ABSTRACTS BY PANEL
Panel I.A, I.B, I.C, I.D, I.E
Panel II.A, II.B, II.C, II.D, II.E
Posters 1, 2, 3, 4, 5
Panel III.A, III.B, III.C, III.D, III.E
Panel IV.A, IV.B, IV.C, IV.D, IV.E
Panel V.A, V.B, V.C, V.D, V.E
Panel VI.A, VI.B, VI.C, VI.D, VI.E
Panel VII.A, VII.B, VII.C, VII.D, VII.E
Panel I.A
Data for Diverse and Inclusive Educational Environments
Erin Gentry Lamb, Sarah Berry, Amanda M. Caleb, Krisann Muskievicz
This roundtable panel proposes that data collection in health humanities education can be key to creating an infrastructure of inclusion at the baccalaureate level. One aim of health humanities is to examine critically various power relationships in health and healthcare in order to redistribute that power. However, are the educational and career preparation environments of health humanities structurally inclusive environments for students? This panel will use practice-based experience to identify major barriers to full participation in health humanities education and to demonstrate how the strategic use of data can increase participation, inclusion, and diversity from a structural and administrative standpoint. Following five brief presentations, we will engage attendees in structured discussion and brainstorming about data and inclusion at their institutions. We open with an overview of the environments of baccalaureate health humanitieseducation. Erin Lamb will address what we know about formalized health humanities curricula, the kinds of data that programs seeking administrative approval are often asked to provide, and tensions between the data meaningful to administrations and data meaningful to those of us in the field. Next, Sarah Berry will introduce a new, specific U.S. nationwide data codefor submitting Medical (and perhaps also Health) Humanities program data—what the new code is, how to use it, what data it will provide, and ways in which the data could be used in the future to enable student and program-level inclusion institutionally. Amanda Caleb will explore experiential learning(internships and service learning courses) in relation to issues of inclusion. At her small, Catholic, liberal arts institution, such experiences are highly valued and hours are tracked as one metric to evaluate the depth of the experience. Institutions value these high-impact learning practices―and they speak to the values of the health humanities―yet they present challenges when it comes to logistics of placements, accessibility, and diversity outside the classroom. Krisann Muskievicz will discuss the potential for Medical Humanities CIP data to support an Hispanic-Serving Institutionwith a significant population of first-generation students. Specifically, these data can widen interpretation of necessary and sufficient preparation for a career in health care, especially in terms of baccalaureate student recruitment and parent interfacing. Meaningful data about health humanities programming would clarify the impact of reflective inquiry, whether inclusive of or distinct from clinical experiences. Eve Browning will discuss the ways a health humanities curriculum can meet the needs of Latinas interested in medical careers, and contribute to increasing the numbers of Latinas in medicine. Latinx people are the fastest growing minority group in the U.S., but are under-represented in medicine; 3.4 percent of physicians are Latinx, and of these 3.2% are Latinas. Health humanities, with its early exposure to actual health issues in the curriculum, its emphasis on early clinical experiences, its mentoring programs, and its strengths in developing cultural competences, can begin to shift these demographics.
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Panel I.B
Refugees, Place, Narrative: Field Research, Literary Study, and Pedagogy
Joanna Michel, Rebecca Garden, Sandy Sufian
How does place function as an environment for healing trauma as well as addressing food sovereignty? What is the relationship between narratives and place? How do narratives impact our understandings of migration? In this panel, an ethnobotanist, a historian, and a health humanities scholar investigate issues of immigration, place, food, and healing from trauma through three different lenses: ethnographic fieldwork, literary study, and humanities pedagogy. This panel will investigate the relationship between qualitative research and literary study and consider how they might integrate in the classroom. It will also ask how the stories and other qualitative data collected in the space of an urban farm for refugees relate to the literary study of narratives published by and about refugees and find a place within the classroom. Together these papers consider how narratives of food, displacement, and belonging shape our practices and pedagogies. The first paper (Joanna Michel) focuses on ethnobotanical and anthropological field research and community engagement among Bhutanese and Burmese refugee farmers on an urban farm in Chicago. It discusses urban gardens as a collective environment to address health and wellbeing, cultural resilience and preventive health practices. It interrogates the linkage between these issues and interdisciplinary research methodology and pedagogy. The second paper (Rebecca Garden) links ethnographic field research to the literary study of narrative through a discussion of participatory research with deaf refugees on an urban farm and a literary analysis of published narratives written by and about refugees that address issues of food sovereignty and trauma. It explores the links between language, literacy, and literariness in a public health humanities project that focuses on narrative. The third paper (Sandy Sufian) describes an innovative framework, the “health humanities portrait” that she has devised for teaching the topic of immigration and identity in health humanities education. Sufian details the elements necessary to achieve a cohesive portrait and outlines both the pedagogical opportunities and potential challenges for weaving together narrative, literary study, and ethnographic approaches to health and healing.
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Panel I.C
On Being Creative in Clinical Spaces
Kat Jong, David Elkin, Monique Montenegro
Reflective writing, literature, and the visual arts have long been known to be valuable tools in both communicating and discovering meaning. Medicine is rich with examples of how narrative can be used to reduce stigma and contribute to career satisfaction among physicians, and yet even for those entering medicine with a passion for storytelling and creative expression, the environment of our clinical and educational spaces often does not value these pursuits. Clinicians in this environment find increasingly competing interests for time and attention. With today’s hectic work schedules and call responsibilities, how do we carve out time and define a role for narrative within our own practice? In this panel we will provide different perspectives from trainees to faculty for how to incorporate art and storytelling into clinical life. This panel will be structured as a hands on workshop and the audience will get to try out several creative exercises that can be implemented in the classroom or the clinic. We will explore how different formats such as short stories, personal reflection, found poetry, graphic novels, and painting can allow for both creative expression and the processing of experiences for ourselves and for our patients. We will show that one need not be an expert, or need hours of dedicated time in order to incorporate creative expression and narrative practices into everyday clinical work.
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Panel I.D
Contrived Environments: an Exploration of Kazuo Ishiguro’s Abandoned Ideas
Shruti Patil
The question of how humans live within built environments –from cloned physical bodies to constructed buildings and grounds –pervades Kazuo Ishiguro’s Never Let Me Go. Newly acquired early notes and drafts of the novel, held in the University of Texas’s Harry Ransom center, have not yet been significantly mined by scholars. But the archive reveals aspects of Never Let Me Go buried in the final novel. The abandonment of three early ideas in particular reveals the evolution of a theme that Ishiguro later identifies as the novel’s center, paraphrased as a kind of internal environmental determinism –a naturalization of our socially built environment that discourages any thought of our rebelling against or, so to speak, rebuilding it. First, Ishiguro entertains the idea of physical fences around Hailsham, which he later scraps to emphasize that often an ingrained belief in environmental barriers, rather than physical barriers themselves, constrain us. Second, the idea of a clone who passes as a non-clone to work as a “guardian” at Hailsham is abandoned in order to underline that Ishiguro’s characters view their clonehood, and all that it entails, as an unescapable part of their identity. Third, Ishiguro initially envisions but then gives up the idea of clones taking an active interest in the success of their organs after donation, which might have been a way of finding purpose, even a sort of afterlife, as a rebellion against the violently shortened lifespans that were a socially imposed condition of their creation.
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Seeing Medicine Through Different Eyes: A Qualitative Study of Nurses’ and Physicians’ Attitudes Towards Hierarchy
Lily Seo, Clare Drebitko, Nathaniel Brown
The complexity of modern medicine requires a collaborative environment. However, failure to show compassion and humanism to colleagues fosters a problematic culture in which interpersonal dynamics can range from inefficient to adversarial. The present study addressed both positive and negative aspects of the nurse-physician relationship and how it affects the practice of effective and humanistic medicine. The study survey was completed by 18 participants, 5 of whom also completed an interview. Some beliefs were common to both nurses and physicians. For example, all participants highly valued collaboration. However, several beliefs regarding workplace culture were notably divergent. One survey question revealed that, on average, physicians felt a hierarchical culture to be more beneficial than harmful to the delivery of healthcare, while all nurse respondents disagreed with that statement. It was also readily apparent that many nurses were dissatisfied with their treatment by physicians—so much so that several reported they were leaving their jobs. Most physicians were unaware of their nurse colleagues’ discontent, stating that nurse-physician relationships were positive, thus exposing a significant deficit in understanding between the two groups. The nurse-physician relationship is entrenched in centuries of cultural, political, and often gendered forces.Today, it remains a contentious topic for both provider groups. This study revealed that the frustrations felt by a number of nurses remain unacknowledged and unaddressed, creating a tenuous emotional environment that hinders the demanding practice of medicine.The lens of compassion may offer a productive way forward.
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Abortion access as an unrecognized healthcare disparity
Katie Watson
The political and cultural environment of health care prevent many practitioners and health care organizations from allowing women’s bodies to be the primary environment shaping their practice, and their failure to allow women’s stories, experiences, and requests to drive health care delivery reduces access to contraception and abortion. The delivery of abortion care in the US is a clear case of health care disparity, yet abortion access is rarely considered through the disparities lens Low-income women have more unintended pregnancies than high-income women: 60% of pregnancies experienced by women living below the federal poverty line are unintended, versus 30% of pregnancies experienced women with incomes over200% of the poverty line. Poor women also have a lower abortion rate: in 2011, women living under the poverty line delivered 60 unintended pregnancies per 1,000 women, versus 9 per 1,000 delivered by women with incomes over 200% of the poverty line. Nonetheless, a disproportionate number of abortion patients are poor: 49% fall below the poverty line, and 26% have incomes between 100-199% of that line. This paper will explain how the income and racial distribution of abortion patients present a classic case of health care disparities, consider how the latest political restrictions on access to contraception and abortion exacerbate this health care disparity, and describe how a reproductive justice approach can help us refocus healthcare delivery on patient experiences, context, and need.
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Rediscovering What the Ancients Knew About Getting Outside
Jacqueline Genovese
In The Nature Fix, Florence Williams reports on the current science behind the idea that nature can make us happier, healthier and more creative. But the therapeutic effects of the natural environment have been written about for centuries, including by Italian poet and humanist Francesco Petrarch, whose 16thcentury essay about climbing a mountain, The Ascent of Mount Ventoux, with its broadened view of both the outdoor environment and the interior environment of men’s minds, hearts and souls, helped launch the Renaissance. Also in the 16thcentury, Andreas Vesalius produced the groundbreaking De Humani Corporis Fabrica, containing anatomical drawings that placed the human body in natural surroundings. This presentation will reflect on the ancients’ writings about medicatrix naturae, and consider the effect of the modern technological environment on the human brain, and how the digital world may be altering the human response to nature.
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Emotional Boundaries: Self-Disclosure in the Undergraduate Health Humanities Classroom
Wendy Horwitz
Undergraduates may readily reveal emotion-laden, autobiographical stories in the classroom or through writing, and health humanities themes can be particularly evocative. While storytelling is a central project of health humanities and enhances communication, insight, reflection, and empathy, instructors may also need to navigate shifting emotional boundaries when managing disclosures such as mental health problems or distressing events. In undergraduate classes, it is fruitful to encourage the transformation of self-disclosures into creative work and to emphasize connections to course content, theory, and texts. Instructors can also provide models for professional approaches to self-disclosure and emotion, and moderate frank discussions about the challenges in defining emotional boundaries in education and professional life. Excerpts from students’ creative work provide examples of dilemmas and solutions in understanding and managing boundary problems in self-disclosure.
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The Performance and Pedagogy of Standardized Patienthood
Sarah Press
This flash presentation will summarize my cross-cultural investigation of Standardized Patient Programs at medical schools in Canada and the United States. Standardized Patient Programs enlist actors to perform patienthood, roleplaying the symptoms of various diseases and disorders, in order to help improve the communicative practices of future healthcare workers. By rhetorically deconstructing the scripts that posit patients’ profiles, I hope to reveal patterns in how future medical professionals are trained to read patients in specific, and often rhetorical ways. Moreover, I intend to find blind spots in patient representation, and to help create new storylines, which ensure that marginalized groups are accounted for. In this way, I will demonstrate how the pedagogical omission of certain racialized and gendered populations, as well as the learned biases towards stigmatized individuals, reproduce power relations in medicine that we can challenge through a more inclusive narrative approachbased on diverse medical perspectives “from below.”
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The waiting room as a space for self-expression in the pediatric primary care setting
Anoushka Sinha, Natalie Diacovo
Background: There has been growing interest in designing health care spaces that promote wellbeing and community engagement. The Charles B. Rangel Clinic is a community health center in Harlem that is an important locus of care for a historically underserved patient population. However, this population does not necessarily “see itself” reflected in their clinics. Hypothesis: The introduction of writing and art-making in response to the prompt “How do you see yourself?” to be displayed on the walls of the waiting room may engender a greater feeling of comfort and connectedness among patients, families, and their providers. Method: We will invite patients in the waiting room to participate in the activity followed by a brief survey about the experience and their interpretations. With permission, we will then display their pieces on the walls of the waiting room.
