Abstracts
Abstracts by Conference Organizers
TITLE: I was diagnosed with. . .
SPEAKERS: Eftihia Mihelakis and Lucille Toth
Abstract Forthcoming
TITLE: Acting Out or Working Through: Trauma, Pedagogy, and ‘Feminist’ Crime Fiction
SPEAKER: Melissa Jacques
In Talking about Detective Fiction (Knopf, 2009), PD James constructs a thoughtful defense of the genre, arguing that “it is possible to deal with the intellectual side of the detection while portraying with compassion and realism the emotional trauma of all the characters touched by this ultimate crime [murder], whether as a suspect, innocent bystander or indeed the perpetrator” (50). One of the most striking things about this statement is the explicit intersection of compassion, realism, and trauma. And in James’ reference to victims, bystanders, and perpetrators, we see a constellation of actors familiar to scholars of the Holocaust, the cornerstone event for early texts in the field of trauma theory. In “Acting Out or Working Through: Trauma, Pedagogy, and ‘Feminist’ Crime Fiction,” I want to explore both the potential and the limits of genre fiction that aims, explicitly, to address the trauma of murder, an event James describes as “a contaminating crime” (50). Bringing the work of trauma theorists like Dominick LaCapra and Cathy Caruth into conversation with a range of texts, from Steig Larsson’s The Girl with the Dragon Tattoo, through to Denise Mina’s Garnethill Trilogy and the Australian television drama, Janet King, I ask whether crime fiction might not be an ideal genre within which to represent the complexity of traumatic experience while at the same time reaching/teaching a mass audience. I will complicate my answers to this question with an account of the challenges I’d faced while teaching a course on feminist crime fiction. Many of my students surprised me by their greater appreciation for texts that were less informed by compassion and realism. They resisted nuance and complexity, opting, instead, for the pleasures of acting out rather than the labour of working through. While I was frustrated by this reaction at the time, I’m curious, now, about what that resistance might teach us about the transmission of affect in our encounters with the traumatic experience of others.
Abstracts by Keynote Speakers
TITLE: Health, Illness, and Representations or Does Studying ‘Medical Humanities’ Make You a Better Health are Professional?
SPEAKER: Sander Gilman
Abstract Forthcoming
TITLE: Anticolonial Feminist Poetics and Social Determinants of Health: A Critical Conversation with Health and Medical Humanities
SPEAKER: Sarah de Leeuw
Abstract Forthcoming
Abstracts by Participants
TITLE: African Comics and Medical Discourse: A Study of Benjamin Kouadio’s Le sida tue et alors as a Narrative Pathography
SPEAKER: Richard Oko Ajah
The study on comics (BD) and its interdisciplinary relationship with medicine has become increasingly recognized around the world due to the emergence of the new field of medical humanities. Although Africa produces its graphic writings (graphic novels, comics or BDs), studies on African comics are minimal and its contribution to medical discourse has not been fully brought to light in African literature. In this study, I intend to examine how African comics engage in medical discourse and how Benjamin Kouadio’s Le sida tue et alors mirrors the city of Abidjan with its HIV/AIDS epidemic. Based on visual discourse and conceptual metaphor theory, I intend to closely examine the visual metaphors and metonymies that the author uses to convey feelings and empathy in the attempt to promote his therapeutic education, to deconstruct stereotypes against the sufferers and to raise the awareness of the Ivorian public towards the ravage of HIV/AIDS. The cognitive architecture and the organization of the graphic modality of Le sida tue et alors depend on the author’s artistic ideology which constructs the graphic characterization, the verbal expressivity of the characters and the spatio-temporal elements which are evoked in the topographies, visually scenic of Kouadio’s "pathography". It behooves on me then to interrogate pictorial runes or visual narrative figures that the illustrator evokes to demonstrate the psychological state of the characters for educational purposes. Bubbles, flying cap, falling hat, question mark, icons, etc. are metaphorical signifiers that are infused with cultural meanings, denoting surprise, fear, joy and all the negative emotions that should censure the sexual vagabondage of the Ivorian public. In its medical discourse, Kouadio's narrative pathography points us to the danger of HIV/AIDS and how to stop its spread in African cities.
TITLE: “Non-compliance” as a legitimate way of living one’s illness
SPEAKER: Aude Bandini
As Havi Carel’s work Phenomenology of illness (2017) emphasized, patients are more often than not threatened by epistemic injustices. Evidence from both social psychology and social epistemology shows that patients’ reports are indeed significantly more likely to be misunderstood, ignored, or dismissed than reports from healthy people. Healthcare providers are particularly at risk of misjudging ill people in that way, which can only lead to mutual distrust, conflicts, and poor healthcare.
In this presentation, I wish to extend Carel’s analysis and try to demonstrate how philosophy of health can actually help both healthcare providers and patients alike to get a better understanding of a long-standing problem occurring in the management of chronic illnesses: “non-compliance.”
I argue that patients categorized as “non-compliant” are particularly at risk of being victims of epistemic injustices, because while most healthcare providers now agree that most of their patients achieve to draw some valid and useful knowledge from their daily life with the condition (their so-called “experiential knowledge” or “lay expertise”), they would certainly deny the same epistemic abilities to a non-compliant patient, as if the latter’s experience, as long and varied it may have been, was necessarily epistemically sterile or worthless. As a consequence, her voice remains generally unheard, if not utterly silenced.
To restore the possibility of a fruitful therapeutic alliance between physicians and patients labelled “non-compliant,” we need to understand exactly what type of epistemic prejudices are at stake. Usually, those patients’ refusal or inability to behave is explained as the outcome of various possible flaws, e.g. ignorance, short-sightedness, laziness, or weakness of the will, etc. In order to correct such gross oversimplifications, I wish to investigate the legitimate reasons a patient may well have to deliberately resist medical prescription for her own sake, and even for the sake of her well-being as an individual living with a chronic condition.
TITLE: Nelly Arcan: Prostitution, Psychoanalysis, Projection, Transfer
SPEAKER: Léonore Brassard
In the last page and the very first sentence of her second book (Folle, 2004), Arcan insists on a leitmotiv in her work: the disaster of (not) meeting with the Other — be it through sex work, psychoanalysis, or other relationships (contaminated by the two former): “À Nova, rue saint-Dominique où on s’est vus pour la première fois, on ne pouvait rien au désastre de notre rencontre” (Folle, p. 7); “il me semble que les hommes sont ainsi, qu’ils meurent au bout de leurs ressources, qu’ils crèvent tous d’avoir voulu rencontrer leurs semblables et de n’avoir, pour finir, connu que la catastrophe” (p. 205). However, in Putain (2001), the narrator Cynthia also states that her writing, wired in the psychoanalytic discourse, is constructed in order to evacuate any possibility of others entering her discourse: “il n’y a pas de trous entre les mots […] pour ne laisser aucune place à ce qui ne viendrait pas de moi” (Putain, p. 65), “je n’ai pas l’habitude de m’adresser aux autres lorsque je parle” (p. 7, incipit). The contradictory sentiment towards the Other, which is both desired and refused, is central in Arcan’s writing.
