in the 1970s. When I joined a pick-up game at recess in elementary school, I immediately fell in love with the sport. I eagerly joined a team coached by two teenage girls. In high school, I was one of two girls who played on the boys’ B-team before a girls’ team was created. I was recruited by Anson Dorrance to play at UNC but decided to go to UVA instead. My playing career ended in 2001 when I had to have surgery on a cervical disk in my neck that was compressing my spinal cord.

I am also a longtime fan and armchair analyst of the women’s game. I attended the first-ever and sold-out women’s soccer gold-medal game at the 1996 Atlanta Olympics, witnessing the U.S. beat China 2-1 in a scintillating and evenly matched game. I was aghast to learn the next day that, rather than show the dramatic final live on television, NBC covered a practice session of the U.S. men’s basketball “dream” team. I watched the final of the 1999 Women’s World Cup, which was a rematch of the Olympics final, in a packed and rowdy bar in Atlanta. I attended the first-ever home game of the Atlanta Beat, one of the teams in the Women’s United Soccer Association that began in 2001. Two of the international players on the Beat roster were the great Chinese striker Sun Wen, who had scored in the Olympics final in 1996, and the soon-to-be legendary Japanese midfielder Homare Sawa. Japan became my favorite women’s team and, in 2011, I cheered on as Sawa led Japan over the U.S. to win the World Cup in Germany in what was, in my opinion, the greatest match in Women’s World Cup history. Sawa would score from a corner kick with a flick from an improbable angle in the 117 minute to tie the game and send it to penalty kicks. As a sign of the continued lack of investment in covering women’s football, there were limited replays of the goal in the U.S. coverage and commentators and viewers were unsure whether Sawa had used her head or foot to score.

Fast forward to 2023. By all accounts, the Women’s World Cup in Australia and New Zealand was a roaring success. Almost two million fans attended the tournament, smashing the previous record by 600,000. Australia’s semi-final loss to England was the most-watched TV event in Australian history. Fears that by expanding the tournament to 32 teams, the quality of the football, at least in the group stage, would be diluted, did not pan out. Many of the supposedly “lesser” teams played well against the perennial powers in women’s football and shock early exits by the US, Germany, and Norway meant that at the quarterfinal stage only one previous winner of the tournament (Japan) was still in the running.

In the end, a final between England and Spain was not a surprise to folks like me who follow the women’s game closely. Spain was the better team on the day and their 1-0 victory was a glorious achievement for a talented team that has historically underperformed in senior tournaments, in no small part thanks to a structural lack of support for the women’s team from the Spanish Federation (RFEF) and a long and sordid history of domineering, patronizing, and ineffective coaching. The immediate and ongoing (as I write) aftermath of Spain’s historic win has shocked the world, but for many of us who have followed the Spanish women’s team’s travails over the years, though shocking, it has hardly been surprising.

To try to recap in a short blog piece all the twists and turns of this story is an impossible task. Suffice it to say, the Spanish Federation’s (RFEF) has showed the world the sexism and gaslighting the Spanish women players have been dealing with, and trying to change, for decades. After the final whistle blew, the RFEF president Luis Rubiales was filmed grabbing his crotch in a crude celebration, as the Spanish queen and her 16-year-old daughter stood nearby. In a filmed “apology,” Rubiales seems to me to be pleased with himself in a boys-will-be-boys way as he describes the gesture as “unfortunate” and “unedifying” and says, “I have to apologize to the royal family.” And, revealingly, he admits the gesture was a tribute to the Spanish team’s controversial manager Jorge Vilda. For me, this is a classic example of what Eve Kosofsky Sedgwick identified as “male homosocial desire.” As I tweeted at the time, “Rubiales’s crotch grab to Vilda shows how women (footballers) exist simply as a conduit between men and for a performance of hegemonic masculinity.”