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Development of the Health Humanities Curriculum: Using Professional Healthcare Competencies to Inform Threads
Tricia Ryan
This paper was written to inform the development or revision of a health humanities curriculum within a higher education setting. As contemporary healthcare has become increasingly complex, technology laden and outcomes based, educators must seek new ways to develop the knowledge, skills and attitudes that will be required of students to secure gainful employment in a healthcare setting after graduation. After reviewing nursing, physician, and interprofessional competencies, common expectations rooted in humanism were noted. Humanities disciplines are perfectly situated to generate recognition of the human condition and experience for pre-healthcare students. This body of research and review of literature resulted in the three distinct humanities threads of communication, critical evaluation of information, and compassion. These threads can be used to further develop the necessary skills and habits of mind needed in preparation for healthcare practice. Administrators and educators within academic settings around the world will find these threads applicable to a wide variety of educational offerings.
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Panel I.E
“In vain all remedies [we] apply”: Anne Finch and the Treatment of Melancholy
Heather Meek
In her 1713 poem, “Ardelia to Melancholy,” Anne Finch’s autobiographical speaker finally surrenders to her affliction: “Alas! in vain, for all agree / To yeild me Captive up to thee” (ll. 34-35). Over the course of the poem, we learn that she has tried many remedies —“a thousand other arts beside” —to drive melancholy from her “darken’d breast” (ll. 8-9). In her “Spleen: A Pindarick Ode,” another autobiographical speaker suggests that “in vain all remedies [we] apply” (l. 129). She ends this poem with the description of a physician, who, in attempting to solve the mysteries of the affliction, succumbs to it, sinking “beneath [spleen’s] chain to a lamented grave” (l. 150). These poems, indeed, engage with the medical debates of the day around melancholy, sometimes explicitly: “The Spleen” was widely admired and published in the physician William Stukeley’s “Of the Spleen” (1723). This essay traces the treatments Finch posits for melancholy alongside those suggested in early eighteenth-century medical treatises (by Stukeley, Thomas Sydenham, Bernard Mandeville, and others). I explore the ways Finch both replicates and challenges commonplace medical wisdom, particularly as it relates to issues of gender, and I ask whether she truly endorses the notion that all remedies are futile. Finally, I consider at length a remedy that Finch herself posits and then unconvincingly rejects –the writing of poetry –and place this potential cure within both eighteenth-century and contemporary discussions of ‘narrative therapy.’
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Insomnia and Nightmare Aesthetics in Poe and Macnish
Eric Hengstebeck
Sleep became visible for the first time in the nineteenth century as an object of cultural and epistemic scrutiny in part because writers like Edgar Allan Poe established new noctuarial forms to explore nighttime environments as both critique and condition of modern subjectivity. While critics have focused on Poe’s interest in dreams, mesmerism, and hypnagogia, scant attention has been paid to his fascination with a wide range of other somnolent states, especially the historic emergence of insomnia. Indeed, Poe’s “Fall of the House of Usher” and “Man of the Crowd” theorize a new state of sleeplessness as a modification of what early sleep scientist and medico-gothic author Robert Macnish described as nightmare, establishing the generic preconditions for the rise of the modern literary insomniac. I show how Poe not only populates his poetry and fiction with somnolent bodies and sleep-deranged points of view but also formally experiments with the generic limits of nightmare to explore what Macnish identified as its limitless potential for generating incomparable “dread.” Reading Poe’s post-enlightenment environments and aesthetics of nocturnality alongside the history of early sleep science, this talk unpacks the constitutive relation between dormativity and normativity that was emerging out of changing conceptions of morality, disease, and political economy in the nineteenth century. Writing at the dawn of the modern classification of sleep disorders, Poe, I argue, joins the ranks of Charles Dickens, Walt Whitman, and others as an early literary geographer of the nineteenth-century night.
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Black and sleepless in a non-ideal world
Keisha Ray
In the United States, black people sleep a lot less than white people. Most scholars do not attribute this disparity to biology, but rather to greater social deficiencies experienced by black people. For instance, more black people than white people live in noise and crime filled neighborhoods, have less access to recreation areas such as parks and running trails, less access to healthcare, and less access to stable jobs and proper housing. These social factors along with cultural phenoms such as racism and racial prejudice can create sleeplessness for many black people. However, based on principles of medicalization, using medical interventions to remedy socially and culturally induced sleep disparities is an inappropriate use of medical resources. In this paper, however, I use the work of Charles W. Mills to argue that this kind of thinking reflects an ideal theorizing of sleeplessness, which is incapable of addressing racial disparities in sleeplessness. To address racial disparities in sleeplessness and its disproportionate effects on black people’s wellbeing, I turn to non-ideal theory. I use non-ideal theorizing to argue that if we look to the socio-political occurrences that are complicit in creating environments in which black people experience consistent socially-induced sleeplessness more than their white counterparts, using medical interventions to remedy sleeplessness is ethically justifiable.
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Panel II.A
In Context: Using the Humanities to Explore Moral Growth, Reaffirm Individuality and Build Resilience in Medical Trainees
David Elkin, Frolov Latoya
During this panel discussion, we will exploring the dehumanizing effect of medical training and environments, and the possible re-humanizing impact of literature, poetry and film to foster reflection, individuality, and growth in students. Multiple studies have demonstrated the dehumanizing effects of medical training, including emotional and moral disengagement, degradation of ethical reasoning, and the subjective experience of losing one’s individuality. Ultimately these limitations can contribute medical errors, and to burnout and depression. The health humanities are believed to promote deeper understanding and engagement with patients as well as beneficial effects for health care professionals. We will feature a discussion of several works, including a short story, an essay, a poem, and a brief film to explore the use of the medical humanities to promote reflection and growth, including encouraging trainees to reassess the unique values and characteristics that they bring to the health care field, to reassess their values and ideals, and examine how their unique attributes contribute to understanding patients. Reading and watching these works together will ideally generate a rich group discussion of these issues. We will enlarge this discussion to consider ethical decision-making, including a review of core principles and philosophical basis of ethical analysis, and the extent to which these principles are portrayed realistically or unrealistically in the media. We will also consider the possible limitations of the use of the health humanities in approaching these goals. Are there some trainees who will experience vicarious harm, including added confusion, as a result of considering the humanities? Can the humanities ever confer more harm than benefit? Could encouraging trainees to reflect on their ideals incur a sense of loss and disappointment? What are the power dynamics involved in moral distress, and can empowering trainees really counter ethical erosion in care settings? And if structural problems in health care are responsible for dehumanization, is it a worthwhile goal to ask individuals to shoulder the burden of addressing these changes without simultaneously improving the environment in which they train? How should we, as educators, best utilize the humanities to advance the moral and individual development of our trainees? At the conclusion of this discussion, we hope to generate a rich discussion of these issues, and empower participants to better utilize the health humanities to further their work with trainees, as well as their own practices. Pieces to read or watched together during this session: “Wild Plums” by Grace Stone Coates; Poem: Guadeamus Igitur by John Stone; Short Film: “14th Arrondissement” from Paris Je T’aime; Book Excerpt: Intern: A Doctor’s Initiationby Sandeep Jauhar. 2007
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Panel II.C
Attending and Attention In Medicine: Mapping Metacognitive Lenses To Neurocognitive Pathways For Patient Storytelling
Quentin Eichbaum, Leonard E. White, Raymond Barfield,
The clinical and therapeutic value of “attending” to the patient as a unique individual and paying “attention” to their storytelling are often undervalued in today’s rushed and complex health delivery systems. Moreover, medical curricula tend to over-emphasize the supposed factual certainties of basic medical sciences over the uncertainties and ambiguities of the medical humanities that focus (among others salient issues) on narrative medicine and patient storytelling. Studies have demonstrated that clinically pertinent information may be embedded in the patient’s story, and that eliciting and paying attention to the patient’s story has both clinical and therapeutic value. However, the nature of the “attending” and “attention” that occurs during storytelling between patient and clinician has been insufficiently explored. For the clinician, such attending/attention is linked with metacognitive attributes such mindful awareness, imaginative flexibility, emotional agility, and the capacity for cognitive and affective monitoring and regulation. In this session, we will (1) demonstrate how medical improvisation mobilizes such metacognitive attributes in real-time, generative storytelling; (2) examine these simulations through various metacognitive lenses to demonstrate the kinds of attending/attention at work in the narrative spaces between clinician-provider; and (3) discuss the neurocognitive pathways implicated in attending and attention through a hand’s-on demonstration of relevant brain regions using (preserved) human brain specimens.
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Panel II.D
The Labors of Love: Glory as Informal Caregiver in Marilynne Robinson’s Home
Lorna Hummel
Marilynne Robinson’s 2008 novel, Home, takes as its subject the private space of the home. The narrative details the homecoming of daughter, Glory, and son, Jack, to their father Robert Boughton, whose health is rapidly declining. While the novel seems most occupied with Boughton’s physical illness and impending death, it also extends narrative space to the respective suffering of Glory and Jack. The sister and brother are not affected physically as their father, but mentally, Glory with depression, and behaviorally, Jack with autism spectrum disorder. Most of the current scholarship on Homedoes not recognize Glory as the central figure of the narrative, let alone a mouthpiece for voicing the ethical implications of caretaking, because she often recedes into the background of her own narrative. I argue that through Glory’s role as informal caregiver, Homeexposes the taxing environment of full-time caregiving and ratifies the physical, mental, and emotional burdens that caregivers shoulder. Throughout this study, I will explore and analyze Glory’s role as caregiver: its beginning, the relationships it overwrites, its limitations, and its implications for Robinson’s audience. Reading Glory through an embodied sociological lens speaks to the experience of female informal caregivers, how their caregiving is both vocation and oppression, and how more heed should be paid to these vital servants of ailing persons. Spatial analysis of the home also aids my conclusions, as labor meets with love in this domestic space and thus threatens the sense of home, mobility, and well-being.
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Where did they put you? Transition and adaptation to long-term care in Alice Munro’s short stories
Lucia Gagliese
Alice Munro has written several short stories about the transition from independent living into long-term care. Research has shown that older adults making this transition experience destabilizing losses of identity, relationships, and the structures associated with their home environment while simultaneously confronting the challenges of retaining and rebuilding identity and agency as new roles, relationships, and routines are established within the long-term care setting. This adaptation, and re-stabilization, occurs within the context of the increasing morbidity, dependence, and/or cognitive impairment which necessitated long-term care. In this presentation, I will examine Alice Munro’s depictions of the transition in terms of its impacts on identity, relationships, and quality of life. The characters’ engagement/disengagement with the old and new environment including continuities and discontinuities in physical and mental health, relationships, and activities of daily living will be explored. Resilience and the establishment and nurturing of new aspects of self within the boundaries of the long-term care setting, including adoption of, or rebellion against, the institutional culture will be considered. The stories to be discussed include The Bear Came Over the Mountain, Mrs. Cross and Mrs. Kidd, In Sight of the Lake and others as appropriate. The texts will be positioned within an adapted lifespan-developmental framework incorporating Meleis’ middle-range theory of transition to show that Alice Munro depicts adaptation to this developmental challenge as a process of balancing losses and gains across life domains.
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Misfits and Medicine: Crossing Borders with Shusaku Endo
Brian Volck
Acclaimed Japanese novelist, Shusaku Endo, considered himself a lifelong cultural misfit. Estranged as a child from his father in a deeply patriarchal society, he converted to Catholicism at age twelve, resisted the militaristic education of wartime Imperial Japan, endured ridicule while studying in France after World War II, and suffered months of isolation recovering from crude surgical attempts to treat pulmonary tuberculosis. Best known in North America for his historical novel, Silence, set during the brutal seventeenth century Japanese persecution of Christian converts, Endo wrote as an outcast about moral choice, faith vs. doubt, personal responsibility, and social norms. I illustrate how Endo’s biography informs several works, available in English translation, concerning modern medicine, illness, and health, often from the perspective of a morally conflicted physician or suffering patient. In an early novel, an esteemed doctor wrestles with his wartime complicity in the vivisection of an American POW. In another, the son of an outwardly simple businessman ruthlessly pursues the advancement of his career as a surgeon. In his final novel, Deep River, Japanese tourists travelling to India are introduced as individual case studies in moral or spiritual suffering. Through fraught encounters between very different Asian cultures, the characters discover crucial differences between healing and curing. Endo transgresses borders between East and West, physical and spiritual, private and public –even life and death. In conclusion, I propose Endo’s work as a unique voice to consider in culturally-informed health humanities curricula.
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Panel II.E
Borders, Bodies and Black Goo: Ebola Analogues in It Comes at Night
Gillian Andrews
It Comes at Night (2017), directed by Trey Shults, follows two families during a mysterious plague and dramatizes the question: How do we balance the instinct to protect ourselves and our resources with the humanitarian need to help others? This interpersonal ethical focus led to the film being dubbed “2017’s first immigration horror film” (Busch). This paper will argue, however, that reading It Comes at Night as an allegory for immigration is complicated by its depiction of the contagious disease which threatens Shults’ characters. I suggest that by visually equating disease and the other, Shults’ editing reinforces the stigmatization of immigrants not only by suggesting that immigrants literally transmit disease, but by signifying that immigrants metaphorically are a disease that can harm a community. Drawing on Kristeva’s theory of the abject, this paper demonstrates that by consistently following scenes of physical boundary transgression with shots of characters expelling black bile, Shults conflates different forms of abject boundary transgression (social and bodily) as equally horrific. Importantly, Shults’ disease visually resembles the sensationalised public conception of Ebola, popularized in Preston’s The Hot Zone. This paper will thus argue that Shults’ film evokes, and ultimately reinforces, prejudices seen during the 2014 Ebola outbreak which contributed to real-world fear and mistreatment of migrants. Critically considering cultural products which are praised for tackling immigration issues like It Comes at Night, and challenging the normalization of these stigmas, is vital in our current moment of intense anxieties and political debate surrounding immigration.