Could prostitution and psychoanalysis, two different and singular spaces pointing towards “therapeutic” relationships of projection and transfer, lead to a similar « disaster » of (not) meeting with the Other, especially as they are tightly linked together in Cynthia’s stream of consciousness? By intertwining prostitution and psychoanalysis through literary interdiscursivity, and by insisting on the compulsory coherence of her own discourse and identity (with the conjunction “et” starting nearly every paragraph), it seems that Arcan is forcing the reader to think both the lack and the excess of a potential viable “link” in the “therapeutic space”, be it towards the Other or the Self.
TITLE: The “villainous obstinacy and ugliness” of Dr. William Beaumont’s “special pet”: Representations of Alexis Saint-Martin in A. Myer's The Golden Page (1977) and J. Karlawish's Open Wound (2011), Novels on the “Father of Gastric Physiology”
SPEAKER: Maxime Raymond Bock
Born in Berthier, in Lower Canada, Alexis St. Martin (1794-1880), a voyageur (fur trader) employed by the American Fur Company, rose to fame after he became a guinea pig to American military surgeon, William Beaumont (Lebanon, CT, 1785-1853). Injured by a gun shot in 1822 at the fort of the military garrison on Mackinac island in Lake Huron, St. Martin survived thanks to Beaumont’s care, but the incomplete healing of his wound formed a fistula giving access to his stomach. After contracting St. Martin as an indentured servant, Beaumont began a series of experiments that allowed him to discover the chemical process of digestion by gastric acids. His memoir, Experiments and Observations on the Gastric Juice and the Physiology of Digestion (1833), made medical history and earned him recognition as the “Father of Gastric Physiology.” The two existing novels about Beaumont were written by American authors, The Golden Page. A Biographical Novel (Alma Myer 1977) and Open Wound. The Tragic Obsession of Dr. William Beaumont (Jason Karlawish 2011), and feature a dumb, alcoholic, racialized St. Martin, sometimes rendered animal-like or infantilized, deprived of subjectivity and reduced to an object of experimentation that Beaumont uses at will. The Beaumont-St.-Martin case is multifaceted. Beaumont’s experiments, made possible by a classism that ranks national, religious, and linguistic differences, were carried out thanks to a consent bribed by money and the ambiguity of a moral debt, and produced an imaginary body both wonderful, because it gave access to natural phenomena still unknown at the time, and abject, ugly, and repugnant, because it was distorted, foreign, stigmatized. Following Grégoire Chamayou in his book Les corps vils. Expérimenter sur les êtres humains aux XVIIIe et XIXe siècles, the question to ask is not “can we experiment on people?”, but rather, “on which people can we experiment?” (2008) In this paper, I will examine the power relationship between Beaumont and Saint-Martin in a context of racialization of the experimental subjects (doctor/patient, researcher/guinea pig, master/servant, American/French Canadian) with an approach in medical humanities focusing on body representation, and the ethics of biomedical experimentation (Howard-Jones 1982; McCullough 1983; Danou 1994, 1998; Helms 2005; Laforest, Clermont and Rouby 2016). This study of St. Martin in the novels of Myer and Karlawish will also provide an opportunity to reflect on the representation of Québécois and French Canadian characters in American literature, an field of research that has yet to be developed.
TITLE: Transmitting It
SPEAKER: David Caron
Cultures forget. In particular, they tend to forget—that is to say, deny—the collective violence they have unleashed in the past, especially on their own. At stake is the sense of perfectibility on which their futurity as a culture depends. Yet, personal testimonies of historical acts of violence may offer stubborn resistance to oblivion and denial. Whether witnesses succeed in offering counter-narratives to dominant cultural forces, however, depends on how their accounts are received and what those who receive them do with these testimonies. With that in mind, Dr. Caron will ask: What, in the era of successful treatments and effective prophylaxis, is the point of testifying to one’s own experience of living with HIV? Is anyone interested? And if so, in what exactly? And for what purpose? Does HIV/AIDS still offer us anything to theorize about—or perhaps to theorize with?
TITLE: Hervé Guibert: The Serial Embodied Experiences of Failure
SPEAKER: Benjamin Gagnon Chainey
In 1977, fourteen years before his death following a suicide attempt, Hervé Guibert wrote in his first published text, La mort propagande: “My body is a laboratory that I exhibit, the only actor, the only instrument of my organic delirium. Partitions on a fabric of flesh, of insanity, of pain. Observe how it works, collect its performances.” The incipit of Guibert’s work inscribes itself, from its origin, under the aegis of a “state of theatricality, of paroxysm” (La mort, p. 8), blurring the boundaries between body and language, which Guibert offers for all to see and to read, but also, in his fight against AIDS, to feel on the “luminous plate of [our] sensitivity.” (Le protocole, p. 70). This embodied and shared experience of the suffering body and language, HIV+ Guibert performs it alongside numerous physicians whom he serially consults, as symptoms present themselves and as care relationships successively fail to name, evaluate and treat them. With Guibert, this seriality of failures is propelled not only by the impotency of the medico-scientific discourse, but also – in counterpoint to contemporary critics of the medical practice’s lack of empathy – by the “human sluggishness” of the care relationships, which impede hopes of healing. Referring to the care relationship with Dr. Chandi, which became friendship, Guibert writes:
There’s some sluggishness and slack in the power relationship between the doctor and the sick person, and it’s in the looseness of power of one over the other, and of efficiency, that the more humanity insinuates itself. At the same time, we’re at a point where he’s almost unable to continue being my physician, and me his patient, where we’ve gone beyond our ability, and without betraying him, I would need other physicians, and to make this relation more brutal and depersonalized.
By drawing on Judith Halberstam’s (2013) The Queer Art of Failure, and on Matthew Ratcliffe’s (2013) theories of embodied subjectivity, the presentation will introduce elements of answer to the following question: how may Guibert’s embodied and interdiscursive experience of suffering – at once pain and sensory/semantic deprivation – hint towards an epistemology of failure, at once medico-scientific and relational? This epistemology, I will suggest, is fundamental to Guibert’s conception of literature: “One of roles of literature is to teach death.”
TITLE: The Cold War Biopolitics of Disability in John Okada’s No-No Boy: Racialized and Gendered Ableism of American Society in the 1950s
SPEAKER: Kim Chang-Hee
John Okada’s No-No Boy deals with the despair, frustration, rebellion, and misery of the second-generation Japanese Americans called the “Nisei,” who had been imprisoned after the Japanese invasion of Pearl Harbor and refused to declare his loyalty to their mother country, the United States. It has since its reprint in the 1970s, become a canonical work for Asian American literary studies with regard to anti-Asian American history and the United States’ postwar Cold War politics concerned. Existing research on this novel, as a result, presents various hermeneutical perspectives, particularly focusing on the psychoanalytic methodologies of affects, trauma, and racial melancholia. Critics, such as Viet Nguyen and Daniel Kim, argue that the disability of the body and mind as inscribed by the Nisei’s traumatic experience of internment is invoked in No-No Boy with a variety of pathological symptoms such an institutional violence gave rise to. However, previous literary studies of the work are problematic in that the psychological and physical wounds and sufferings of the Nisse are reduced to the ableist concept of degenerative and abnormal state of mind and body as victimized by unjustified state power and violence.