Screen grab from film footage of RFEF President Luis Rubiales grabbing his crotch in a crude celebration and as tribute to coach Jorge Vilda after Spain beat England to win the Women’s World Cup.

On the podium for the medal ceremony, Rubiales grasped Jenni Hermoso’s head in both his hands and kissed her on the lips. Millions watched this incident live, and clips of the kiss then circulated widely on social media. Hermoso said not long after on Instagram Live that she “didn’t like it.” Later, the RFEF released a statement supposedly from Hermoso indicating she consented to the kiss, a statement she would later categorically deny having made. The RFEF held an emergency meeting where Rubiales gave a rambling speech in which he insisted he was the victim of “false feminism” and intoned three times: “I will not resign.” This was applauded by the men in attendance, including Vilda. The entire World Cup-winning team (and other Spanish women players) signed a letter in support of Hermoso, condemning “behaviors that have violated the dignity of women” and asserting they would not play another game until Rubiales resigned. On social media, the hashtag #SeAcabó (which translates as “it’s over” or “time’s up” and “enough is enough”) appeared. FIFA (another bastion of male homosocial desire) suspended Rubiales for 90 days and told him not to contact Hermoso or anyone connected to her. As I write, the latest developments sound like the plot of a bad soap opera: Rubiales’s mother is apparently hunger striking in a church and his brother and cousin have appeared live on Spanish TV to accuse Hermoso of lying.

I had initially planned to write a piece about how women’s football is always on the verge, not because it isn’t popular, but because retrograde institutions (FIFA, the RFEF, media corporations) undermine and contain its potentiality. I was going to talk about how irritating it is, that every four years many male journalists and commentators treat women’s football as if it’s only just been discovered, despite the long history of its popularity and slowly increasing structural support. One particularly egregious example came after the U.S. was eliminated by Sweden in the round of 16. The Swedish goalkeeper Zećira Mušović was instrumental in her team’s win and chosen as player of the match. In an interview after, a reporter asked her if she knows Zlatan Ibrahimović and mentioned that Mušović and Ibrahimović are both of Bosnian heritage. Mušović and others were irritated by the question, which of course had nothing to do with her outstanding performance, but also revealed how patronizing some coverage of the women’s game still is. I also noticed how the groundswell of support for the tournament in Australia, especially as the Matildas made it to the semifinals, was compared by U.S. announcers to what happened in the U.S. in 1999. You could only make a statement like this if you were not paying attention to the growth of the women’s game elsewhere. Indeed, the U.S. is now falling behind, in terms of both talent and tactics, to other nations. Yet all of this is now overshadowed by the spectacle of the Spanish Federation forced through its own hubris and arrogance to display to the world its crass, abusive, and endemic misogyny. Led by the Spanish women’s team—the 2023 World Cup champions, perhaps we are ready to say in a unified voice: #SeAcabó.

“Probably filmic”: Reading notes on Ali Smith’s There but for the

July 7, 2023 | ldiedrich

Posting more “reading notes” on here, as I search for a more hospitable social media space than twitter is now. As folks who follow me on twitter will know, I’m a big fan of Scottish queer writer Ali Smith. Last year, I re-read her seasonal quartet, and now I’m going back to re-read her earlier work. Here are a few re-reading notes (not comprehensive!) on Smith’s 2011 novel There but for the.

[Photo of the cover of Ali Smith’s novel *There but for the*. The cover is an abstracted image of a door with a yellow door handle. Light comes from the right side of the door, as if it is opening.]