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Is the Bacterial Resistome a Hyperobject?
Lorenzo Servitje
This paper considers how we might think differently about antibiotic resistance. It has been projected that by2050, over 10 million people per year will die of antibiotic-resistant infections, eclipsing cancer as a leading cause of death. Most of us are familiar with the looming threat of the so-called “post-antibiotic apocalypse,” circulated by news media in science fictional rhetoric or by changes in standards of care that have inculcated more judicious prescriptions by practitioners. Despite this attention, antibiotic resistance continues to be misunderstood both in gravity and scale. Part of the problem is the insular and anthropocentric way of thinking about the relationship between humans and microbes.This paper proposes conceptualizing the bacterial resistome—the mass expanse of antibiotic resistance genomes of both pathogenic and non-pathogenic bacteria—as a hyperobject, drawing from the ecocritical theory of Timothy Morton. Hyperobjects are entities which are so massively distributed in space and time that they cannot grasped in their expansiveness or experienced directly; moreover, hyperobjects imposes upon humankind its own precarity relative to the broader ecologies upon which it has defined itself against. Theorizing the bacterial resistome as a hyperobject affords a unique perspective of antibiotic resistance in three ways: first, it acknowledges the resistome as a material fabric that connects diverse ecologies and human/non-human assemblages; second, it decenters the tendency toward narrowing the scope of antibiotic resistance to the clinic and individual patient; and third, it considers the bioethical challenges that stem from thinking of antibiotic resistance at a global scale.
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Envisaging a Postgenomic Era: Biocapital and the (Re)Inscription of Female Bodies in a Medicalized Society in MaddAddam Trilogy
Hsin-Ju Kuo
Focusing on Margaret Atwood’s MaddAddam trilogy –Oryx and Crake (2003), The Year of the Flood (2006) and MaddAddam (2013), this paper proposes to explore and map the axis of female body discourse situated in a contemporary locus where biocapitalism, genetic enhancement and biomedicalization converge. Although the publication of individual works span for ten years, three novels actually incorporate and present an integral narrative viewpoint, cogitation and configuration with indivisibility. Thus, by breaking the boundaries of individual texts and adopting an issue-orientation method, this research intends to investigate the core issues of the objectification of female body consciousness, and the refashioning of women agency emerging from a medicalized society as well as a biocapitalist milieu. Serving as a historical prism of contemporary women studies, Atwood’s trilogy reflects the dialectical process of biopolitical ethics and re-forging of women subjectivity. The research project will firstly examine how “normativism” acts in the era of genetic engineering and biomedicalization by sorting out the categories of normalcy and deviance, body commodification, and social segregations. Furthermore, by multi-layered, inter-textual reading of the texts, the research unpacks the contextual development of “biocapitalism” and “corporate regimes of governance” that activate body surveillance and control. This surveillance economy co-opted into individuals further wades into the re-imagination and re-presentation of female body normalization and enhancement, which leads to anxious metaphors of biopolitics and ethics. Ultimately, the above explorations align to the core facet of the research: the re-fashioning and formation of women agency by diversified techniques of the self. In the novels, an array of women’s identities connect to polyphonic existence of female survival, resisting the fact that female bodies are objectified so as to be bio capitals in a medicalized society. The poetics of resistance generates a re-examination of ethics and biopolitical issues in this highly biomedical age.
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Posters
Graphic Bioethics
Craig Klugman
Graphic Bioethics is an offshoot of Graphic Medicine, which has taken off as a powerful and popular aspect of the health humanities. With a combination of visual imagery and words, comics have become popular as a means to help others understand the patient and the provider experience. At the same time, the act of creating these graphics has benefit for the artist and many of these pieces have been constructed by patients and their caregivers to share their experiences . Despite its popularity in the health humanities, graphic arts have not made as strong an impact in bioethics. In 2017, an online bioethics blog began adding comic art to all of its posts as a way to draw attention to the text and also the content of the text in a visual message. Bioethics comics do not replace longer text, but enhance the reader’s experience of engaging with the ideas and provides a synopsis of the most important points. This presentation displays a selection of the comics by one artist that have been used to explain bioethics ideas (of blog posts) in the easily accessible and digestible of single-frame comics. The aim is to introduce the audience to the possibilities of describing bioethics through comics which renders complex applied moral issues in graphic form.
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Aesthetics and Anesthetics: Boundaries and Crossings in Poetry and Anesthesia
Audrey Shaffer
Poetry and altered states are complex: they are simultaneously specific and ambiguous, linear and defiant of boundaries. The dynamics of poetry are applicable to the practice of anesthesiology, where both intimacy and detachment are experienced, at times, in intense and fraught ways. Similarly, poetry classes and anesthesiology training are both replete with new and uncomfortable experiences, language, jargon, and rituals. A visual analysis of the poem as object –with its white hospital sheet-like border, the flush or ragged margins, the placement of title and poet’s name, can be likened to a visual analysis of the anesthetized patient. Whilst reification of the patient, particularly the incapacitated patient, is dehumanizing, to deny that patients are objectified during medical care is to forego critical analysis of the experience of illness. Exploring the properties of poetry and anesthesia, such as allusion, boundedness, porosity, disruption, voice, breath and surprise, can illuminate both poetics and anesthetics.
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Letting Residents Tell Their Stories: Narrative Medicine as a Means to Reduce Burnout among Internal Medicine Residents
Anna Maria Gramelspacher, John Steven Cummins, Jon Meyer, Laura Hirshfield
Our poster, “Letting Residents Tell Their Stories: Narrative Medicine as a Means to Reduce Burnout among Internal Medicine Residents,” will describe a curricular program we have developed within the University of Illinois at Chicago’s Internal Medicine Residency Program. Our poster will include a background of what we believe to be key contributors to resident burnout and will explain how Narrative Medicine offers a unique antidote to emotional exhaustion and depersonalization, key measures of physician burnout. Our program offers residents an opportunity to explore not only their patients’ experience of illness, but also of their own experience of caring for their patients. Our poster will describe the execution of our program, as well as our objective measures of influence, which include Maslach Burnout Inventory scores for all residents pre-and post-intervention, as well as anonymous surveys completed by participating residents.
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Improving Interventions Designed for Pediatric Patients Diagnosed with ADHD and Anxiety
Amira Nafiseh
One approach to lowering the amount of clinical trials that fail due to recruitment issues is to engage stakeholders in the earliest stage of the study using qualitative methods. Qualitative approaches allow researchers to learn what is important to representative stakeholders so interventions can be designed to meet their needs. Two related projects that utilize qualitative methods to inform the larger research agenda and thus help to incorporate patient voice into the process were designed and are in the process of being executed in the Children Health Services Research Department at the IU School of Medicine. TEACH, Tailoring Education for ADHD and Children’s Health, and CHICA, Children Health through Computer Automation, currently exist to aid families of children with ADHD and anxiety but are being redesigned to include patient feedback prior to expanding to other clinic locations.
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Drawing Brains: Infusing Neuroscience Education With Health Humanities
Leonard White
Medical students increasingly learn the foundational neurosciences at an accelerated pace that emphasizes knowledge acquisition over reflection and introspection. However, the “fast learning” demanded by an accelerated survey of neurophysiology, clinical neuroanatomy, and the biological foundations of human behavior could be enhanced by infusion of “slow learning” inherent in the humanities. To do so, we created “Drawing Brains” as optional evening sessions for first-year medical students to encourage engagement with human brain specimens as objects worthy of ‘close reading’ and re-presentation in artistic form. These experiences enable learners to engage the depth and meaning of human experience by closely reading so-called typical human brains and those that have been transformed by injury and disease. Such creative encounters with the “awe-fullness” inherent in biomedical education is contributing to a deepening appreciation of the necessity of metacognitive proficiencies for the humanistic practice of medicine.
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Panel III.A
Refiguring the Cultural Contours of Embodiment: Recent Work in Disability Arts
Ann M. Fox, Carrie Sandahl, Sandie Yi, MK Czerwiec, Aly Patsavas
The environments of health humanities, as the call for papers suggests, are capacious: they are “social, cultural, physical, and emotional.” Disability studies scholars and those creating disability arts are likewise concerned with considering these environments; importantly, however, they also remind us that the experience of embodiment cannot be separated from that of environment. This panel will offer to conference participants an exploration of how contemporary disability arts works to both explore the experiences of disabled bodies as well as work to refigure the multiple environments in which they exist. There is particularly vibrant disability arts and culture based in the conference location, Chicago, reflected in the makeup of this panel (four out of five participants are Chicago-based). This session will highlight disability presence and aesthetics across memoir, graphic medicine, fashion, and photography. How, our presenters will ask, do the works these artists foreground refigure our understanding of the disabled body? How do they do so in ways that refigure the very media through which they work? Carrie Sandahl will present an excerpt of her memoir-in-progress Too Much Information, which explores issues of transracial adoption, disabled parenting of disabled children, and the fault lines between mental health and physical disability issues. Sandahl asks of us where is the boundary between personal information that reveals larger social issues and that which is cringe-worthy “tmi.” Disability studies scholar Ann Fox will be speak about about portraitist Riva Lehrer and Carrie Sandahl’s collaborative installation Portrait of Carrie Sandahl: A Project in Four Parts, in which Lehrer and Sandahl re-recreated the collaborative environment in which Lehrer’s 2017 portrait of Sandahl was painted. In so doing, their re-staging of a crip environment reveals the generative nature of disability community. Disabled artist Sandie Yi, in her paper “Crip Couture: Re-imagining Fashion Practice through Crip Intimacy,” will discuss her recent work, which complicates the representation of disability in fashion through Crip Couture, wearable art objects made about disabled bodyminds. Yi argues that the nuance of the care and intimacy produced within disability community has the potential to generate artistic visions for fashion practice. Conference keynote MK Czerwiec will discuss how the nascent Graphic Medicine movement has proven to be an exciting area of creation that overlaps in profound ways with disability arts. Czerwiec’s graphic memoir Taking Turns is an excellent example. In telling the story of her experiences as a caregiver during the AIDS crisis, she focuses on what it is like, emotionally and physically, for her patients to experience living with AIDS. As much as was possible, she positions her patients as teachers regarding their experiences. She also foregrounds the process of art-making as a response to disability. Her current collaborative works, in steering the focus of Graphic Medicine as an organization and editing an anthology of comics about menopause, have taken the same approach. Disability studies scholar Alyson Patsavas will discuss her current project creating and cultivating a “Crip Archive of Pain.” She describes a collection of photographs she took that seek to capture the places, spaces, and contexts in which pain “crises” happen. Patsavas reads these images through and against standard diagnostic questions such as “where does it hurt,” “how would you rate your pain,” and “how does your pain impact your daily life” as a means of interrogating dominant epistemologies of pain. In doing so, she argues for the centrality of disability arts and culture to the urgent project of rethinking pain (as more than an individualized experience located strictly within the body and mind).
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Panel III.B
The Environments and Contexts of “Medical” Versus “Health” Humanities
Julia Knopes, Melissa Pompili, M. Ariel Cascio,
In the past decade, there has been a shift in the language of our field from “medical humanities” to “health humanities.” While the latter term seeks to be more inclusive, both terms may be informative and illustrative in different ways. The panelists in this session will ask: in what environments (social, cultural, material, and spatial) should we opt for “medical” or “health” to define our scholarship? What audiences are we inviting when we employ each term, and in what environments do the terms “medical” or “health” hold the greater meaning for academics, clinicians, or other practitioners who might utilize our research? Drawing on a wide range of fields—including anthropology, geography, bioethics, and English—the panelists will explore how these phrases apply within and beyond their areas of research in the medical/health humanities and social sciences. They will explore what terms best define their work, and in what spaces and contexts. The panelists will reflect on both patient-sided research (centering on feminist and disability studies approaches) and clinician-focused research (on the experiences of physicians as medical trainees and health practitioners.) The panel seeks to further nuance how we characterize and thereby communicate about interdisciplinary work from multiple topical and methodological perspectives. It will therefore be informative for scholars and trainees navigating both our field and the diverse and multidisciplinary career trajectories we pursue.
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Panel III.C
The Role of Doodling for Healthcare Researchers in Enhancing Self-Awareness and Attention While Reducing Anxiety and Depression
Carol Nash
One of the first lessons in educational settings is don’t doodle! Those unwilling to heed this warning are considered by instructors to be unable to concentrate on their work. The implication is doodling will ultimately result in failure at all academic pursuits. This prejudice is repeated so frequently by educators that learners normally stop doodling early in their academic careers. Many, as a result, then feel reluctant to draw under any circumstances. But is doodling antithetical to scholarship? This presumption was unexpectedly called into question through a Health Narratives Research Group sponsored by the Department of Psychiatry of the Toronto Mount Sinai Hospital. Members of the group seek to reenergize their research careers by taking the story that initiated their interest in health research and, with the help of group members, develop it into a narrative with a particular point of view. Participants have called the group, in operation since 2012, “life changing.” Discussion has regularly centered around stream of conscious writing in response to 5-minute prompts provided by the facilitator. However, it was noticed that during discussion some participants spontaneously began doodling and those who did doodle reported being more relaxed and constructively introspective regarding their personal insights and with respect to the help they offered to others. Consequently, during the 2017/18 academic year, the group was modified to encourage doodling. The results of this year of encouragement will be presented (including examples of the doodles produced by participants) in comparison with past years’ results as a control.