Hence, their physical and mental impairments are perceived as, and equivalent to, a corrupted, unhealthy identity against the backdrop of the 1950s nuclear family ideology of depending the home front of Cold War domesticity. In other words, the Nisei’s both mental and bodily disability is looked at as what contradicts the national ideals of American nuclear family, which was white-dominant, male-centered, and heterosexual in terms of race, gender, and sexuality. My scholarship has usually been carried out in relation to examining ways in which Asian Americans’ lived experience is portrayed not only underrepresented but also “devalued” and “de-sanitized” in their literary works in the early Cold War years of the 1950s and 1960s. Along this line of thought, this presentation focuses on the pathological phenomena of the Asian American body and mind in Okada’s novel. It locates it as the symptomatic sites of their representational disability embodied as a consequence of the United States’ Cold War investment in the biopolitical well-being of the state in favor of white heterosexual nuclear families, whose ideological effects not only discriminate but also victimize, inferiorize, and criminalize the other forms of racial and sexual identity.
TITLE: Neglecting Hester’s Health: Suzan-Lori Parks’ critique of African American Women’s Healthcare Encounters in In the Blood
SPEAKER: Phyllisa Deroze
Pulitzer-prize winning playwright Suzan-Lori Parks’ play In the Blood critiques the exploitation of African American women navigating systems of support via the play’s protagonist Hester La Negrita, inspired by Nathaniel Hawthorn’s Hester Prynne in Scarlet Letter (1850). Hester La Negrita’s “scarlet letter” is symbolized through her dark skin tone, socio-economic status, illiteracy, and homelessness. The plot follows Hester, a single mother with five children from five different men, across nine scenes as she encounters religious, social, and medical systems of support. By analyzing Hester’s health narrative, this paper aims to highlight Parks’ naturalistic approach to commenting on the healthcare system, the consequences of silence surrounding African American women’s health, and their vulnerability when facing systemic racial and patriarchal discrimination.
TITLE: Living with and in Disability and Illness: Dis/artful theorizing
SPEAKER: Patty Douglas
This paper presents and analyzes seven short videos created by women and trans people living with illness, bringing together the health humanities with multimedia storytelling, cultural studies and disability arts to generate new possibilities for living dis/artfully with and in illness. We experiment with multi-media storytelling to expand the kind and quality of available stories about difference (broadly defined) that exist, created through workshop processes that draw on and contribute to accessibility practices from the field of disability arts, which seeks to make art accessible and aligns with the disability rights and justice movements (Chandler, Changfoot, Rice, LaMarre, and Mykitiuk 2018; Rice and Mündel 2019). Multimedia videos created by community members, researchers, care providers, artists and activists through our disability-artist led workshops are short films that pair images, video clips, ambient sound, visual art, voice, music, movement and more to represent complex sensorial experiences that often elude linear narrative structures (Rice, Chandler, Liddiard, Rinaldi and Harrison 2018). Using ideas from cultural studies, phenomenology and body becoming/new materialist theories we disrupt negative ontologies of non-normative embodiment and open possibilities for living well with illness with and for non-normatively embodied individuals. Through our approach, we call for a new kind of attention to illness and disability as a fundamental—creative, relational, sometimes pain-filled and unwanted, even sensuous and artful—part of human experience. The paper offers new scholarly tools at the intersection of health humanities and cultural studies to grapple with the explosion of representations of the ill and medicalized body; generate knowledge about self and world in everyday life across difference; and offer complex theorizations of living well with illness while not evacuating experiences of impairment, suffering and pain.
TITLE: A Diabetes Diary: Towards A Daily Phenomenology
SPEAKER: Jonathan Garfinkel
In our need to return to the body (Merleau-Ponty 1994), philosopher Havi Carel suggests a phenomenological approach to illness with an emphasis on the patient experience (2016). As a Type One Diabetic (T1D) for over thirty-three years, I feel drawn to this perspective. Through countless daily decisions needed to survive, the chronically ill become intimate specialists of the body, holding a knowledge wrought of experience, spontaneity and invention the medical practitioner has little access to. For the past eight months I have been writing A Diabetes Diary, a literary memoir project that will be the core of my PhD dissertation at University of Alberta. It’s also a literary writer’s response to the neglect of the patient narrative. The diary is in part a reflection on living with a revolutionary technology called “Loop”. Thanks to this Do-It-Yourself bio-hack, created with open source software and instructions downloaded from Facebook, T1Ds such as myself have built an app on their iPhones that let their Continuous Glucose Monitors (CGM) and insulin pump work together in real time with a sophisticated algorithm created by one of its FB community members. This is the Holy Grail of T1D, the Artificial Pancreas, and there’s nothing like this on the market. Am I, as Donna Haraway might intone, a cyborg of our century (1985)? If so I’m a practical cyborg, living with a host of technological intrusions, technical anomalies and DIY hybrids. In this paper I would like to reflect upon specific discoveries of A Diabetes Diary by drawing on several excerpts. What I have come to understand is that my journey to becoming a practical cyborg in 2019 has been, in many ways, a mediation and encounter with the uncanny. Borrowing from Heideigger’s concept of “unhomelikeness-in-the-world” (1996), my experience of das unheimlisch is both a response to technological changes as well as a symptom of the day-to-day illness experience. It is my hope that these discoveries will open conversations into how we approach illness, as well as challenge our very belief in a life-story. For as I grow into my own flesh, medical technology grows into my diabetic body, and with it, the question: Where does my body begin and end?
TITLE: Do you have to be addicted to get attention in the house?
SPEAKER: Irene Geerts
For most of the 20th century, family members of people with psychiatric and/or addiction problems were seen by mental health professionals as having caused those problems in their loved ones. As a result, these relatives were met by many professionals with suspicion and kept out of decisions about treatment and care, even though they shouldered a lot of the burden of care. After 1960, in many Western countries these relatives started social movements that demanded their rightful place at the deliberation table with the patient and the psychiatrist. In the early 1980s, that happened in The Netherlands too. (Auto)biographical stories from parents, siblings and life partners of people with psychiatric and/or addiction problems were powerful means to put the movement’s message forward. The message of one of the organisations in the Dutch movement, Parents Of Drug-Addicts, was taken to the next level when bestselling author Yvonne Keuls based her novel De moeder van David S. (‘The mother of David S.’) on the stories these parents told her. The book is a harrowing account of the mother of a family that suffers from the drug addiction of the adolescent son. Soon after it was published in 1980, it not only became a bestseller, but also part of the drug debate in The Netherlands.
In my paper, I investigate the perspective on drug addiction and the situation of the relatives of drug addicts that is put forward in The mother of David S., the literary means Keuls used, how her novel was received and the impact it had. As a literary work that propelled a social movement in health and influenced a historical public health debate, The mother of David S. is a fascinating case to offer insight into the interplay between a literary work and a health issue that touched many.