In an interview in The Paris Review in 2017, Adam Begley asks Ali Smith about how a number of her novels “seem to germinate from a shocking or troubling incident,” which operates as a kind of catalyst for the story. Smith responds with this somewhat impressionistic comment on form: “Probably filmic—a visual device which allows you to build a spatial happening around it, which becomes the novel.” I’m struck by Smith’s use of the phrase “probably filmic”—that is, not definitively but most likely filmic, as if the word filmic can only imprecisely capture what this device is doing in Smith’s work. Smith leaves open the terminology for the device but acknowledges its visual and spatial qualities. Begley responds, “And is that how composition works? You imagine consequences?” Smith then uses the example of the dumbwaiter incident from her novel Hotel World (2001), and says she was “immensely grateful that the incident just appeared.” What this exchange captures, for me, is that Smith’s formal play operates both verbally and visually across her oeuvre. We can see this both/and verbal/visual formal play at work in There but for the, beginning with the title whose four words are used as a 4-part syntactical structure for the book—each word is the title of a section of the book, but the words (separately and together) also create an opening for imagining ourselves in other circumstances—as is suggested by the saying that the title directs us towards but doesn’t finish—“there but for the…grace of god, go I.” Our capacity (or not) for empathy is central to all of Smith’s work.

In There but for the, the ”shocking or troubling incident” that Smith builds a spatial happening around is the story of a man, Miles Garth, who goes to a dinner party with another man he barely knows and ends up quietly locking himself in the hosts’ spare bedroom, where he will stay for several months, attracting attention from the media and a growing group of followers who camp outside the house hoping for a glimpse of Milo, as they insist on calling him. Miles’s followers ascribe spiritual meaning to his actions, even as he is hidden from view and his reasons for shutting himself in a stranger’s home remain opaque and are never fully explained. The stranger/house guest makes frequent appearances in Smith’s novels, but until I read the interview with Smith, I hadn’t thought of the visual and spatial effects that such encounters and intrusions produce. The filmic element is that we get to see domestic scenes—and the idea of home itself—through the eyes of a stranger. In this case, however, the visitor becomes the absent presence behind a closed door for other encounters in and beyond the house. We might say, with reference to the first two words in the title, his thereness in the guest room takes the story and the reader off to the side (as Miles says the word “but” does, grammatically-speaking), forcing us to wonder how things are connected. Our capacity (or not) to see and feel connection is another way of describing empathy.

Smith’s novels also almost always include a precocious young person—in this case, 9 (soon to be 10)-year-old Brooke, who is the clever and sensitive child of two professors. Brooke loves wordplay—knock knock jokes feature prominently, and of course knock knock jokes are verbal and visual devices made possible by an imagined or actual closed door. As Smith professes and performs in her novels, “Language is endless currency.” We learn Brooke is Black by the not-at-all-subtle racism and microaggressions that her parents endure at the excruciating dinner party scene at the center of the book that Miles disengages himself from by, paradoxically, refusing to leave the house. Smith is especially good at creating intergenerational encounters and friendships, and it is Brooke who will form a connection with Miles by slipping notes under the door of his room. The notes begin with the phrase “The fact is” and the repetition of the phrase in the last section of the book suggests the ongoingness of gathering “the stories and histories of things, even if all we know is that we don’t know.” It is Brooke who eventually knocks on the closed, but, as it turns out, not locked, door and Miles invites her in. The book ends with a door opening and Miles and Brooke exchanging with each other the first line of a story that the other will then write to “see what happens in the process.” Words as opening to a story still to be written. Probably filmic. A spatial happening. Knock knock. Who’s there?

[Photo of a page from my notebook with a drawing of Ali Smith and some notes on *There but for the*, including “thereness: the condition of being there in position: presence in a place distinguishably there not here” and “Brooke 9 years old” “Obviously not ours.” (13)]

Alison Bechdel’s Queer ARchives: Graphic Medicine 2023

June 26, 2023June 27, 2023 | ldiedrich

I’m looking forward to presenting my paper “‘Let’s try and retrace our steps, shall we?’ Invitations and Encounters in Alison Bechdel’s Queer Archives” at the Graphic Medicine Conference in Toronto in July. Can’t wait to see old and new Graphic Medicine friends! Here’s the abstract for my presentation, which is on Friday, July 14 at 10:30. The full conference program is available here.