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Improvisation in Navigating Self-Care and Health Care Environments
Matt Elwell, Nicole Buras
When people think of improvisation, typically, performance arts come to mind. However, for those who perform improv, this art form often means much more; in fact, there is a growing body of knowledge around the uses of improvisation in other arenas, such as community outreach, healthcare, and workplace learning (Boal, 1993, 2003; Kulhan & Crisafulli, 2017; Tromski & Doston; Vera & Crossan, 2004). The purpose of this project was to examine how improvisers identify the impact improvisation had on their own lives and how many, in turn, affected the lives of others.
The conceptual framework drew from literature on applied improvisation which represents the application of improv in settings outside of the preforming arts. This project examined28 narratives centering on personal experiences surrounding improvisation. An analysis identified 12 related specifically to improv’s role in their navigation of life’s emotional times. An additional 4 stories addressed improv’s role in the author’s ability to provide care to others in a healthcare or health-related setting.
The project’s results speak to the conference’s interest in how individuals navigate their emotional environments. The improvisers shared accounts of difficult situations where improv’s lessons, training tools, and community provided benefits to their coping and self-care. Furthermore, Healthcare Professionals exposed to improve noted its value to them as practitioners in helping others with their own emotions. This session employs these accounts to facilitate a lively and critical discussion around the applications of improvisation in self-care and health care.
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Panel III.D
Problematic Language: How the term “burnout” limits attempts to assist struggling physicians
Stephanie L. Shively
Language shapes the way that we look at an issue and the words we choose to define a problem dictate how we address it. This paper is part of a larger dissertation, which focuses on the effects of trauma on physicians and analyzes how the professional identity of physicians fails to provide adequate solutions for coping with the damaging effects of trauma. This paper focuses on an important part of that larger conversation: the popular concern over “physician burnout” and the implications of choosing to use that term to the exclusion of others. Over the last five years physician wellbeing has received a great deal of public attention. In 2016 the American Foundation for Suicide Prevention reported that approximately 300-400 physicians commit suicide every year. However, while suicide is frequently associated with mental health conditions such as depression, anxiety, and PTSD, most of the recent literature dealing with the issue has focused almost exclusively on “physician burnout”. This paper suggests that defining the issue exclusively as “burnout” narrows the range of contributing factors which can be considered. Concerns about trauma are overlooked in favor of discussions about work hour restrictions, paperwork, and bureaucratic red tape. While these are important topics worth considering, choosing to use language to define the problem which directs the conversation away from other important topics, like trauma, is problematic. Moreover, the focus on “burnout” places the responsibility upon individual suffering physicians and fails to hold institutions of power within the medical community accountable for their role in the situation.
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Transforming LaCombe’s “Playing God” into the Confessional Narrative it Should Be
Julie Aultman
Intended to be read as a piece of literature, Michael LaCombe’s, “Playing God,” has achieved lasting influence as a bioethics case and prompted questions surrounding narrative confessions by healthcare professionals. While part of our aim is to illustrate this story’s pedagogical merit for complicating conventional bioethics cases, a deeper analysis explores how this fictional narrative functions as a narrative confession. If “Playing God” were a more carefully crafted testimony, revealing of the narrator as moral sufferer and his admission of wrong-doing, this would arguably diminish the story’s didacticism, while elevating it’s literary value. The narrative testimony or confession is an act of humility, and as such, empowers the reader to discover her own secret spaces, and to permit others to inhabit her lived experience as she has inhabited the confessor’s own moral suffering. Thus, as a narrative confession, “Playing God” would not merely be an exercise in finding moral resolution or narrator absolution, but a journey of ethical examination, self-reflection, and solidarity among fellow confessors. The following paper cautions the use of “Playing God” as a bioethics case without examining its literary shape, mode, and purpose, as well as, how the “ethics of the telling” should align with the “ethics of the told” (Phelan, 2007). We demonstrate how “Playing God” could be effectively transformed into a successful confessional narrative that prompts deeper ethical reflection than its current form as a fictional account presenting an ethical quandary to be grappled with.
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A discourse analysis of parallel chart narratives: emotional attitudes and role expectations adopted by medical trainees
Roxana Delbene
This paper argues that parallel charts (seeCharon2006), a narrative pedagogical approach typically used in narrative medicine, provide the health humanities with valuable insight into the emotional landscape of medical trainees, e.g., medical students and residents. Drawing on studies on the pragmatics of emotion (seee.g.,Caffi2007), discourse analysis (Fairclough2003) of parallel chart narratives is conducted with the purpose to identify writers’ use of emotional markers, such as nominalization, active and passive voice, and other discursive features. These markers are likely to indicate the narrator’s attitudinal positioning (e.g., closeness or distance) and degree of emotional involvement (e.g., affiliation and disaffiliation) toward their attitudinal objects, that is, patients, procedures, topics, others. The analysis of the linguistic and emotional positioning of medical trainees in parallel charts shades light into their role identities; i.e., how they see themselves vis-à-vis professional expectations. Published parallel chart narratives, collected by a narrative medicine practitioner in a teaching hospital in New Jersey, are analyzed. The study compares emotional markers between residents’ and medical students’ narratives. The study suggests that the narratives of medical students present more conflicting markers of emotional involvement than the narratives of the residents. On the other hand, parallel chart sessions (the space where parallel charts are meant to be listened to) are also spaces for educators to shape trainees’ professional identities. It is concluded that with the use of parallel chart practices, narrative medicine practitioners are contributing to assert and legitimize the role of subjectivity and emotionality in healthcare.
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Panel III.E
Chrysalis: Storytelling for Life Transitions
Laura Biagi
My work as a scholar, educator, artist and healer, is a blend of storytelling, performance art, and sound healing. I design and teach courses on “healing narratives” at DePaul University and Cook County Jail in Chicago, and I also collect and weave my own stories in live hybrid presentations and performances (TEDx, Reimagine Failure: Breathe, Belong, Believe, https://www.youtube.com/watch?v=5V5wKMcoQYs; and High Priestess at Chicago Ideas Week 2017, https://www.youtube.com/watch?v=s3CUH-NT8r8). For this conference, I am interested in presenting Chrysalis: Storytelling for Life Transitions, an original paper/performance that follows my journey of working with people in transition from one gender to another, from imprisonment to re-entry, from living to dying. Everyday, physical, emotional, mental bodies are moved, changed, policed, punished, freed, reshaped or altered. In this presentation, the body as environment is understood in its constant becoming, despite the apparent fixity of labels (individual, immigrant, transsexual, sick, dying, unemployed, imprisoned, freed, etc.). Drawing from the concept of katharsis in ancient Greek tragedy, this presentation honors healing as a performative process in which emotions are allowed free expression and then codified in symbolic vocal and physical movements. Learning how to express and manage emotions through storytelling is an invaluable skill for health professionals, practitioners, educators and leaders, and this presentation aims at providing inspiration as well as practical tools. Part lecture (10min) and part performance (10min).
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A Psychotherapy Narrative
Hilary Offman
As healthcare providers, we all agree that the acquisition of medical knowledge is necessary for the alleviation of suffering due to illness. However, if we broaden our perspective beyond a paradigm of treating illness to one of improving health and wellbeing, we discover that medical knowledge alone is not sufficient. Not only do social determinants have a tremendous impact on the quality of life of patients, they also have an equally powerful influence on providers. Clinical narratives represent an opportunity to convey the complex interplay between social determinants as they impact both patient and provider. And because intersubjectivity can be particularly challenging when determinants intersect, we need stories that address that complexity—ones that include an authentic depiction of the struggle to do meaningful clinical work. This story is a psychotherapy narrative that reveals what can happen when both psychotherapist and patient are “fat” and “female”. When my patient Emily abandoned her chaotic lifestyle to become “fat and fabulous” like me, I was initially optimistic. But with her subsequent, dramatic weight loss, she embraced heightened levels of sexual promiscuity and alcohol abuse, even making an impulsive decision to participate in her mother’s suicide. After she was arrested for impaired driving on the anniversary of her mother’s death, I could no longer deny that unconscious processes were at play. To re-establish reflective awareness, I chose to acknowledge how disavowal of my shameful feelings contributed to what transpired between us. In the end, the co-construction of meaning was mutually transformative.
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Narrative-based education for worsening prognosis and end-of-life conversations: clinical implications for learning and practice
Deborah Love
Withdrawn
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Panel IV.A
Intersections in Bioethics and Environmental Ethics
Nese Devenot, Eileen Anderson-Fye, Kerri L. Slatus, Rachel Bracken
Scholars have recently drawn attention to the pressing need to build bridges between the fields of bioethics and environmental humanities. In August 2017, issue 17:9 of The American Journal of Bioethics explored this theme in relation to Lee’s target article, “A Bridge Back to the Future: Public Health Ethics, Bioethics, and Environmental Ethics,” which highlights the shared historical roots of biomedical ethics and environmental ethics. In his editorial response to Lee’s article, Macer insists that any holistic bioethics requires embracing a systems approach that recognizes how notions of isolation and individuality are ultimately social constructs. The issue’s themes of the interdependence between health and environment and “the interconnectedness of all beings” ultimately orients bioethics towards longstanding thematics within ecofeminism and deep ecology, representing an opportunity to integrate these fields under the banner of social justice. This panel interfaces with and builds upon this work through the lenses of multiple disciplinary examples in the health humanities. Environmental ethics and ecology interface with anthropology, conservation science, comparative literature, English, film studies, public health and feminist studies in this panel. The course, “Conservation, Compassion and Awe in Yellowstone National Park: Environmental Ethics and Human Health” (Anderson-Fye and Petty) innovates in scholarship and collaborative education focusing on the living history of American Bison as a case study of power, culture, environment, genocide and human health, it engages psychological and medical anthropology as an orienting theoretical complex to critical and enduring questions. Connecting these thematics to recent developments in psychedelic medicine, Devenot explores the potential for affective experiences of awe and interconnection to influence both public and environmental health. Bracken continues and complicates these themes in an examination of the “Handmaid’s Tale” by adopting a practice she refers to as “reading for public health,” where she foregrounds the intersection of environmental concerns, toxicity, biopolitics, and public health at the center of The Handmaid’s Tale. Looking to the ways in which forced surrogacy is both justified and contested in the novel and television series, this paper scrutinizes the biopolitical abstraction whereby women’s bodies, and the reproductive potential they contain, are reduced to “national resource[s]” and exploited in the name of public health. Thus, The Handmaid’s Tale makes a compelling case for a narrative approach to public health—one that avoids the risk of dehumanizing the individual members of a collective body politic in public health policy and instead amplifies the voices of those experiencing environmental health crises. Finally, Slatus engages Chang-Rae Lee’s novel On Such a Full Sea, which reflects a dystopian future narrative of people with segregated healthcare as the planet has been increasingly degraded by the effects of global warming and pollution. In the novel, all people are affected by the “C illness”, and healthcare is determined by economics. The novel necessitates bioethics in its examination of (in-)equity, climate change, and individual health. Together, these papers engage a wide range of ideas relevant to health humanities that require us to take seriously multi-media and multi-level analyses of individuals in their environmental contexts.
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Panel IV.B
Teaching in the Borderlands of Healthcare Education: Can the Humanities be Relevant without Reductionism?
Nate Johnson, Erica Fletcher, Nicole Piemonte
Ten years ago, Stanley Fish asked in The New York Times “of what use are the humanities?”—ultimately answering “none whatsoever,” since they don’t “bring about effects in the world.” While it’s important to not defend the humanities merely in terms of their utility or measurable “effects,” the dichotomous perspective that sees the humanities as being either “good for something” or “as their own good” fails to consider the complexity of the situation. And perhaps nowhere is this more complicated than in “applied” fields like the health humanities where stories, poems, art, images, or writing are used in particular contexts, with particular people, and usually for a particular purpose. Thus, this panel explores the tensions many of us feel when we attempt to make the humanities “applicable” to the health professions. Are we able to acknowledge the “effects” of the humanities without feeling compelled to justify their existence? Is this even possible in a medical culture dominated by “evidenced-based” practices? When is a discussion of critical theory or a careful analysis of a text illuminating, and when are they alienating? Do we lose something when we make the humanities “relevant” to healthcare practice? The first panelist notes that while the focus on the “beneficial side effects” of the humanities is reductive, the relatively late placement of humanities in the course of healthcare education serves a further reductionism. Drawing on a meta-ethical distinction between an ethics of utility and one of authenticity, the panelist argues that the relevance of humanities lies not in a divide between applied vs. inherent good, but in the divide between inauthentic vs. authentic living. Whether authentic living is “good” may be debatable. What is not debatable is that healthcare professionals confront dire authenticities of life in daily practice, and the failure to address these confrontations throughout their medical and pre-medical education is lamentable. The second panelist argues that while it is critically important to resist the temptation to reduce the humanities to a means to an end, such resistance is hollow in the face of real personal suffering—of patients, practitioners, and students who might be in desperate need of humanities (instrumentalized or not) to express such suffering. Drawing on her work at a large metropolitan hospital, the panelist contends that theoretical arguments about reductionism and instrumentalization—as important as they may be—are of little value in the clinical setting. The final panelist explores the work of peer support specialists, people with lived experience of psychiatric histories who are trained to share their stories as a way to support others in mental health crises. The panelist discusses how peers can speak back to medical culture as they center their work within practices of vulnerability—and also describes the challenges peers face as they become integrated into public mental healthcare systems and grapple with the commodification of their stories of suffering. She points to strategies from mental health social movements to address issues of co-optation and assimilation, as peer labor becomes increasingly popular—yet remains undervalued—within mental healthcare services.
