Health Humanities in Application 3031083598, 9783031083594

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Sustainable Development Goals Series

SDG: 3 Good Health and Well-Being

Health Humanities in Application Edited by Christian Riegel Katherine M. Robinson

Sustainable Development Goals Series

The Sustainable Development Goals Series is Springer Nature’s inaugural cross-imprint book series that addresses and supports the United Nations’ seventeen Sustainable Development Goals. The series fosters comprehensive research focused on these global targets and endeavours to address some of society’s greatest grand challenges. The SDGs are inherently multidisciplinary, and they bring people working across different fields together and working towards a common goal. In this spirit, the Sustainable Development Goals series is the first at Springer Nature to publish books under both the Springer and Palgrave Macmillan imprints, bringing the strengths of our imprints together. The Sustainable Development Goals Series is organized into eighteen subseries: one subseries based around each of the seventeen respective Sustainable Development Goals, and an eighteenth subseries, “Connecting the Goals,” which serves as a home for volumes addressing multiple goals or studying the SDGs as a whole. Each subseries is guided by an expert Subseries Advisor with years or decades of experience studying and addressing core components of their respective Goal. The SDG Series has a remit as broad as the SDGs themselves, and contributions are welcome from scientists, academics, policymakers, and researchers working in fields related to any of the seventeen goals. If you are interested in contributing a monograph or curated volume to the series, please contact the Publishers: Zachary Romano [Springer; zachary. [email protected]] and Rachael Ballard [Palgrave Macmillan; rachael. [email protected]].

Christian Riegel  •  Katherine M. Robinson Editors

Health Humanities in Application

Editors Christian Riegel Department of English Campion College, University of Regina Regina, SK, Canada

Katherine M. Robinson Department of Psychology Campion College, University of Regina Regina, SK, Canada

ISSN 2523-3084     ISSN 2523-3092 (electronic) Sustainable Development Goals Series ISBN 978-3-031-08359-4    ISBN 978-3-031-08360-0 (eBook) https://doi.org/10.1007/978-3-031-08360-0 © The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer Nature Switzerland AG 2023 Chapters 1 and 8 are licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/). For further details see licence information in the chapters. Color wheel and icons: Fromwww.un.org/sustainabledevelopment/, Copyright © 2020 United Nations. Used with the permission of the United Nations. The content of this publication has not been approved by the United Nations and does not reflect the views of the United Nations or its officials or Member States. This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the ­publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and ­institutional affiliations. This Palgrave Macmillan imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Acknowledgements

The editors thank the editorial staff at Palgrave Macmillan for their careful preparation of the book: Allie Troyanos, Chandralekha Mahamel Raja, Brian Halm, Imogen Higgins, and Sindhuja Aroumougame. Thanks also to Molly Beck for the initial welcome response to our query.

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Contents

1 Introduction:  What Does It Mean to Do the Health Humanities in Application?  1 Christian Riegel and Katherine M. Robinson 2 Mapping  Reproductive Health Policy Using Arts-Based Research Methods: A Model of Pedagogical Transgression 17 Angie Mejia and Danniella Balangoy 3 Black  Feminist Field Notes: On Designing an Undergraduate, Online, Health Humanities Course in Women’s and Gender Studies 43 Rachel Dudley 4 Viral  Pedagogical Narratives: Artistic Expressions of Living During the COVID-19 Pandemic 75 Karen Keifer-Boyd, Michele Mekel, and Lauren Stetz 5 Narratives  of Repair and the Re-articulation of the Pained Self: A Study in Painscapes103 Tea Gerbeza

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6 Exploring  Cultural Dance as a Medium for Improving Cross-Cultural Communication in Medicine: The Aseemkala Model123 Shilpa Darivemula, Moondil Jahan, Lindsay Winters, and Ruta Sachin Uttarkar 7 Deep  Flow: A Tentacular Worlding of Embodied Dance Practice, Knowing, and Healing153 Jeannette Ginslov 8 Interdisciplinarity,  Transdisciplinarity, and Health Humanities: Eye Tracking, Ableism, Disability, and Art Creation175 Christian Riegel and Katherine M. Robinson 9 Listen,  Play, Learn: Rethinking Expertise and Collaboration in the Field of Disability Support Services195 Myles Himmelreich and Michelle Stewart 10 Deconstructing  Disability from a Global South Perspective: Examples from an Interpretive Phenomenological Study223 Festus Yaw Moasun 11 The  Networked Human: Coronavirus, Facebook, and Indian Politics247 Rimi Nandy, Agnibha Banerjee, and Santosh Kumar 12 On  the Use of Encapsulation, Parity, and Visual Storytelling in Graphic Medicine265 Spencer Barnes 13 Medical  Progress, Health, and the Chronic Disease of Racism in Kindred: A Graphic Novel Adaptation287 Tatiana Konrad Index319