TITLE: African American Women, Ordinary Writing, Extraordinary Hope, and Survival After 1970"
SPEAKER: Rhonda Gonzales
The last words of My True Life Story, by Willie Lee Brown Smith (1906-1983), states: “She was so hurt. I still have faith that I will find her one day. Four little girls were hurt, but in a different way.” Our coauthored presentation analyzes an extant copy of the 28-page hardcover, published in 1974 and an heirloom in Gonzales’s spouse’s family. Copies sold originally for $3 as a division of Carlton Press’s Hearthstone Books. Our presentation explores African American women’s use of Critical Race counternarrative, of what Jennifer Sinor has called “ordinary writing,” of Black print culture, self-representation, and migration to resist systemic poverty, white supremacy, state dominance—structures oblivious to their deadly force and integral to medical establishments theoretically designed to heal all, including lost and “hurt” persons of underrepresented groups.
We examine Smith’s use of Black feminist Critical Race theories, and pay particular attention to ways letters and telegrams became the essential means she used to communicate with other Black women she knew in the 1950s and 60s, especially her two biological sisters. We read My True Life Story as detailing the conference themes of embodied vulnerability to hegemonic biopower, emotional and psychological illness, and the search for healing and empowerment.
Gonzales’s interviews with two generations of Smith’s descendants situate the production of the book and Carleton Press within 20th-century Black print culture. Moody contrasts Smith’s self-published life narrative with Zora Neale Hurston’s Dust Tracks on a Road (1942), and reads Smith’s privately published life story at age 68 against the recently recovered extant writings of Kathleen Collins, Notes from a Black Woman's Diary (2019). Collins’s private diary entries, along with her early 1980s’s famous films and plays, echo Smith’s local themes: loneliness, trauma, starvation, intelligence, and determination.
TITLE: “Tu ne m’as rien donné pour guérir”1: Vulnerability and Hospitality in Contemporary Poetry by Women in Quebec
SPEAKER: Dominique Hétu
This paper sets out to investigate the poetry of Roseline Lambert, Mélanie Landreville, and Carole David, three poets from Quebec whose collections each provide a relational measurement and felt understanding of violence and pain that challenge dominant scripts of care and healing. Lambert, in Clinique (2016), investigates mental health issues and self-care through the space of the asylum in a collection focused on the medical body, physical and psychological wounds, and a cumbersome medical system. Landreville, in Vertiges de l’hospitalité (2016), zeroes in on vulnerability, on what happens when a subject in pain, a “corps-morsure,”2 stays close to the source of suffering and dwells on anger and assertion rather than on fragility and invisibility. And, in L’année de ma disparition (2015), David’s feminist poetry scrutinizes grief, shared responsibility, armed female bodies, and absence through a language of the wound/ed, - a “blessure cousue main.”3 Lambert, Landreville, and David’s shared concerns about embodied suffering and the power of words to reclaim space uncover a promising discourse on vulnerability through poetic work. They each explore, through poetic voices that are combative, angry, and noncompliant, the emotional and physical experiences of violence against women, along with the lack of hospitality of living spaces in which their vulnerable bodies move. With this paper, I am thus interested in showing how their poetic language and strategies offer new ways of interrogating care-related (medical, emotional, embodied) and patriarchal violence, a network of “barbelés fabriqués soigneusement”4 that shape, disrupt, and haunt the bodies found in the collections.
TITLE: Reema’s Boy and the Limits of Western Narratology: Re-Thinking Ethnographic Practice and Medical Narratology in Gloria Naylor’s Mama Day
SPEAKER: Esther L. Jones
The western enlightenment narrative of the “narrating medical subject” as individualized and isolated fails to adequately engage the differing ontological and cosmological frameworks informing narrative approaches for many cultures across the globe. In particular, African American scholars and writers routinely challenge the expectations of western narratology and assert the rich oral-based story-telling traditions of African America in written, oral/aural, and performative modes that authorize distinctive modes of “storying.” These practices demand a shift in how to “hear” the stories of illness, of health, and the survival strategies that reside betwixt and between history, culture, literature, and spirituality. This paper will examine Gloria Naylor’s critique of western ethnographic narratological practice in her novel Mama Day, exploring an alternative African American narratology informed by a spiritual cosmology that opens space for an expanded view and understanding of narratology in health and medicine.
TITLE: Positive Status/Positive Classroom: The Opportunity of Disclosure
SPEAKER: Eric Jorgensen
This paper will advocate the pedagogical virtue of teaching by disclosure. As an artist, scholar, and international aid worker, my research into the American AIDS play comes from multiple perspectives emerging from theatrical practice, performance theory, and epidemiological reality. With this academic clout, I am valued as someone who has things to say about the topic. But in the classroom, discussions of HIV/AIDS reality by way of literature, theory, artistic practice, cultural history, and global interventions maintain HIV/AIDS as a “then” or an “out there.” This often reinforces the invisibility of the disease and exposes the need for a cultural re-remembering. Theater, as a live medium, provides a living presence to engage that re-remembering. But discussions of theater are not in and of themselves theater. As someone who lives with HIV, disclosing my serostatus to my students is an opportunity to bring the understanding of HIV/AIDS into the embodied here and now.
Depending upon geography, most students today have little first-hand knowledge of the HIV/AIDS pandemic. It is invisible and livable. It is something that happened and then changed. It is something that continues but elsewhere. Students are not at fault because of their gaps in knowledge of the epidemiological and cultural timelines; time itself has positioned HIV knowledge as a generational divide. For me, on this topic, I felt compelled to begin those discussions from my own perspective: HIV+ in 2019. I am someone who came to understand his place in the continuum of HIV/AIDS by way of the American theater. And personalized understanding begins to make the esoteric concrete - something with which a personal relationship may be forged.
I will specifically address my experience of teaching an upper-division undergraduate seminar course, “American Drama and the Performance of HIV/AIDS.”
TITLE: Your Brain on Fiction: A Bridge between neuroscience and humanities
SPEAKER: Fernanda Pérez-Gay Juarez
Through a series of black marks on a sheet of paper or a screen, literature manages to build entire universes: transport us to other times, show us unknown places, introduce us to characters with whom we will never interact in real life; make us live adventures and suffer tragedies and, all while sitting alone, share the feelings and mental states of others. How is this possible? What happens in our brains when we read a book? Why do we do it or how does it benefit us? There is accumulating evidence from neuroscience to affirm that literature activates very diverse networks in the brain, from the classic areas of language processing to the diverse circuits (including sensory and motor systems) in which “meaning” is encoded and retrieved in the brain1. Furthermore, researchers have shown that the neural circuits processing certain situations through written fiction (for example, a social exchange between characters) overlap with brain circuits that process similar situations in real life. To date, cognitive neuroscience has provided biological evidence for the idea that literature simulates conscious experience2, and that fiction can improve our understanding of ourselves, the world and others3. In order to fully exploit the enormous potential of these discoveries, a transdisciplinary exchange between neuroscientists, literary art professionals and health practitioners is becoming urgent. Branching from a science broadcasting project called SINAPSIS: Conexiones entre el arte y tu cerebro, this paper will summarize neuroscientific evidence behind the benefits of reading fiction, aiming for a dialogue between literature, the arts, neuroscience and mental health. In this way, this paper falls within the scope of the conference, more specifically within the topic of transdisciplinary approaches to health and medical humanities.