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Panel IV.C
Operationalizing Donna Haraway’s Cyborg through My Cancer Narrative
Jay Baglia
Donna Haraway’s (1991) concept of the “cyborg” describes a fusion of machines and organisms. The etymological root for fusion is the Latin fusionem, an “outpouring.” The verb, fundere, is “to pour or melt,” “the state of being united or blended.” Fusion has surfaced again and again in my cancer odyssey. I’ve received blood transfusions and my chemo is infused (sometimes in the infusion room). During chemo weeks, an implanted titanium port beneath my clavicle receives the highly toxic treatment (R-EPOCH), which I carry around in an over-the-shoulder bag, a pump administering small doses every ten seconds. The portability of my treatment means I can move freely from clinical and social to educational and digital spaces. Haraway raises important questions when she suggests we become cyborgs when the fusion is hidden. What Haraway argues is that the boundaries between the physical and the non-physical are not precise. As a result, the cyborg bridges gaps in our binary thinking. Furthermore, cyborgs live in the borderlands, or what Victor Turner (1975) refers to as liminal space. Here Haraway draws attention to our fractured identities; we are not ever one thing. It is this environment, this liminal space, these borderlands, where transformations occur. Environmental borders include statesof being (healthy vs. sick), geographies (within or without), isolation versus sociability. This proposed manuscript employs the cyborg in an interrogation of body-as-environment, and, through my experience of surviving cancer, as the blend of body (as natural) and treatment (as technological).
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The Influence of Time on Meaning: Cancer Family Caregiver Stories
Anna-leila Williams
Time is a powerful actor in clinical care for health professionals, patients, and family members. For health professionals, the objective measure of time is a formidable opponent in a continuous game of Beat the Clock. For patients and family members, the metric of time is important, however, the subjective experience of time poses the greater challenge. At one extreme, time passes slowly as patients and family members wait for appointments, results of diagnostic studies, and the amelioration of pain. At another extreme, patients and family members experience the acceleration of time conferred by a life-altering diagnosis. Philosophy and cognitive science support the premise that for time to be perceived, one needs consciousness and corporeality. As humans, we braid temporality, consciousness, and corporeality to create and understand our experience. The goal of this paper is to investigate the question: How does time influence our experience of the social, cultural, physical, and emotional environments we occupy and move through when we care for someone who is ill? I draw from the philosophy and cognitive science literature, and provide exemplars from qualitative interviews I conducted with 135 family caregivers to adults with cancer. The family caregivers describe their experiences at three time points: when their family member receives the cancer diagnosis; when caring for their family member after surgery; and, when caring for their family member during chemotherapy. The family caregivers’ stories demonstrate the profound persuasion temporality, corporeality, and consciousness have on each other, and collectively have on one’s experience of illness.
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Panel IV.D
Health professionals’ practices of writing as a technology of the self: values and procedures in contemporaneity
Ana Zimmermann
The act of health professionals writing about themselves and their practices has been a field of investigation and education in the realm of Medical Humanities and Narrative Medicine. The exercise of writing allows the recognition of different ways of thinking and doing starting from the development of a critical and reflective attitude about oneself and their professional practice. It lies in the exercise of a narrative-interpretative knowledge for the development of ethical attitudes and relational skills. This paper outlines a Foucauldian perspective of the practices of writing used by healthcare professionals in contemporaneity. Based on Michel Foucault text, “Self-Writing” (1983), the author raises two questions: what are the values and procedures associated to the writing practices and in which conditions they can be considered a sort of askesis? The author examines specific forms of ethopoietic writings in the first and second centuries, such as the hupomnemata and the correspondence to explore the art of disparate truth and the exercise of openness to the other. The ability to manage different ways of thinking and truth is central to contemporary practices and literary methods focus on the ethical force of exchanging narratives within writing groups.
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‘Healthcaring’: Learning to Resist the Logic of Letting Go through Arts-Based Curriculum in a Student-Run Free Clinic
R. Amerisa Waters
Contemporary healthcare education does not adequately prepare students for some of the most persistent moral challenges of medical practice in the United States. Healthcare in the US includes practices and policies of exclusion limiting who has access to life-extending and life-saving treatments. This visual presentation addresses examples of the structural harms and inequities that pervade the US medical system and their effects on healthcare learners. I theorize the ways in which it has become logical in healthcare practice to “let go” of some individuals who struggle to access care. I call for educational interventions that increase understanding, shape attitudes, and challenge existing biases of those harms in healthcare practice. Looking at the free-clinic movement as a space that has historically rejected this letting go, I argue that arts-based curricula should be an integral part of developing understanding and critical thinking around the systemic failings of the US healthcare system. Focusing on the space of the free clinic as a microcosm of the disparities present in the broader US healthcare system, I design an arts-based curriculum that cultivates critical consciousness amongst learners and enables recognition of institutional injustices in healthcare. An arts-based curriculum grounded in arts activism framings can nurture creative inquiry and critical thinking in our future healers and empower them to combat healthcare inequities and injustice through everyday action. In this pedagogical frame, healers learn that change happens through a never-ending process of individuals recognizing a need and taking action.
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Historicizing and Problematizing “Do Everything”: A Verbal Artifact Excavated at the Bedsides of Critical and Palliative Care Patients
Susan Lamb, Michael Shamy
Utterances of the phrase “do everything”—whether spoken by someone providing or receiving critical or end-of-life medical care—appear to have increased since the 1990s. Our historical research contextualizes this perception. We suggest that patients’ and families’ demands to “do everything,” as well as recent calls from physicians and ethicists to banish the phrase, represent a significant recalibration of decision-making dynamics within doctor-patient relationships in the 21st century. Our approach is to treat the phrase “do everything” as a curious found artifact. The sites we excavate are medical, ethical, and historical bodies of scholarship, as well as archives of institutional records and historical newspapers. Our findings indicate that demands or promises to “do everything” are situated within a long historical trajectory from hospice (a place to be saved religiously) to hospital (a place to be saved medically), and within more recent and rapid historical changes: the advent of informed consent, cost-benefit analyses, and patient autonomy in twentieth-century medicine. We also show the significance of discordant shifts in attitudes towards death among healthcare providers and recipients during the last century. This research illuminates a recent transformation—one characterized by conflicts that emerge around medicine’s seemingly limitless capacity to prolong life, medical definitions of evidence and therapeutic futility, and expanding social policies that promote patient autonomy and the rights of non-experts to play a role in complex medical decision-making. Contested, shared, and substitute decision-making are not new, but their applications and implications are magnified by the availability of newer life-sustaining technologies.
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Panel IV.E
‘We uncertain step’: Dickinson, Blindness, and Physical Education
Jess Libow
This paper posits Emily Dickinson’s poetry as a site for reconsidering an often-overlooked division of the health sciences: physical education. Exercise was a key component of nineteenth-century women’s education. As a student at Mount Holyoke Female Seminary, Dickinson performed the calisthenic exercises and distance walking that headmistress Mary Lyon believed supplemented rigorous studies. Dickinson’s mentor, Thomas Wentworth Higginson, also advocated for women’s physical education in schools. Dickinson, however, offers a model of physical activity that embraces its edifying potential while also imagining more diverse embodied experiences. She depicts an intimate relationship between physical activity–especially walking –and knowledge that is adaptable to different embodiments. While scholars have addressed her impaired vision and her use of visual metaphors, little attention has been paid to her recurring images of walking in the dark. I read the “uncertain step” and “precarious Gait” with which Dickinson’s speaker navigates unknown landscapes as scenes of exploration. For Dickinson, to “grow accustomed to the Dark–” entails discovering a unique, “almost straight” mode of inhabiting and comprehending the world (Poems 238, 926). By attending to such imagery, I argue that Dickinson neither rejects the link between exercise and knowledge nor promotes it. Instead, she carves out a more flexible conception of the learner’s body by presenting physical activity itself as a process of deducing the relationship between self and world.
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The Psychiatrist’s Tragedy: Hereditary as an Experiment in Biological and Supernatural Horror
Catherine Belling
In an ongoing project examining connections between health care and horror, I explore two models for explaining violent and incomprehensible acts: psychiatry and the supernatural. Art, I show, is where the seemingly incommensurable discourses of mental illness and evil haunting can become productively, even therapeutically, compatible. I focus on a single text, Ari Aster’s 2018 horror film, Hereditary, the title of which overtly invites a genetic, or at least a generational, understanding of its central event: the violent collapse of a family. Ellen, an elderly woman with dissociative identity disorder, dies. Her daughter Annie inherits a malignity that can be explained in two ways: biomedical (Annie’s father’s terminal depression; her schizophrenic brother’s suicide; her daughter’s behavioral anomalies)and supernatural (Ellen’s spiritualist dabbling has possessed her offspring with demons). Yet neither explanation is allowed to overcome the other. Instead, the practice and products of art—as the re-presentation of the world in story, image, film—both contain and disturb both. Annie is an artist, her talent inherited from her mother and passed on to her daughter. Her husband, Steven, is a psychiatrist. A classroom scene in which the son, Peter, studies the Oresteia slyly gives us a theory according to which medicine and art, the DSM and the horror movie, together work to subject both illness and evil to the rigorous rules of Greek tragedy. Psychiatry, figurative art, and filmmaking—Hereditary itself—are framed, finally, as equally hopeful—and equally doomed—ways of containing the inescapable chaos threatening all human endeavor.
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The Deaf Gene’ as Narrative Claim to Heredity: A Discursive Exploration
Rachel Kolb
In an era of increasing debate about genetic testing, two modes of narrative framing can inform current understandings of deafness while using the terms of genetic descent. On one hand, the pride that the Deaf community has in deafness, signing, and cultural identity can lead to traditional introductions of oneself as “born to hearing parents,” ranging all the way to “fourth or fifth generation Deaf.” This narrative frame (which focuses on articulating “generations” of deafness) claims deafness as a matter of cultural but also physical descent or heredity. The contemporary Deaf community, in some quarters, has also exhibited a growing interest in genetic testing: not as an avenue toward treatment, but as an added tool for articulating notions of family continuity. One’s “deaf narrative,” then, becomes increasingly accessible through the language of genetic material. On the other hand, the narrative of mainstream medical diagnosis increasingly targets deafness as a location for genetic therapy, intervention, and even selection. This paper presentation will consider such contrasting discursive structures as different types of “environment” that can cultivate familial stories of deafness. Drawing upon sign language vlogs and other contemporary cultural material, alongside current work from disability bioethics, I will consider how competing claims to the language of heredity create distinctive imagined environments in which “genetic” deafness is used to validate or to threaten already-imagined family structures and communication expectations. I aim to add richer narrative approaches to existing bioethics discussions, and also aim to contribute to our understanding of the “genetic” as a discursive and political term.
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Panel V.A
None of us is as smart as all of us: Working together to create positive outcomes
David G. Thoele, Sheri Reda, Susan Cotter-Schaufele
Medical settings are inherently disempowering, often set up to save lives quickly, without delay. However, illness is often stressful and challenging for patients, families, as well as health care providers. Positive anticipation for pain relief and hopeful outcomes may be accompanied by intense emotions such as sadness, self-doubt, blame, shame, guilt and regret. Systems organized in favor of collaborative journeys toward health could realize better outcomes. Music therapy and creative writing provide opportunities to optimize emotional wellbeing for patients and health care providers, increase personal power and agency, build resilience, improve care and reduce stress. This panel considers the value of non-traditional communication in expressing the patient’s experience and creating a working template to re-frame the medical journey in a way that reduces powerlessness and encourages collaboration between patients and health care providers. Each member of this panel has expertise regarding a different aspect of patient care. Likewise, panel members have worked with a variety of expressive methods and in many different patient-caregiver scenarios. Dr. David G. Thoele, pediatric cardiologist, is Director of Narrative Medicine at his hospital. He learned a new perspective when his daughter got sick and he experienced the medical system from a parent’s point of view. He developed the 3 Minute Mental Makeover (3MMM), a short writing exercise in which families and health care providers write together in hospital and outpatient settings, and has used the 3MMM with over 3000 people in ICU and outpatient settings. Sheri Reda is a writer, editor, and facilitator who consults with individuals seeking personal and professional education, written expression, and celebration. Sheri is a published poet and seasoned storyteller in Chicago’s live-lit community. She enjoys working with people in transition and helping them achieve their potential for mental, emotional, and spiritual growth. Susan Cotter-Schaufele, board certified music therapist, educator and consultant, has worked with patients, families and healthcare providers for nearly 30 years. Currently serving with Rainbow Hospice and Palliative Care, Susan designs interventions with live and recorded music to increase physical, emotional and spiritual comfort for those facing health challenges, as well as those providing health care. David, Sheri, and Susan are all members of the Narrative Medicine Committee at Advocate Children’s Hospital. This multidisciplinary group of doctors, nurses, patients, music therapists, poets, psychologists, Child Life, chaplains and administrative staff meet monthly to share meditations using a variety of media, and participate in narrative writing exercises. This group began as strangers and became oddly committed to one another over time. In this presentation, panelists will explore the arts as a method for bypassing the tyranny of linear processes and humanizing the medical journey. Together, we will break down the barriers to participation in the panel format itself, inviting participants to experience a live music meditation, then engage in the 3MMM. Participants will then have an opportunity to discuss this creative arts experience, as a way to help process illness and other stressful events.