Alison Bechdel’s “Cartoonist’s Introduction” to The Essential Dykes to Watch Out For opens with a self-portrait of the cartoonist at her desk drawing. Bechdel looks up and says, “Good God,” perhaps to the cat who is lounging in a box on the drafting table. In the next tier, Bechdel “flitflitflits” through her weekly planner, searching for something, and then she clutches her horrified face, exclaiming in disbelief to her readers, “I FORGOT TO GET A JOB.” In the bottom tier, Bechdel anxiously admits, “I’ve been drawing this comic strip for my entire adult life!” and wonders, “How did that happen?” In the last panel on the page, Bechdel taps a security code as she opens a door labeled “Archives” and says, “Let’s try and retrace our steps, shall we?” (Fig. 1) We are then given a tour of Bechdel’s archives (Fig. 2) as she tries to understand how it happened that she became a cartoonist who sought to capture queer life in all its complexities.

Fig. 1: Detail from Alison Bechdel’s *The Essential Dykes to Watch Out For* (New York: Houghton Mifflin, 2008), vii.

I am fascinated by this image of Bechdel’s archives as well as by the invitation to enter the archives—that is, both her comics as an archive of queer life and her comics in the archives (through archival research on her papers at Smith College). What does this invitation and encounter have to do with graphic medicine, you ask? For one, the content of Bechdel’s work covers many topics for graphic medicine: OCD, AIDS, breast cancer, disability, and fitness cultures—all are taken up and archived in Bechdel’s work. Even more so, Bechdel demonstrates both drawing and archiving as forms of care and, together, as a kind of graphic medicine. Thus, my presentation is also an invitation to the Graphic Medicine community to consider its own practices of documenting through drawing, archiving, and drawing archiving.

Fig. 2: Detail from Alison Bechdel’s *The Essential Dykes to Watch Out For* (New York: Houghton Mifflin, 2008), viii.

remembering cyril

June 10, 2023July 2, 2023 | ldiedrich

On Friday, May 26, Victoria Hesford and I said goodbye to our beloved pup Cyril. We had been co-dependent companion species for over 13 years and the feeling of loss has been profound, demonstrating for me the psychosomatic qualities of grief. People who follow me on social media know that I frequently posted pictures of Cyril because he was a truly beautiful, soulful pup with a quirky spirit who liked to jump on things and pose for pictures (he was very treat motivated, as they say). He loved going for long walks in Avalon in Stony Brook and Fort Greene Park and Prospect Park in Brooklyn. After Hurricane Sandy downed countless trees, he began jumping on anything and everything and posing for pics (for a treat, of course). Shortly after his death, we created a rock cairn on a tree stump at Avalon to remember him and as homage to his talent for striking elegant poses.

[On the left: Cyril at Avalon sitting on a tree stump high off the ground with bright sun shining through the trees behind him. On the right, a rock cairn sits on a tree stump at Avalon, echoing Cyril’s pose, and placed as a memorial to him.]

We are forever grateful to North Shore Animal League, which is the largest no-kill shelter in North America and the place from which we adopted Cyril. A month after we adopted him, he was diagnosed with Addison’s disease, which is a chronic but treatable condition in which the adrenal glands don’t produce enough cortisol and aldosterone. When we spotted him at North Shore, he had just come from being treated in the health center for what they thought was a gastrointestinal problem. He was placed in the part for older dogs, and we were immediately drawn to this sickly 5-month-old runt with beautiful light-brown eyes. As we would soon learn, Addison’s masks as other conditions, especially gastrointestinal ailments, and this is why it can be deadly, especially in dogs. After his Addison’s diagnosis, North Shore subsidized his Addison’s care. One of the many amazing vets at North Shore who treated him over the years taught me how to give him his monthly injections of corticosteroids. North Shore would send us home with several months’ worth of meds, which lessened the number of stressful vet visits we had to make. As all the guidance about Addison’s says, it is crucial to get the right balance of replacement steroids, through daily oral steroids, monthly injections, and regular bloodwork to measure levels of sodium and potassium. Even at the very end of his life, Cyril’s Addison’s was under control.