TITLE: Re-Marking the Body: Online Representations of Mastectomy Tattoos as Breast Cancer Memorialization
SPEAKER: Reisa Klein
My presentation focuses on the emergent digital practices of breast cancer ‘survivors’ who use tattoos in response to post-operative surgery and implications for rewriting biomedical narratives through the mobilization of an intersectional digital feminist body politics. Specifically, I examine how tattoos, which have been traditionally stigmatized as a disfiguring, hyper-masculinized and self-mutilating are being re-appropriated into a "breast cancer culture" (King, 2006) as a form of self-care to mask post-operative scarring through areola pigmentation or nipple tattoos as well as through what are referred to mastectomy tattoos: large artistic tattoos on reconstructed or non-reconstructed breasts. On the one hand, I focus on how online discourses of tattooing practices are drawing women's bodies into an emergent biopolitics (Foucault, 1990; Rose, 2001), concerned with the risk management of a biomedicalized subject where women are encouraged to care for their health through informed decisions via online media (Pitts, 2004) and through consumption and beautification techniques in line with normative femininity, including breast reconstruction (King, 2006). On the other hand, I consider how online media can potentially operate as sites wherein women can retell the stories of their bodies through new practices of inscription that disrupt biomedical, patriarchal, heteronormative, white and able-bodied reconstruction narratives. Through tracing online discourses of these tattooing practices in online expert biomedical and popular cultural discourses, I examine the ways in which competing biomedical, pop cultural and feminist narratives on breast cancer intersect to contribute to an "awkward feminist politics" (Smith & Stehle, 2016) where neoliberal and post-feminist fragmented body displays are utilised in the creation of new visibilities, subjectivities and networked collectivities. Through digital representations of mastectomy tattoos women become awkward “cyborgian-goddess assemblages” (Puar, 2012) a hybrid intermeshing of digital-biological-medical-mechanic-artistic bodies and technologies that do not quite ‘fit together’ or ‘fit in.’ These assemblages generate new debates about what in fact is a “breast,” thereby unsettling a politics of reconstruction and essentialised correlations between gender, rehabilitation and health. Through online circulations of these tattooing practices, women are not trying to erase breast cancer and its scars but are using ‘chosen scars’ to re-memorialise breast cancer in new ways.
TITLE: Understanding Illness: Wrong Impressions in the Midst of Epidemic
SPEAKER: Steven Kurtz
In Arthur Kleinman’s work on illness narratives, he argues that each experience of chronic disorder is embodied in the particular life and circumstances of the patient, taking on significance from the sick person’s world. He writes about the efforts of the patient and his/her entourage to turn a natural occurrence (the illness) into a domesticated, mythologized, and cultural experience. This paper explores how that process unfolds in the particular circumstances of Philippe Besson in his novel, Un certain Paul Darrigrand. This autobiographical text, an account of the author’s affair with the title character, takes place at the intersection of two other major events: the height of the AIDS crisis and Besson’s diagnosis with thrombocytopenia, or dangerously low levels of blood platelets. With few exceptions, Besson keeps his illness to himself, repeating several times throughout the novel at pivotal moments that by saying nothing, it’s as if the situation doesn’t exist.
Besson’s efforts to maintain control through silence result in making his illness culturally intelligible. However, he can see in the eyes of people he encounters that they are misreading him as having AIDS and placing him within the corresponding cultural narrative. Besson’s situation brings forth the questions: What can Besson’s experience of embodying an illness (the wrong one, at that) in the eyes of others teach us? What are the implications of this example of losing control of one’s narrative on illness writing?
TITLE: Archival Intertextual Interpretations of Black Women’s Social Health
SPEAKER: Alexis McGee
Joy DeGruy argues that trauma imposed on Black bodies can last and transmute over generations; thus, narrativizing health would do well to embrace the diverse literacies practiced to communicate such illnesses and traumas. Beyoncé’s contemporary sampling of Malcom X’s speech “Who Taught You to Hate Yourself” is not the first iteration of how contemporary artistic endeavors voice such generational, public oppressions. Black woman to publicly decry the social ills imposed on Black communities. In fact, if we look back to early 20th-century blues singers like Ma Rainey we can glimpse into this intertextual public voicing of complex relationships between social ills, identity-making, and community building. Here, I argue that the archivist adds a third dimension to publicly constructing identities and narrativizing the health and trauma of Black communities. By presenting subjective information, the archivist (re)situates the relationship between archive, text, community, and genre by choosing what to include and what to focus on particular aspects of one’s identity such as the “blues-womanness” of Ma Rainey rather than investigating themes like addiction. I specifically look at the Sandra Lieb collection at the University of Mississippi and interviews with Rainey to examine how (re)reading the histories through a humanities frame can broaden the scope of health narratives to a multivocal, even artistic, endeavor. In doing this, this paper asks, What can the archive do for health sciences and health studies? What methods of research can health studies learn from the archival (and) literary arts? What do archives tell us about literacy practices, social healing, and community building?
TITLE: African American Women, Ordinary Writing, Extraordinary Hope, and Survival After 1970"
SPEAKER: Jocelyn Moody
The last words of My True Life Story, by Willie Lee Brown Smith (1906-1983), states: “She was so hurt. I still have faith that I will find her one day. Four little girls were hurt, but in a different way.” Our coauthored presentation analyzes an extant copy of the 28-page hardcover, published in 1974 and an heirloom in Gonzales’s spouse’s family. Copies sold originally for $3 as a division of Carlton Press’s Hearthstone Books. Our presentation explores African American women’s use of Critical Race counternarrative, of what Jennifer Sinor has called “ordinary writing,” of Black print culture, self-representation, and migration to resist systemic poverty, white supremacy, state dominance—structures oblivious to their deadly force and integral to medical establishments theoretically designed to heal all, including lost and “hurt” persons of underrepresented groups. We examine Smith’s use of Black feminist Critical Race theories, and pay particular attention to ways letters and telegrams became the essential means she used to communicate with other Black women she knew in the 1950s and 60s, especially her two biological sisters. We read My True Life Story as detailing the conference themes of embodied vulnerability to hegemonic biopower, emotional and psychological illness, and the search for healing and empowerment. Gonzales’s interviews with two generations of Smith’s descendants situate the production of the book and Carleton Press within 20th-century Black print culture. Moody contrasts Smith’s self-published life narrative with Zora Neale Hurston’s Dust Tracks on a Road (1942), and reads Smith’s privately published life story at age 68 against the recently recovered extant writings of Kathleen Collins, Notes from a Black Woman's Diary (2019). Collins’s private diary entries, along with her early 1980s’s famous films and plays, echo Smith’s local themes: loneliness, trauma, starvation, intelligence, and determination.