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Panel V.B
Story RX: Storytelling in the Medical Humanities in Practice
Pablo Romano, Laurel Braitman, Candice Jeehae Kim, Noemie Catherine Levy
The focus of this panel is to explore the craft of storytelling in the context of medical education and (early clinical) practice as well as in individual long-term self-directed and mentored creative projects in the medical humanities. Initial studies have pointed to the wellness effects of creative and reflective writing interventions in the lives of clinicians but we believe these markers, while important, fall short of documenting the rich and varied effects of true integration of creative writing, speaking and other storytelling opportunities in the daily lives of medical students and healthcare providers. In this panel we will discuss five different forms of storytelling instruction and practice under way at the Stanford University School of Medicine as well as our own efforts to measure impact: multi-day overnight storytelling retreats for medical students, drop-in creative writing workshops for the entire medical community, individual (mentored) year-long creative nonfiction and narrative medicine projects, student-led creative writing workshops, and a live, onstage storytelling series for medical students by medical students who receive individualized speaker coaching and story/presentation skills development. In this panel professor Laurel Braitman and Stanford medical students Noemie Levy, Pablo Romano and Candice Kim will each speak to the development, leadership of, and participation in these programs and their often-surprising effects on clinical education, personal development, and speaking and publishing opportunities. We will share best practices and common pitfalls, ethical concerns, as well as the ways other institutions might establish similar programs dedicated to creative nonfiction, journalism in the context of medical humanities, live storytelling and more.
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Panel V.C
Dating Websites and Disability Identity: Presentations of the Disabled Self in Online Dating Profiles
Teresa Milbrodt
This paper examines how people with disabilities represent themselves in digital spaces through narratives and pictures posted to online dating sites. Through analysis of these profiles, I argue that they reflect particular patterns in disability identity politics. My research reveals two kinds of profiles. The first is posted to sites such as Dating4Disabled, which are designed for people who identify with disability communities, and who have a wide range of disabilities ranging from visual and mobility impairments to people on the autism spectrum and those with invisible disabilities such as depression. On Dating4Disabled, individuals have a more developed sense of a political disability identity, regard disability as a positive or neutral condition, or they are seeking friends within disability communities. The second type of profile is posted to widely-known dating sites such as Match.com, where anyone may post. Many disabled individuals posting on this site make the case that they could pass as normal, which may be the result of internalized ableist attitudes, or not wanting to possess a stigmatized identity. These profiles confront mainstream notions of disabled people as helpless, and position disabled people as “able” romantic partners. They are also more likely to depict disability as a temporary status and suggest the writer’s desire to return to a previous ability level. This impulse reflects Robert McRuer’s theory of compulsory able-bodiedness and the pressure to claim ability to gain acceptance in online and offline environments, reflecting how the Internet does not make the disabled body immaterial, but reiterates ableism.
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Disabling Surroundings: Exploring Physical Difference in Graphic Novels
Madalina Meirossu
This project looks at Cece Bell’s visual exploration of her experience following a childhood illness that led to significant loss of hearing. The graphic novel El Deafo chronicles the young child’s struggle with difference: both difference from a previous period in her life, and from the other children in her life. With respect to the latter, there are many dimensions of difference operative in the experience of the young protagonist, but Bell’s decision to represent characters in the form of humanized bunnies allows her to rise above racial differences in order to focus the reader’s attention on the differences related to the dis/ability, and at times the gender, of the characters. My analysis highlights the intersection between the main character’s internalized gender expectations and her newly acquired difference, her coping strategies with difference in social and institutional contexts that fetishize or reject this difference, and the author’s skillful visual representation of personal crisis. Using Disability Studies as my theoretical framework (e.g. the work of Sami Schalk, Marion Corker, Carol Thomas, Eli Clare, to name only a few authors), I show that Bell argues for the new normalcy of a body that, though placed in a vulnerable position, demonstrates that physical difference–medicalized as abnormality–does not equal a lack of resources or helplessness, nor does it equate with heroism.
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Risks of Disability Aesthetics
Andries Hiskes
In his book Disability Aesthetics (2010), Tobin Siebers proposed that disability should be reconsidered as a critical framework that questions the presuppositions of aesthetic production as well as considering disability as an aesthetic value in itself. Arguing that disability should be regarded as the beautiful variation of the human form in art, Siebers concurrently denounced aesthetic categories associated with disability, such as degeneracy and the ugly. Although sympathetic to some of Siebers’ plights, in this paper I examine some of the risks that a prescriptive disability aesthetics may have, as well as considering the aesthetic categories denounced by Siebers in their affective and political functioning. Through close-readings of aesthetic theories that engage with the ugly and the degenerate as aesthetic categories, I argue that these concepts have viable potential for cultural disability studies in their ability to evoke a wide plethora of affective responses that may initially seem contradictory, but can thereby undermine aesthetic logics that imagine the beautiful and the ugly in strictly binary terms. I argue that the political potential of the categories of degeneracy and the ugly rests on their capability to highlight disability’s ability to destabilize its social and political environment precisely when it should be regarded as beautiful, and thereby aid in reconsidering the relationship disability aesthetics has to the political, ethical and cultural contexts in which it is placed.
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Panel V.D
Hildegard of Bingen
Katherine Burke
At about the age of 40, 12th century abbess Hildegard of Bingen had a divine vision instructing her to write. This midlife crisis/awakening was the inciting incident that provoked Hildegard to reimagine her life. For the next 40 years she tirelessly produced liturgical drama and music, theological texts, medical and botanical manuscripts, poetry, and even an entire language. Hildegard used the Latin viriditas—greenness, vitality, growth, and blooming—to describe not only the botanical world and the healing power of plants, but the spiritual and creative force within humans. This performance weaves together Hildegard’s writings to explore her work in botany and medicine, as well as her own viriditas as a woman in midlife. Through her writing, Hildegard encourages us to reimagine our own future—and the future of health care—as one in which we honor and nurture viriditas in each of us.
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The Journey of the Wandering Soul: Philosophy, Painting, Dance, and the Question of Personhood
Peter Steeves, Danielle Meijer
Having spent more than twenty-five years as a bioethicist working in hospitals serving diverse populations where it is a daily challenge to communicate complicated medical information/histories with clarity, respect, and understanding on both sides, I have come to believe that philosophy can help us sharpen our concepts, but it is often the case that art is even better at achieving understanding. Conflicts in and out of a hospital setting often begin due to a fundamental disagreement concerning the concepts of subjectivity and personhood in play. I will briefly trace the history of European modern conceptions of personhood through philosophy and art (especially in paintings), and then take up a test case drawing on my time at a hospital serving a large Hmong population—a group with a markedly non-European conception of subjectivity and identity, this difference sometimes leading to miscommunication with tragic results. The talk concludes with a live dance performance that will illustrate how art and philosophy can be used in tandem to think through the question of personhood both within and without a medical setting.
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Photography and Bioethics
Tod Chambers
Often cited as one possible beginning of bioethics, journalist Shana Alexander’s Life magazine article “They decide who lives, who dies” detailed to the general public the controversy concerning who had access to dialysis machines. Life was a popular magazine that promoted photojournalism and there are a number of striking photographs that accompany and influence the reading of Alexander’s piece, dramatic, staged photos of the “God Squad” as well as images of the patients approved for dialysis with their families. Photography and bioethics have long been aligned with one another; photographic images often provide a visual representation of a moral problem that are as powerful or at times more powerful than textual representations. In this presentation, the importance of photography in bioethics will be explored. In particular, this presentation focuses on the manner in which a particular photograph can create what Henri Cartier-Bresson referred to as a “Picture-Story,” a single image that can capture the “core” of a particular story. The importance of photographs will be examined in relation to various bioethics cases: the justification for novel medical intervention for “Ashley” aka “the Pillow Angel,” the arguments for keeping Terri Schiavo on life support, defense for withdrawal of life support for the paralyzed Tim Bowers, and the ongoing argument concerning the life status of Jahi McMath. In each of these cases, picture-stories created powerful rhetorical arguments for or against particular medical interventions. Special attention will be placed on the question of the indexical nature of photography.
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Panel V.E
Narratives of the other in dominant social consciousness: Radical redefinitions of experience in the everyday
Em Rabelais
The nexus of narrative and bioethics highlights patient perspectives of health and illness, often adding to ethical reflection and decision-making. In some ways, narrative approaches to the clinical encounter rebalance power by increasing the value of patient contributions. While illness narratives may include structural inequities, the inequities that bind to health disparities—even in the absence of illness—are rarely made prominent. Social others include the disabled navigating ableist structures, people of color and the experiences of racism, and those subject to the dominations of normative whiteness. Clinical attendance to social and related determinants of health is unfortunately often only a lip service that offers the barest hint of what “disability” or “racism” or “whiteness” means to patients. Why is it only through highly successful and/or controversial flipped narratives, generally depicted through fantasy, that clinicians, researchers, educators and others are able to understand actual, present, and lived realities of social others? These and other narratives are flipped because they depict social others’ normative realities in a manner that can only be seen as fantastical when brought to dominant social consciousness. Recent examples include the films The Shape of Water (persons with disability can participate in sexual love, but only with a supernatural creature), Get Out (racism from perspective of a black man, yet portrayed as both a “Twilight Zone”-style horror and a documentary), and Black Panther (superior technology and power is not held by white people).
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Medicine’s Strange Encounters with Patients and Texts: A Feminist Phenomenological Intervention in Health Humanities
Maryam Golafshani
In the 2016 literature and bioethics special issue of Literature and Medicine, Olivia Banner identifies a significant problem in the way medical humanities scholars treat race in literature: not only is race often over looked by the field, but when it is treated, race is reduced to an interpersonal concern rather than structural problem. Inspired by Banner, I contend that a similar problem can be traced in the way scholars have applied Emmanuel Levinas’ philosophy to medicine and healthcare. Since the turn of the 21st century, Emmanuel Levinas’ phenomenology of the Other has been increasingly used to theorize an ethical clinical encounter. I argue that such scholarship abstracts ethics from politics and thereby is unable to account for a truly ethical clinical encounter that tackles social injustices like racism in medical institutions. I critically trace how Levinas has been used in medical philosophy, health humanities, and narrative medicine to propose an ethical clinical encounter that ultimately reproduces both patients and literature as medicine’s fetishized Others—that is, as Others encountered at an interpersonal level that neglects how institutional problems, such as racism, shape such encounters. Instead, I look to Sara Ahmed’s reading of Levinas in Strange Encounters: Embodied Others in Post-Coloniality (2000) to mobilize Levinas’ phenomenology for medicine and healthcare in such a way that attends to both the interpersonal physician-patient encounter and the institutional problems that plague such encounters.
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The trouble with teaching Wendell Berry: Health, land, community, limits, and why we might, like, care
Brian Volck
In a Medicine and Literature elective for fourth year medical students I taught for fifteen years at the University of Cincinnati, the syllabus always included selections from Wendell Berry. Students strongly objected to “some Kentucky farmer’s” claims that a highly individualized, technocentric medical model erodes essential links among patients, communities, and the places they inhabit. When I used the same material with experienced primary care residents in an elective on Poverty, Justice, and Health, they were more receptive, if still somewhat skeptical. Beginning with these experiences, I explore challenges in teaching Berry’s critique of contemporary health care. In essays, fiction, and poetry, Berry catalogues how “fanatically individualistic” medical practices, assumptions, and language alienate patients from communities; bodies from mind, spirit, and surroundings; and the body’s health from the land’s. For Berry, “the community –in the fullest sense: a place and all its creatures –is the smallest unit of health and that to speak of the health of an isolated individual is a contradiction in terms.” In examining brief excerpts from all three genres, I identify key elements in Berry’s work learners may prematurely reject, including responsible dependence, bodily limits, local wisdom, prudent use of metaphor and abstraction, and problematic gaps between medical science and its application. I will suggest ways of addressing these obstacles. I conclude with reasons why this major author’s critique of health care should be better known and critically engaged.