Cyril passed away just as I was finishing my book Illness Politics on Social Media soon to be published as part of the Forerunners Series at University of Minnesota Press. I mention Cyril in my acknowledgements not just because he had been an important part of my life as I thought and wrote about illness politics, but also because his own illness influenced the project, at least indirectly. The vet who diagnosed Cyril had told us, “Addison’s is what JFK had.” Not missing a beat, Vicky replied, “Well, at least Cyril can still be president.” After his diagnosis, I began reading about Addison’s, and learned that Kennedy had kept his diagnosis of Addison’s secret in the 1960 presidential election, fearing that it would have been viewed by many as disqualifying. Thus, in many ways, our experience with Cyril’s Addison’s was the beginning of my book on illness politics.

[On the left: Cyril at Avalon in 2012 after Hurricane Sandy had downed numerous trees. Cyril is lying on the end of a large uprooted tree that had fallen across the trail and been cut and cleared off the trail. The base of the tree remained in the ground and created a kind of runway up into the air that Cyril would jump on and climb up. He would then pose at the end, sometimes with his paws hanging over the edge, as he does here. He looks pensively to one side. On the right: the same spot 11 years later. The tree was cut again, making it more stumpy. The tree is disappearing back into the ground as it decomposes. Moss is growing on the uprooted soil behind the stump.]

health, medicine, and literature in the american context

May 30, 2023 | ldiedrich

My article on “Health, Medicine, and Literature in the American Context” has posted on the online Oxford Research Encyclopedia of Literature. Check it out here: https://doi.org/10.1093/acrefore/9780190201098.013.1358

Summary

Writers have long explored illness and care as key themes in a wide range of work across a variety of literary genres. In the second half of the 20th century, literature and medicine emerged as a subfield of literary study as well as a component of medical education. In the American context, since the 1970s, research and teaching methods associated with the subfield of literature and medicine have become increasingly institutionalized in universities and medical schools. As with many emergent fields, there has been much debate around the name of the field and its primary objects of study and methods of analysis. Interdisciplinary scholars have expanded the field from a narrow focus on literature to a broader interest in the multiplicity of discourses, texts, genres, and forms—including verbal, visual, digital, and multimodal forms of creative expression and pedagogy. As a response to this expansion beyond literature, several alternatives to “literature and medicine” have been proposed and institutionalized as part of the process of field formation. Around 2000, “narrative medicine” emerged as a clinical practice that emphasizes the role of stories in medical encounters and seeks to teach health practitioners narrative competence as a form of care. Other scholars have debated whether “medical humanities” or “health humanities” best captures the parameters and investments of the field, with health humanities offered as a more inclusive name indicating the importance of spaces, practices, and practitioners beyond the institution of medicine. Some scholars have proposed “health studies” or “critical health studies” as encouraging the cross-fertilization of theories and methods from the humanities and social sciences (including medical sociology, history of medicine, philosophy, and literary studies), as well as from the interdisciplinary fields of women’s, gender, and sexuality studies, science studies, critical race studies, and disability studies, into medical and health thought and practice. Scholars calling for a more critical medical humanities or health studies argue for the importance of structural analysis and an examination of how power operates in medicine and health care. Many notable developments—including the turns to narrative, to comics, and to structural analysis—have had global impacts, especially in light of the ongoing Covid-19 pandemic. The experience of illness and its diagnosis and treatment connects the local and phenomenological—the embodied individual in the world and in relation to others (loved ones, caretakers, health practitioners, health advocates, and activists)—with national and transnational systems and structures, including health care policies and delivery services, basic and applied medical research and development, and poverty, racism, war, climate change, and other environmental factors contributing to the increasing precarity of vulnerable people and health disparities between populations.