TITLE: More than Metaphor: Materializing Autoimmunity in Writing, Research-Creation and their Critical Entanglements”
SPEAKER: Emilia Nielsen
When Susan Sontag (1978) first objected to the use of metaphors to describe disease she was concerned that cancer and tuberculosis took on additional symbolic weight when described in metaphorical language. Disease metaphors, she maintained, could function to obscure the reality of sickness thus shaming patients and silencing illness experience. Yet we are left to consider Sontag’s generative metaphorical descriptions as she proclaims in Illness as Metaphor’s opening sentence that “Illness is the night-side of life, a more onerous citizenship” (p. 7). But not all disease metaphors are rich in imaginative possibility. For example, Sarah Manguso (2008) writes in her memoir The Two Kinds of Decay, “All autoimmune diseases invoke the metaphor of suicide. The body destroys itself from the inside.” (p. 25). Indeed this type of descriptive language, compete with metaphor of suicide, has become commonplace in describing the mechanism in more than 80 distinct diseases where the immune system, normally protective, attacks healthy body tissue. Writers like Sarah Manguso, Susannah Cahalan, and Meghan O’Rourke grapple with this when they describe in vivid detail the terrifying realities of both acute and chronic autoimmunity. In this paper then, I will explore the limitations of this metaphor especially for those diagnosed, treated and living with autoimmune disease. But in so doing, I am not calling for the end of metaphorical language where disease description is concerned. In fact, I question how best to describe autoimmune disease, which is nearly always invisible except in the expression of symptoms. In addition to considering the autobiographical writing of authors such as Manguso, Cahalan, O’Rourke, and others, I will share my own writing which grapples with living with autoimmunity. Specifically, in writing against the metaphor of suicide I have turned to various creative methods in a larger research-creation project entangled in scholarly study, creative writing practice and purposeful experimentation.
TITLE: The Otherness of Fat: An Intersectional Psychotherapy Story
SPEAKER: Hilary Offman
Intersectionality refers to the insight that the organization of power is better understood as being shaped, not by a single axis of social division, but by many social determinants that work together and influence each other. While most physicians commonly encounter these determinants in clinical work, modern medical practices have not sufficiently addressed how they impact the treatment of the body in everyday life. Even when viewed through the lens of narrative medicine, stories of illness are frequently one-sided and neglect an exploration of how differences in culture, power, and privilege intersect to affect health.
There has been scarce interest in the application of literary studies for the purpose of interdisciplinary reflection on the fate of the contemporary medicalized body. We need literary narratives that include not only stories about treating diverse medical bodies, but also an exploration of how being different impacts that treatment. But in order to truly facilitate new interdisciplinary understanding about the subjectivity of the patient, literary examples must also incorporate intimate self-awareness that introduces us to the subjectivity of the treating physician. A psychotherapy story that includes details of a psychiatrist’s own participation in the creation of her patient’s health narrative can serve to bridge the gap between literary studies and the health humanities. In medicine, knowledge about body size has been construed as a given that requires no further examination. Yet for many, derogatory assumptions about body size interfere with the pursuit of health care. Furthermore, body size intersects significantly with gender since fat women are subject to specific forms of bias and discrimination not experienced by (those perceived as) fat men.
I present a new form of nonfiction medical story about what happened when the stigma of being a fat female physician introduced intersectional shame into my treatment of a fat female patient.
TITLE: Oral Narrative Practices of African American Women as Counterhegemonic Health Practice
SPEAKER: Sheri Parks
Ethnographic studies reveal African American women’s storytelling practices have a profound effect on experiences of health and well-being. On the one hand, seemingly affirming stereotypes, such as that of the strong black woman, suggest extraordinary resilience and capacity to cope in the face of systemic racial and gendered stress and trauma that those who adhere to this narrative embrace; on the other hand, embracing such stereotypical narratives can constrain the expectation that black women may need support for illnesses caused by stress brought on by the intersecting pressures of racism and sexism. This paper explores the ways in which African American women’s storytelling practices negotiate these tensions in literature and culture
TITLE: The dysmorphomanic language in Vladimir Sorokin’s works
SPEAKER: Katerina Pavlidi
On the eve of the Soviet Union’s demise, the Russian postmodernist author and playwright Vladimir Sorokin (1955 -) wrote the controversial play Dismorfomaniia (1990). By doing so, he envisioned the titular mental disorder, which is characterised by the obsessive delusion that a specific bodily part is deformed, on the Soviet stage, which at that point was still controlled by the State. Considering Sorokin’s texts and public statements, which denote that his works explore the interplay between bodiliness and text—and by extension language—I argue that the distortion of the bodily form in Dismorfomaniia functions as a synecdoche for the distortion of language itself. In this paper, I contemplate on the notion of dysmorphomania, especially in the context of the late Soviet Union, and by drawing on texts produced by Sorokin at the same period of time, I show that the author produces a new language that acquires dysmoprhomanic traits. Furthermore, I argue that the new language that Sorokin produces does not depend on its logical decoding, but on the senses that it activates and the emotions that it provokes. Thus, the function of language shifts; from an abstract system of signs that communicates information, it becomes a material entity that imposes sensations on the reader or on the spectator instantaneously. In order to acquire a deep understanding of this idea, I use Antonin Artaud’s theory on theatricality, while I also draw on Gilles Deleuze’s theory as developed in his book The Logic of Sense. Finally, I address theoretical questions such as whether a tool as conceptual, rational and immaterial as language, can construct a literary reality that would anchor itself in bodily states, such as senses and emotions, rather than meaning.
TITLE: Writing New Bodies: Building a Digital Fiction for Body Image Bibliotherapy
SPEAKER: Megan Perram
Body image concerns affect the well-being of a generation who are coming of age immersed in digital culture. This is particularly true for young women and gender non-conforming individuals of diverse intersectional backgrounds who regularly confront appearance-related pressures. The “Writing New Bodies” project (“WNB”; SSHRC IG 435-2018-1036; Ensslin et al. 2019; forthcoming) addresses these issues by developing a literary story game (digital fiction; “DF”) for body image bibliotherapy. The planned DF encourages emotional and verbal engagement with various challenges facing young people today, including cis- and heteronormative gender relations, racism, anti-fat attitudes, ableism, and familial influences on the ways women “ought to look” (Rice, 2014). WNB uses interactive digital storytelling that deconstructs normative conceptions of power to help reader/players build resilience to external and internal body-related pressures. WNB’s methods of community co-design and feminist participatory action research (Gustafson et al., 2006) engage woman-identified and gender non-conforming individuals ages 18-25 in envisioning a world where they feel at home in their bodies. In four participant workshops held in April-May 2019, the WNB team worked with a diverse, intersectional audience using methods of free writing, small group discussions, and multilinear game design. Workshop intervention called on participants to hyper-textualize body-related experiences and explore diverse options for an ontological reimagining of appearance-driven neoliberalist pressures to create a tool that can be utilized in a therapy context. The findings from the workshops, along with some digital fictions design elements, will be discussed including themes, technological platforms, and narrative elements.