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Panel VI.A
Painted Bodies: Practicing the Science of Anatomy and the Art of Human Touch in Medical School
Gretchen Case, Karly Pippitt, Susan Sample
Teaching future physicians about the lived experience of individual bodies and the real and imagined boundaries of those bodies is a complex challenge that calls for more than a purely science-and-skills model of education. For the past five years, the panelists have taught a medical school course that includes arts-and humanities-based approaches to ethics, sex/gender, disability, health care delivery, culture, professionalism, and other relevant topics that are required for an accredited medical curriculum but often relegated to the margins of curricular time. Two of the panelists (Pippitt, Case) co-direct the course and the third (Sample) is a faculty facilitator. Each year in this course we hold a session called “Practicum in the Art of Medicine,” in which first-year medical students are tasked with painting anatomical structures onto the bodies of faculty, staff, and students who have volunteered as models and wear minimal but modest clothing. This exercise serves two important purposes. First, it reinforces concepts learned from anatomy texts and cadaver labs, and makes them confront the reality of individual bodies. A student may have to adjust her understanding of the placement of a blood vessel, for instance, when painting it on the body of someone whose vessel is not in the expected location. Second, students are challenged to touch someone that they are more than likely uncomfortable touching, spending almost an hour with their hands on these bodies. A faculty facilitator is in the room, helping them think through their discomfort and revelations, and the models often do as well. Some of our models are faculty and staff, with the anatomy faculty and teaching assistants well represented. Some of our models come from an undergraduate course in the Rhetoric of Medicine, in which students explore the doctor-patient relationship through different discourses, including the human body with its unique ability to disrupt medicine’s master narratives. In this panel, we will discuss how body painting in small groups, with facilitators, has become so important to our course. Taking an arts-based, hands-on approach has become the most successful way we’ve been able to discuss touch and boundaries in this course. We will share written responses from undergraduate students who, as anatomical models, crossed boundaries separating patients and providers as they enacted the vulnerability of patients and empathy of providers. We will demonstrate the activity, with one of us (Case) acting as a model, and invite members of the audience to come paint as well. We will offer important guidance for anyone who wants to try anatomical body painting as part of their own curriculum.
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Panel VI.B
Health Humanities and Health Technologies: Opportunities to Define Future Paths
Kirsten Ostherr, Andrea Charise, Mikki Kressbach
Just as the digital health sector expands, humanistic themes like engagement, empathy, creativity, and intimacy, are starting to take center stage in media and promotional materials. This emphasis on issues and concerns long at the heart of health humanities scholarship and practice presents an opportunity for health humanists to enter an emerging discussion, connect more deeply with health technologists, and ultimately define important future paths in the interest of improving patient health and health care imagined more broadly. In this session, we address the specific ways health humanities scholars, through diverse scholarly backgrounds, may use their expertise to guide the formation of technologies that are ethical, critical, creative, and emancipatory.
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Panel VI.C
Sikh therapeutic geographies and the making of healthy spaces
Arlene MacDonald
“Therapeutic geography” is a polyvalent term. Health geographers have used it to reference the range and dissemination of spaces of therapy and the forces that induce them to spread, contract, or reposition themselves (Dewachi et al 2014). Cultural geographers have used the term “therapeutic geographies” to explore how the complex symbolic constructions of particular places or landscapes (real or imagined) assume correlations with well-being and good health (cf Andrews 2004, Williams 2007, Wilson 2003). A smaller subset of critical geographers have used the term “therapeutic geographies” to refer to the ways bodies (somatic, social, and political) take shape in concert with their therapeutic topographies (Del Casino 2007, Buzinde and Yarnal 2012, Moreno and Curti 2012). This paper argues that the analytic framework of “therapeutic geographies” might profitably be employed to understand the complex dynamics of Sikh attempts to make “healthy spaces” for their community in a religiously plural environment. Ethnographic research with Sikhs in Brampton, Ontario revealed a wide range of health endeavors effecting a new and mobile topography: one with nodes in gurdwaras and hospitals, one situated in city parks as well as transnational networks, one that delivers both spiritual healing and social medicines, one that articulates with the wounds of dislocation and exclusion that have so deeply impacted Sikh social and somatic bodies, yet simultaneously works to fashion new spaces of inclusion in the political environment. To claim this array of intersecting places, practices, politics and potentials a “therapeutic geography” affords a new way of understanding the relationship between religion and health.
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Traumatic landscapes: two geographies of addiction
Jesse Proudfoot
The confluence of the contemporary opioid crisis and the fallout from the Great Recession has prompted renewed interest in theories of addiction that can account for the relationship between individual symptoms and large-scale socio-political forces. Gesler’s (1992) theory of ‘therapeutic landscapes,’ examines the ways that social, political, and cultural forces, embedded in place, contribute to health and wellbeing. This article considers the inverse of the therapeutic landscape: the traumatic landscape that harms its inhabitants, proposing it as one way of understanding how addiction is related to place. Drawing on eighteen months of ethnographic fieldwork with drug users in Chicago, Illinois, this article considers the life histories of two men whose addictions are profoundly related to place. Through close readings of these cases, I develop two arguments: first, that addictions are sometimes the result of environmental stresses, and second, that addictions can also be related to place through drug user’s subjective relationships to sites of trauma. Drawing on research in health geography, medical anthropology, and critical psychology, I contribute to debates on the relationship between place, subjectivity, and illness and I propose Freud’s concept of the actual neurosis as one way to theorize addiction’s relationship to trauma and temporality. Finally, through my use of the case history method, I contribute to methodological debates about how to research place and health, arguing that close attention to lived experience is necessary to draw links between macro-scale arguments about environmental stressors and the subjective experience of addiction.
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Wormy Borders: Public Health Hookworm Narratives and Fictional Accounts of Citizenship and Belonging
Stephanie Larson
In 2017 research revealed that hookworm (an intestinal parasite spread through feces-contaminated soil) was still present, and a problem, in the United States. The research spread to the media which treated the story as shocking and surprising because hookworm is currently classified as a neglected tropical disease often attributed to low-and middle-income countries (LMIC). Newspapers, blogs, and even a commission by the United Nations seemed to approach the hookworm discovery with the same question: how did a ‘global’ parasite turn up in the ‘local’ health landscape? This presentation explores the way public health narratives around hookworm shaped real and fictional accounts of borders and nationality. In the first half of the twentieth century, hookworm served a dual function: on the one hand, public health narratives conflated hookworm’s eradication with good US citizenship, particularly for individuals in the US South (where, due to the warm, tropical climate the parasite flourished). On the other hand, hookworm was one of the most frequently used exclusionary criteria for denying Asian immigrants entry to the United States through the Angel Island Immigration Station in San Francisco. Literature and public health have engaged in an exchange of cultural codes for disabled, healthy, and unhealthy bodies and minds. Using a combination of archival data and literary analysis, I look at the way public health narratives conflated disability and hookworm into a single marker for immigrant exclusion. I then trace how these public health narratives continue to circulate in fiction today to mark ‘local’ v. ‘global’ borders.
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Panel VI.D
The Body Hygienic: Environmental Racism and Environmental Health in Nineteenth Century African American Narratives
Emily Waples
The term “environmental racism” was coined by Reverend Benjamin Chavis in 1982 to describe a form of structural violence defined in part by the disproportionate exposure of people of color to the environmental causes of morbidity, mortality, and disability. Disrupting conceptualizations of racialized violence that rely primarily upon the spectacle of corporeal brutality, exposés of environmental racism redirect our attention to the subtler machinations of what Rob Nixon has notably termed “slow violence”: a kind of systemic degradation whose effects are insidious, gradual, and cumulative. Yet well before environmental racism was inaugurated into the popular lexicon by the PCB landfill protests of the1980s, African American writers and activists explored and exposed the ways in which the natural and built environments of enslavement were leveraged as technologies of racial subjugation. This paper demonstrates how nineteenth-century African American authors such as Sojourner Truth, Hannah Crafts, and William Wells Brown anticipate the rhetorics of environmental racism and environmental health as they critique the politics of neglect in the plantation South. Following the work of scholars like Saidiya Hartman, who has influentially examined the ways in which the violence of slavery consists in “the terror of the mundane and the quotidian, ”it argues that these authors use their narratives to promote an alternative politics of witness, one that demands a more expansive understanding of the environments of violence and a more ethical investment in the health of black bodies.
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‘Tropical’ Environments and the Politics of Health
Jessica Howell
This paper examines the Hippocratic “air, water and places” tradition of medical geography in the nineteenth century, which suggested that moving or reconfiguring settlements could decrease the death toll suffered by colonists. Pro-imperial appropriations of this ancient tradition of climatic determinism suggested that “northern races” are fated to expand their influence and control over vast swaths of the earth, due to their more vigorous and martial natures. However, nineteenth-century discourses of colonial medical geography and topography were often deeply ambivalent and contradictory. Many writers did not react by using pro-imperial discourses of climatic control. Some used the imaginative potential provided by the structures of fiction, for example, to grapple with concepts of chronic disease, bodily transformation, adaptation, and degeneration. This paper examines Charles Dickens’s Martin Chuzzlewit and Henry James’s Daisy Miller. It demonstrates how nineteenth-century transatlantic fiction depicted characters becoming ill from acute malaria in order to discursively ‘map’ safe and appropriate places for white Anglo British subjects. In conclusion, this paper discusses how contemporary discourses about climate change and “tropical” disease still draw upon similar associations between racial and ethnic categories, illness and global geographies.
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Sensory Environs of the Nineteenth-Century Asylum
Rachel Blumenthal
My talk lays the groundwork for reconceptualizing symptomatology as an act of narrativity. The new sensorial epistemologies that I identify in the nineteenth-century hospital environments described by asylum narratives, including Elizabeth Packard’s Prisoner’s Hidden Life (1868), Lydia Smith’s Behind the Scenes, or, Life in an Asylum (1878), Clarissa Lathrop’s A Secret Institution (1890),and Charlotte Perkins Gilman’s “Yellow Wallpaper” (1892), constitute the olfactory and the haptic as a new sensorium of feminine agency, subverting the logocentric, enlightenment hierarchies of sensation that prioritized sight and sound. Intervening in cultural and scientific histories of sensation, I examine instances where undifferentiated or disordered sensation engenders not only sick subjects or (non-)citizens but also new capacities and subjectivities. Reading autobiographical asylum narratives alongside early psychological treatises, I show how women’s capacities of sense-perception are crucial to understanding the psychiatric binding of the political. As such, I argue that attending to the sensorium of the unfamiliar in literary texts unfastens sensation from its pivotal role in the formation of a rational, autonomous, and patriarchal subject, engendering new sensorial epistemologies that refashion apparent cognitive dysfunction as the positive condition for mutually constitutive relations between patient and physician, text and reader, and sense and stimulus.
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Panel VI.E
From Classroom to Operating Room: Locating the Heart of Health Humanities
Lois Leveen
As we examine “the social, cultural, physical, and emotional environments” of our health humanities practices, how might we formulate creative as well as scholarly and pedagogical responses to our own experiences within these environments? What can such multifaceted responses tell us about the value of the health humanities? My presentation explores the impact of moving from the familiar (to me) space of the humanities classroom into the unfamiliar space of the operating room. This movement elucidates what is at the heart—literally and figuratively—of health humanities teaching and scholarship. While teaching a six-week public humanities seminar on the heart in literature and bioethics, I was invited to observe open heart surgery. This unanticipated relocation proved exceptionally productive. My training in the humanities, with emphases on equity and interdisciplinarity, shaped what I assigned and how I taught in the seminar. But entering the hospital, and particularly the operating room, as a “humanities practitioner” engaged my curiosity yet displaced me from a position of intellectual mastery. The experience sharpened how I taught the remainder of the seminar; it also inspired me to explore a creative rather than a purely analytic/critical response to my own wonder at what I experienced: in the ensuring months, I crafted my first poetry chapbook, which focuses on observing the surgery. In this presentation, I draw on this process to offer a model for deepening the impact of the health humanities by crossing spatial/geographic, disciplinary, intellectual, and creative boundaries.
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Reframing Medicine in the Medical Humanities: Teaching and Outreach in Alternative Medicine Environments
Emily Beck, Margaret Flood
The role of the medical humanities in the environment of medical education often revolves around biomedical education. The discipline of history in particular has been shown to be crucial in developing a holistic professional sensibility for medical providers, seen especially in the number of medical historians teaching within medical schools. However, we have found that historical scholarship and the use of primary source materials are an important and infrequently-utilized resource by which providers of alternative medicine may explore the identity of their practice and their profession, place themselves within a broader narrative of western medicine, and bring together academic and diverse healthcare environments. While alternative medicine providers including western herbalists often draw upon historical narratives to support both professional identity as well as practices, they are rarely found within academic environments. History of medicine programs and medical rare book collections in turn rarely engage with alternative medicine communities, although they often study the history of those practices. While alternative practitioners such as herbalists are often invisible or even contrary to the allopathic eye, they comprise a well-used and growing folk and professional substrate to the health environments. This paper will present our experience over the past several years in bringing together western herbalists, rare books, and the study of the history of medicine. We will discuss our collaborations with these providers in both academic and herbalist environments in order to argue for and provide strategies for the integration of non-biomedical medical traditions into teaching and research in the medical humanities.