TITLE: Care and Power Dynamics in Marie-Claire Blais’s Soifs Series
SPEAKER: Stéphanie Proulx
Consisting of ten volumes published between 1995 and 2018 and described by Sonia Sara Théberge-Cockerton as the result of an “esthétique du collage”, the Soifs series by Marie-Claire Blais stages more than two hundred characters whose destinies and flows of consciousness intertwine. Concerned with the fate of marginalized populations and forgotten victims of history, whose memory and dignity Blais seeks to restore in her most recent work, the Soifs series is filled with aging protagonists and ill characters whose agency and relationship to others are endangered by their declining health and their new state of dependency.
That being said, if disease is very much pervasive in the Soifs series – many of the core characters have chronic or degenerative conditions –, hospitals are almost nowhere to be found on the paradise island onto which the story takes place. Blais’s series prevents any contamination of the fictional space by the medical institution and its discourse, which does not always lead, however, to the establishment of a more authentic relationship to the Self or the Other – on the contrary. While implicitly questioning the dehumanizing potential of the medical discourse – its very few representatives are portrayed as unethical, dangerous even –, Blais also exposes the risks of relegating care to the private sphere. As I will try to demonstrate in this paper, Marie-Claire Blais’s depiction of the complex relationship between a sick, but nevertheless privileged White woman and her uneducated Black caretaker (Dans la foudre et la lumière, 1999; Augustino et le choeur de la destruction, 2005) shows that power dynamics outside the medical institution are just as prominent and as violent. Based on ethics of care (Kittay, Nussbaum, Glenn) as well as on disability studies (Wendell, Davis), my analysis of the second and third volumes of the Soifs series will seek to expose the failures of a type of care which has often been presented as a more humane response to the declining autonomy caused by age and illness.
TITLE: Multimedia Storytelling and Disability Arts: Reclaiming Ill Bodies
SPEAKER: Carla Rice
This paper reflects on multimedia storytelling as a creative methodology experimenting at the intersection of materiality and language, bodies and stories, to expand the kind and quality of available stories about difference (broadly defined) that exist in the world. Workshop processes that form this research assemblage and that draw on and contribute to accessibility practices from the field of disability arts, which seeks to make art accessible and aligns with the disability rights and justice movements will be the material considered for this paper (Chandler, Changfoot, Rice, LaMarre, and Mykitiuk 2018; Rice and Mündel 2019). Multimedia videos created by community members, researchers, care providers, artists and activists through these disability-artist led workshops are short films that pair images, video clips, ambient sound, visual art, voice, music, movement and more to represent complex sensorial experiences that often elude written language or linear narrative structures (Rice, Chandler, Liddiard, Rinaldi and Harrison 2018). The paper argues that the storytelling method, since it opens space for intra-relationality through multiple sensing channels, is fertile ground through which to experiment with disrupting the normative human standard. For this paper, intra-relational means the insight forwarded by body becoming and phenomenological theorists that “bodies are formed within a relation rather than formed ‘across’ or ‘between’ already-formed bodies” (Fritsch 2015, 52). The importance of this approach is the transformative potential of multimedia storytelling as a method for the health (post)humanities for revisioning illness by opening up space to generate artful representations of the complexities of living with illness that incorporate the bodily knowledge and vitality of ill people themselves.
TITLE: Endometriosis as a Social Problem: Activism, Medicine, and the Relevance of Gender
SPEAKER: Alekzsandra Rokvity
Endometriosis, often falsely called an illness of the uterus, is estimated to affect 1 in 10 women, taking an average of 10 years and 8 physicians to diagnose, finally offering neither answers to the causes of the illness nor a cure. Known about for centuries but largely neglected, the condition became of interest to the medical community only in the last decade, with recent research showing that the main reason for the detrimentally slow diagnosis being the refusal of doctors to believe in women’s pain. A spike in interest surrounding the condition comes simultaneously with the rise of menstrual activism. Exploring the menstruating body as a cultural text, this feminist movement draws attention to the serious socio-economic, psychological, political, and medical consequences the denaturalization of the female body has. Among other things, this has created a space for an abundance of literature exploring the experience of living with endometriosis, shedding light on a once invisible illness.
With my work, I aim to prove that endometriosis is a social and not a medical problem. Treating the ill body as a cultural, rather than a medical text, proves highly revealing of the structural sexism in our society. Facts about the illness and the treatment of patients foreground the following issues: the Othering of the female body, the absence of women in medical sciences, the absence of women in policy making, the stigmatizing social discourse surrounding menstruation, and the tabooization of female sexuality. A discussion and resolution of these issues are crucial for changing the quality of the healthcare women are provided, as well as making progress in the treating, and hopefully curing, illnesses such as endometriosis.
This paper explores the connection between menstrual activism, emerging art and literature, and the (consequential) rise in medical research in the area of female reproductive health.
TITLE: Storytelling as Atypical: Graphic Medicine as the Intersect Between Medical Self-Writing and Literary Analysis, Seen in Georgia Webber’s Dumb
SPEAKER: Rolando Rubalcava
While memoirs and particular graphic novels address issues of illness, it is through the literary analysis of Dumb that explores the rhetorical strategies graphic medicine can offer to both writers of medical memoirs and scholars in Medical Humanities. In her narrative, there is a shift from self-writing to a metanarrative arc that offers insight into the writing and creative process, ultimately advocating for self-writing and the broadening of storytelling mediums. This shift is the intersection that allows writers and readers to contemplate how narratives can be both worthy of literary analysis and empowerment. Through the multiple examples of positing the reader in her position, as a patient, woman, disabled body, the reader learns the multiple ways of identifying with the protagonist, building on the original goals stated in Rita Charon’s Principles and Practices of Narrative Medicine. When reading Charon’s text, empathy is at the heart of her efforts, teaching readers how to identify with writers, or speakers, artists, anyone sharing their narrative through the medium of their choice. I wish to argue how the study of graphic medicine can both elevate, expand, and add breadth to the academic discussion on self-writing, while still grounded in literary analysis.
TITLE: Scaling Pain: The Dark Side of Pain as the 5th Vital Sign
SPEAKER: Audrey Shafer
Pain has a complex, politically-charged history, which includes punishment, voyeurism, justification, diminishment, and martyrdom. Similarly, pain relief has a history of gendered, racist, and otherwise biased beliefs and practices. One example is the historical meaning of pain during childbirth, its relationship to punishment in Judeo-Christian-Islamic scripture and a major shift in attitude after Queen Victoria opted for chloroform during the birth of her eighth child in the mid-nineteenth century.
When the healthcare facility regulator, The Joint Commission (formerly the Joint Commission on Accreditation of Healthcare Organization JCAHO, pronounced jay-co), released new standards at the turn of the 21st century requiring ‘measurement’ and recording of pain assessments every time vital signs (heart rate, blood pressure, respiratory rate and temperature) are measured, the initiative was viewed as a humane improvement of patient care.
However, with poor, naïve, or intentionally blinded understanding of the politico-economic forces of the pharmaceutical industry, the prescriptions of opioids, particularly oral, rose dramatically, contributing to the increased availability of narcotics in homes, a factor in the opioid epidemic.