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Use of Mixed-Methods Approach to Assess the Impact of a Pre-professional Health Humanities Honors Course on Developing Interpersonal Skills
Therese Poirier
Objective. The purpose of this study was to use a mixed methods approach to provide evidence for growth in empathy, respect for patient autonomy, ability to relate to others, and self-awareness as a result of participating in a health humanities course. Methods. The mixed-methods approach consisted of using a quasi-experimental design of a pre/post course survey to obtain quantitative data and qualitative data from reflective writings and student papers. The reflective writings and student papers were evaluated using an adapted rubric to assess the quality of the reflections on measures for empathy, respect for patient autonomy, ability to relate to others, and self-awareness. Results. Twenty-five students were enrolled in the course. Matched pair data was available from 22 students (88% response rate) for the quantitative survey data. Qualitative data was available from all 25 participants. The pre-and post-course surveys revealed a statistically significant increase in students’ empathy (p<.001) as a result of completing the health humanities course. The final written report contained the highest quality of students’ reflections compared to all other reflective writing assignments. Evidence for understanding empathy was prominent in the students’ final written report. Conclusions. The evaluation of development of students’ interpersonal skills through use of health humanities resources maybe reproduced by using a mixed-methods assessment approach. The quantitative and qualitative data presented provide some evidence for enhancing students’ awareness and understanding of empathy in particular by utilizing health humanities resources in an undergraduate interdisciplinary seminar course.
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Panel VII.A
The Entwinement of Practice and Humanities: Perspectives from the Community, the Global Arena and End of Life Care
Sara Adams, Gerry Gorman, Rebecca Singer
The humanities celebrate the diversity of human experience. Healthcare practice offers a repository for textured stories. Incorporating the humanities into nursing education provides opportunities for epiphanies and resistance. Both are illuminating. In this panel three nurse educators and practitioners share the benefits and the challenges of introducing literature and reflective writing into their required nursing courses. Using our practice as exemplars, we will demonstrate how we have used the humanities to help students appreciate the lived experiences of community engagement, global humanitarian response and end of life care. Community engagement experiences, specifically with underserved or marginalized groups, often reinforce the power structure of the practitioner as expert and the community member as passive recipient of care. Through the use of selected literary excerpts as pre-briefing and debriefing strategies, students consider multiple perspectives. Instead of a “learning experience,” they are encouraged to challenge how they view the health of communities while also exploring themes of social justice as they relate to healthcare. As our world becomes more interconnected, images from all over the world flash across screens held in the palm of our hands. Today increasing numbers of students express interest in global health practice. Yet their life experiences necessarily limit their understanding of how it might feel to be in those settings. The humanities, especially films, prose and storytelling, provide a vehicle to imagine the lived reality of conditions requiring organized humanitarian response to individuals and communities. Palliative and end of life care offer a different lens through which to view health care delivery. With the focus no longer on cure, hope redefines itself. Poetry that confronts mortality, memoir that shares the journey of the dying, illuminate what often remains shrouded in mystery and stigma. When students contemplate advance directives and reflect through writing, they give expression to the anxiety which can impede future clinical encounters. There is no ‘single story’ which monopolizes the dying process. The narratives we share lessen the magnitude of our own uncertainty. In this session, we will offer participants the opportunity to respond to selected video and literary excerpts, much as we do in our classrooms.
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Panel VII.B
Live Storytelling Workshop: So you want to tell your story
Laurel Braitman, Pablo Romano
The medical humanities are rich in opportunities for storytelling—written and oral. Increasingly, the importance of live storytelling has been made clear by the success of podcasts, live storytelling series such as The Moth, and more. In this workshop, Pablo Romano, a second-year medical student at Stanford University and producer of a popular live storytelling series, and Laurel Braitman, Stanford Medicine and the Muse Writer-in-Residence, will guide attendees through exercises that will explore the challenges and merits of live, oral storytelling. Attendees will learn tips, tricks, and techniques they can use to become better storytellers–whether they are presenting scholarly research, aiming to inspire students and colleagues outside of their fields, or merely become better, more confident communicators. Topics covered will include: what makes for an engaging live story idea; storytelling techniques such as creating a story arc, scene setting, and pacing; slide and image design for impact and engagement; and voice and presence tips to help participants feel grounded, confident and strong in front of the microphone. The workshop will include time for instruction, writing, sharing and presentations by the group.
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Panel VII.C
Breaking Bad—A ‘Borderland’ Illness Narrative
Naila V. deCruz-Dixon
Ten years ago, AMC premiered its award-winning television series, Breaking Bad, which captivated audiences and critics alike. The slow-burning crime drama follows Walter White, a high-school chemistry teacher turned drug-dealer, after his diagnosis of stage IIIA lung cancer. Set in the American Southwest, White’s anti-hero transformation inspires a range of scholarship engaging the geopolitics of race, ethnicity, masculinity, neoliberal economics, and social morality. The fact that Breaking Bad is, at its core, an illness narrative is noticeably lost within this critical discourse, and White’s experience of his body and his illness are consistently peripheral and obscured. Grounding its analysis in Arthur W. Frank’s The Wounded Storyteller, this paper defines Breaking Bad as a ‘borderland’ illness narrative as it exists within the three distinct yet overlapping fundamental illness narrative spaces: the Restitution narrative, the Chaos narrative, and the Quest narrative. Tracing different features of narrative wreckage, interruption, and memory within this topography allows us to locate problems of embodiment—control, body-relatedness, desire, and other-relatedness—within the landscape. Identifying the coordinates of White’s experience within this permeable matrix allows us to better understand why Breaking Bad and other ‘borderland’ illness narratives evade recognition and how our responsibility to respond to them is more salient than ever.
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Neoliberal Frontiers: Autism, Nationality, and the American West in Rain Man and My Name Is Khan
Kristen Loutensock
Two of the most influential and widely seen films with autistic protagonists, Rain Man (1988) and My Name is Khan (2010), set their action in the American West. In both films, it is a road trip across this physical landscape that allows the spectator access into the (imagined) mental landscape of the main characters. By figuring autism within and as part of the national landscape, these films each make clear theway that has become a stand in for the extremes of American neoliberalism. Each film portrays a journey towards a ‘proper’ American masculinity, one that fits within capitalist needs and the nuclear family structure, whilst contrasting this with the various forms of failed community and individualism that make up the imagined West. By placing these autistic characters at the heart of the road movie, these films restage the American West as a place for an individual journey into health and away from disability. More pointedly, each uses this landscape to assert the necessity of a particular type of community, one in which individual difference must be subsumed into the needs of the family unit. In this way, I argue that each presents the American landscape as a place for discarding disability and moving towards heteronormative community, at the expense of any deeper understanding of difference.
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Sleep but not Sleep: Filmic and Literary Imaginings of the Body and Mind in Coma
Ruth McCann
With the development of mechanical ventilation, it became possible to preserve human life in escalating degrees of extremis, including the comatose state. Portrayals of coma in the arts (including film, television, and literature) reflect our culture’s attempts to imagine and theorize about the environment of the comatose body and mind. This paper explores three areas of imagining within artistic portrayals of coma. The first area involves depictions of comatose women, who are often portrayed as asthetically compelling, their bodies relatively unravaged by illness (e.g. Pedro Almodovar’s “Talk to Her”), recalling Sleeping Beauty. These comatose women often find themselves at the mercy of predatory sexual desire (e.g. Quentin Tarantino’s “Kill Bill”) and other forms of exploitation (“Reversal of Fortune”). The second area of imagining involves portrayals of coma-like states in science fiction (e.g. Ridley Scott’s “Alien”), which acknowledge the coma as being in some ways a frightening, other-worldly state and explore imagined connections between coma and immortality. The third area involves artistic conceptions about what being in a coma looks and feels like. Perhaps out of discomfort with the comatose state’s adjacency to death, ventilators and feeding tubes are often conspicuously absent in artistic portrayals of coma, and comas are routinely (erroneously) depicted as sleep-like (e.g. “The 9thLife of Louis Drax”). Over the past half-century, portrayals of coma in the arts have attempted to make sense of the coma’s emerging ‘place’ in our lives, while revealing deep anxieties about what it means to be a body temporarily without a mind.
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Panel VII.D
When Private Goes Public: An International History of the Pharmaceutical Company Sponsored Nurse
Raquel Baldwinson
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How social context effects comprehension of health information
Laura Pigozzi
This paper provides a detailed look into the social context of one community of Latinx immigrants and explores the effect this social context has on comprehension of health information and the experience of medical encounters. Communication contains many complexities, with both sender and receiver operating in a variety of contexts (e.g.physical, psychological, social, relational, and cultural) to co-create meaning (Shwom & Snyder, 2019). Miscommunications and lack of comprehension occur when those communicating are “…not attending to the localized context within which health meanings are negotiated actively by cultural members” (Dutta & Jamil, 2013, p. 171). Moreover, building on notions suggested by Felt, Bister, Strassnig, and Wagner (2009), the author’s empirical data suggests individuals don’t necessarily make health decisions based on the information formally presented, but also, or even solely, based on other resources, such as their social context. A thorough understanding of social context is of vital importance to those providing health information to this community. The social context of this community is complex and dynamic. Latinx immigrants in this study live in a closely knit community, sharing a culture, language, faith, for the most part their country of origin, and the immigrant experience. These community members demonstrate care and concern for one another while living with a steady sense of disquietude surrounding the immigration status of themselves, family members, or friends. An undocumented status affects all areas of an immigrant’s life, limiting many potential opportunities. It is within this social context that community members make healthcare decisions.
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Panel VII.E
The Living God Downstream: Reproductive Justice and Relational Ontologies
Allyse Knox-Russell
In recent decades, media surrounding toxic threats to children has tended to capitalize on parent paranoia and the scandal of contaminating the ‘innocent’. Often, as Mel Chen and Nicole Seymour have separately argued, such anxiety reinforces racist, classist, and ableist stereotypes of which bodies deserve ‘purity’ and which are already ‘polluted’, as well as individualist discourses of protection within the heteronormative nuclear family. In contrast, environmental justice activists of color, for instance at Flint and Standing Rock, have recently asserted their own collective, interrelational visions of reproductive justice. In this article, I argue that an understanding of our unavoidably permeable embodiment—in the sense of both physical and metaphorical pollutants—necessarily transforms reproductive justice into a relational, rather than individualist, idea. Drawing on Stacy Alaimo’s concept of a “trans-corporeal” ethic—or the idea that we are accountable to the other bodies around us, with which we are constantly co-constituting ourselves—I trace the implications of a relational reproductive justice through readings of a variety of contemporary sources, including Eula Biss’s 2014 nonfiction memoir On Immunity, blog posts emerging from Flint and Standing Rock, and Louise Erdrich’s 2017 speculative novel, Future Home of the Living God. Far from reinforcing ideas of reproductive politics as a politics of one woman’s choice, these narratives each demonstrate the potential to convert parental concern for one’s own children into a communal concern for all bodies, with an emergent sense of one’s inevitable permeability often acting as the hinge between the individual and the collective.
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Body as Environment in Vaccination Controversy
Bernice L. Hausman
Vaccine skeptics identify numerous problems with vaccination, including changes to the body and children’s potential futures by injection with foreign proteins. Often, they suggest that illness is a good experience for healthy bodies while vaccination makes those same bodies vulnerable. Supporting the body through illness is a notable theme in these discourses. Alternatively, vaccine proponents identify concerns with circulating microbes that attack without warning and endanger the body and its health. These latter themes, often accompanied by specters of unknowable risk, are also emphasized in mass television advertising for vaccines. In these representations, bodies are vulnerable and in need of support through vaccination. This paper explores how vaccine skeptics, refusers, and proponents represent the body. Data for the paper has been collected in interviews that ask people to consider their vaccination practices in relation to views about health and wellbeing. Additional sources for interpretation include advertising, vaccine education materials, and public health programming. My purpose is to explore how representations of the body as an environment for vaccination are created and sustained in discourse, as well as how these representations include common themes that might bridge divides in current vaccination controversy. Understanding how vaccine skeptics, refusers, and proponents understand the body as environment for vaccination might hold a clue to ameliorating the stalemated public debate about vaccination. The paper is excerpted from a book on vaccination controversy that will be published in April 2019. Its approach is rhetorical and thematic, relying on close reading of interviews and other textual data.
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Migrant workers’ de jure vs de facto access to health
Shannon Guillot-Wright
The changed conditions of labor and migration in the U.S., seen most clearly in political economic policies as well as unwritten policies that migrants circumvent, effects the ways in which migrants can access their right to health. In order to understand migrant workers de jure vs de facto access to health, I conducted a photo-ethnography with Filipino migrant seafarers (men and women who live and work at sea) over the course of year. My methodology included photo voice, participant observation, and semi-structured interviews, which was grounded in critical medical humanities literature. Migrant seafarers are an understudied population group, yet contribute to the majority of U.S. global trade. However, their transient lives make them easy to be ignored or forgotten. By studying the everyday lives of a little known and little understood population, my insights lend context, critique, and provocation to national and global policy that has upheld systems and structures that produce various forms of violence. In this vein, structural and symbolic violence were studied as a way to reimagine the health worlds of migrant seafarers and to explore health prevention through the historical discourse of the distribution of power and resources instead of risk and disease. I conclude with ways to advocate for migrant workers through public photography exhibits as well as within existing medical curriculum.
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Health Humanities Consortium 