As an anesthesiologist, I inject narcotics and other analgesics into my surgical patients’ bloodstreams. Tensions are created by the mix of patient expectations, patient pain and drug use histories (and judgement of those histories), team dynamics, institutional pressures to conform to ‘standards of care’ such as pain levels on discharge from the recovery room, and anecdotal experience. I will focus on how the cultural histories of pain and analgesia, including notable writers on the inexpressibility of pain, relate to the current regulatory necessity to frame pain assessment as the 5th vital sign, namely asking for a one number self-assessment of pain level by the patient. I pay attention to language – ‘vital,’ ‘scale,’ ‘drug’ etc. – as it illuminates and complicates relationships of body, subject, subjectivity, object and objectivity, vis-à-vis pain.
TITLE: Re-visioning Illness Experience as Dis/Artful Becomings
SPEAKER: Areej Sidiqui
This paper presents and analyzes one multimedia story (3:14 minutes) about chronic illness made by gender queer artist mel g. campbell through a larger research creation project. The purpose of the paper is to consider how story might re-vision illness in more complex and generative ways using the resources of the health (post) humanities, new materialism and disability arts. The paper argues that the ways in which illness emerges in mel g. campbell’s story (alongside other multimedia stories on the project) is materially, politically and relationally consequential, gesturing to a discursive-material intra-relationality that generates new and more complex knowledge about body, self, world (Barad 2003; Braidotti 2013; Douglas, Rice & Siddiqui Forthcoming). Three themes are explored to support the argument: 1) relationality and rupture, or the uncanny experience of living with bodies/minds that do not fit while simultaneously reclaiming fleshy knowledge of illness, re-storying life as worth living and speaking back against exclusionary systems; 2) attending to the stubbornness of ill bodies and pain as a challenge to disability studies to incorporate bodies-in-pain and medical humanities to unsettle lingering ties to coherent illness narratives and restitution; and 3) ill bodies as a site where conflicting and contradictory discourses coalesce. That is, between the push and pull of medical intervention and pharmacological treatments that frame bodily selves as pathological, and engagement in art that re-stories illness and pain, storytelling forges new storylines. The significance of the paper is to invite both insider and outsider reflexivity around illness as particularly important to open possibilities for living well with illness in the midst of proliferating representations of the ill and medicalized body haunted by the humanist human and life-limiting cultural impulse of cure.
TITLE: La Visibilisation de la santé: Health in the Streets in Senegalese Urban Arts
SPEAKER: Julie Van Dam
In this paper, I explore the increasingly prolific and exceedingly visible cultural arts of health activism, health promotion, and disability awareness in contemporary Senegal. Against the backdrop of a state-sponsored “invisibilization” of disability and people with disabilities and the health insecurities of structural adjustment policies of the 1980s and 90s, a host of cultural actors perform la visibilisation de la santé across a spectrum of media in exceptionally innovative ways. What I term la visibilisation de la santé refers to the dual process of raising awareness and rendering visible a range of issues surrounding health for the community, whether in the streets, online, on YouTube, or on screen. This project will thus engage with four main visual media— cinema, television, graffiti, and to a certain extent other visual arts such as painting and mixed media—while allowing for the necessary overlapping medium of hip hop, which I will argue is visual due to its regular live performance in and around Dakar as well as its strong YouTube presence. I bring these media together because I contend that they all employ visual means of communicating with their localities and with the larger global community through artistic practice. I explore these emerging in order to make the case for their crucial role as counterpoints to the institutional and historical invisibilization of disability, debility, and illness in a postcolonial country like Senegal. I hypothesize that this kind of collaborative urban art not only reclaims a visible space for health, but ultimately catalyzes and performs an African-centered self-healing that is cultural and material in nature. These cultural interventions not only contribute to an epistemological shift from the West to Africa, but may very well affect material change in health (physical and/or psychological) and the body, both in the viewer and the artist her/himself.
TITLE: Picturing the Postcolonial Publics of Public Health: Making Up People in the Pages of Malawi’s Moyo Magazine
SPEAKER: Anna West
Public health is enacted upon publics—people (“populations”) variously constructed as subjects, citizens, agents of change, and even as obstacles to their own wellbeing. The discursive construction of these publics and the circulation of representations of so-called “target” or “beneficiary” populations amongst health professionals establish the conditions of possibility for carrying out particular kinds of intervention on particular kinds of people. I explore the constitution of publics and the link between representations and intervention forms through a critical reading of two decades of a Malawian periodical known as Moyo (“Life” in Chichewa). Published by the Ministry of Health’s extension service at irregular intervals since 1969, Moyo offered frontline health workers a channel through which to share experiences and lessons learned from small community health studies, hear from experts about the latest standard of care for common conditions, and debate health promotion approaches via letters to the editor. In this paper, I examine how text and images that appeared in Moyo between 1969 and 1993 construct the public that the early post-independence health system sought to serve. In Moyo’s pages, writers and editors evoked multiple and sometimes contradictory portraits of the mostly rural majority, who were cast as targets of health surveillance, as clients of traditional healers, as ‘backward’ and ‘uninformed’ farmers, as willing or recalcitrant subjects of traditional authorities, and as caring but gullible mothers of young children. Tracing the contours of these representations in relation to the intervention paradigms of the day offers a unique window on the dynamics of care and and control in Malawi’s one-party era and, I argue, enables a more critical assessment of links between the constitution of populations as appropriate objects of health promotion and the shape that intervention takes in the vast landscape of twenty-first century global health initiatives.
TITLE: Disrupted by Illness: An Opportunity for Re-worlding Bodies and Discourses
SPEAKER: Dorothy Woodman
It’s perhaps understandable to anticipate that a patient narrative will strive for coherence or stable meaning through the messy chaos and trauma of serious illness by understanding healing as a form of return and/or a journey toward moral, spiritual or psychological growth (Charon, 2008; Frank, 2013). This known world is populated by stable and legible bodies and selves, whereas the unknown is volatile and even chaotic. However, I will explore autopathographies by breast cancer survivors (itself a term in need of interrogation) who used fragmented and ruptured narrative forms associated with both trauma and postmodernism to represent their present moment (Frank, 2013) and, as I will argue, to re-situate the discourse of illness and healing as always-already constituted materially and discursively by fluid and dynamic relationships. Kathy Acker’s Eurydice in the Underworld (1998) and Eve Kosofsky Sedgewick’s A Dialogue on Love (2000) explore physical and psychological disruptions as queer mobilities within and across texts, selves, bodies and cultural discourses. Each writer has a unique relationship to their respective doctor or therapist, who is the one hand, foil for the character and representative of cultural ideologies constituting normative bodies and discourses, and on the other a postmodern co-creator of fragmented, ambiguous, and merging textual fragments. This paper is part of an emerging project to disrupt phallic hegemony and its attendant binaries, surveillance and disciplinary tactics, and to materialize mobile, adaptive, and capacious breast-logics through which to reconsider prevailing post-enlightenment medical and cultural discourses.