List of Figures

Fig. 4.1

Fig. 4.2

Fig. 5.1 Fig. 5.2 Fig. 5.3 Fig. 6.1 Fig. 7.1 Fig. 7.2 Fig. 7.3

Workshop participants’ curation of Viral Imaginations artworks related to food sustainability issues includes work by Isabella Del Signore (2021, top left), Anonymous (2021a, b, top middle), Elaine Lacina (2020, top right), Anonymous (2020, bottom left), Zena Tredinnick-Kirby (2020, middle), Patricia (2020, bottom middle), and Rebecca Morris (2020, bottom right) 86 Workshop participants’ curation of Viral Imaginations artworks related to hope includes work by Anne Lavo (2020, top right), Amy Frank (2020, top middle), Claudia McGill (2020, top right), Christina Fridman (2020, bottom left), Oana Bollt (2020a, middle), Oana Bollt (2020b, bottom middle), and Stella Talamo (2020, bottom right) 88 Samples of paper quilling shapes. Photograph taken by the author for the purposes of this chapter 104 “Scar” Painscapes. Scanner photograph. https://teagerbeza. com/projects/painscapes111 “Bending Over.” Painscapes. Scanner photograph. https:// teagerbeza.com/projects/painscapes114 Aseemkala traditional dance framework for patient-provider cross-­cultural understanding 134 Ginslov, J. (2017) Dancer Suet-Wan Tsang in Conspiracy Ceremony—HYPERSONIC STATES (photograph) 156 Spikol, D. (2019) Dancer Jeannette Ginslov in Deep Flow at the Symposium on Digital Urbanism, Blekinge Institute of Technology, Karlshamn, November 14, 2019 (photograph) 161 Ginslov, J. (2020) Movement hieroglyph (photograph) 164 ix

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List of Figures

Fig. 7.4 Fig. 9.1 Fig. 9.2

Fig. 9.3

Fig. 9.4

Fig. 11.1 Fig. 11.2 Fig. 12.1 Fig. 12.2 Figs. 13.1 and 13.2

Fig. 13.3

Fig. 13.4

Fig. 13.5

Fig. 13.6

Ginslov, J. (2020) Figuring-figure (photograph) 166 Myles walking through the post-it notes that captured the feedback from the youth who had participated in the improvision series. Credit: Michelle Stewart 212 Themes that emerged during the arts-based evaluation with the youth included the role of advocacy as they learned more about their disability they were better able to advocate for themselves. Credit: Michelle Stewart 213 The swirl of words around “advocacy” also traces out the ways in which self-awareness and advocacy are linked, for participants, to acceptance, hope and loving oneself. Credit: Michelle Stewart 214 Images of cups of water were references to the water activity that had different expectations and tasks for different groups of individuals and participants recalled that the individuals with an “empty cup” can face blame and punishment. Credit: Michelle Stewart 215 Facebook data demographics 256 Facebook data: political thoughts 256 Standard EIPR narrative structure 273 EEIPRR variation of standard EIPR narrative structure 276 Dana is performing cardiac massage on Rufus and giving him artificial respiration, thereby reanimating the boy (p. 13). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 295 Dana witnesses Alice’s father being whipped by a white man (p. 43). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 295 Dana is taking care of a beaten-up Rufus (p. 115). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts296 Dana is trying to save Tom Weylin when the man is having a heart attack (p. 183). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 297 The Black body in pain (p. 42). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 299

  List of Figures 

Fig. 13.7

Fig. 13.8

Fig. 13.9 Fig. 13.10

Fig. 13.11 Fig. 13.12

Fig. 13.13

Fig. 13.14 Fig. 13.15

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Dana is being whipped by Tom Weylin (p. 162). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts300 Injured Alice is returned to the plantation (p. 136). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts301 Dana finds Alice’s dead body (p. 219). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 302 Dana is caring for severely injured Alice (p. 138). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts304 Dana’s kit includes aspirin (p. 107). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 306 Dana is giving aspirin to Rufus to ease his suffering (p. 126). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 307 Dana steals a bottle of medicine to help Alice flee (p. 204). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 309 The opening image of Dana (n.p.). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 311 Dana returns home from the antebellum South for the last time (p. 234). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts 314

List of Tables

Table 3.1 Table 3.2

Week 1 Course Schedule Snapshot Reading Worksheet Example

65 67

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CHAPTER 1

Introduction: What Does It Mean to Do the Health Humanities in Application? Christian Riegel and Katherine M. Robinson

Health, Humanities, and Application Three key concepts situate the approach of this book: health, humanities, and application. Health, in health humanities, relates to all imaginable configurations of health and well-being ranging from individual health concerns to formal health, medical, and clinical contexts. The humanities pertain to “the knowledge the human species has acquired about itself over the centuries” (Aldama 2010, 1) and include conventional humanities disciplines such as literary studies, history, philosophy, and religious studies, the arts and artistic creation, and the social sciences, where they

C. Riegel (*) Department of English, Campion College, University of Regina, Regina, SK, Canada e-mail: [email protected] K. M. Robinson Department of Psychology, Campion College, University of Regina, Regina, SK, Canada e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_1

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examine the human condition, including disciplines such as anthropology, sociology, and psychology, amongst others. Multidisciplinary, interdisciplinary, and transdisciplinary modes also inform the configuration of health and humanities in domains such as disability studies, women’s and gender studies, and the study of race and ethnicity. The concept of application is a central tenet of health humanities in that they are concerned with how one does things and to what particular use one puts things, fitting with a standard dictionary definition of the word application (Cambridge English Dictionary). Health Humanities in Application is concerned with the relationship of application to health and humanities; that is, in how we do the health humanities. This interest fits well into the rapidly growing field of the health humanities, which consolidates knowledge and practice at the intersections of health and the humanities. At core, health and the humanities come together in application: it is how the humanities are used by health care practitioners, artists, individuals interested in health, caregivers, students of the health disciplines, athletes, educators, and academic researchers, amongst others, that defines the field. Health Humanities in Application underscores the need to articulate the deployments of the humanities in health contexts to understand the contours of the field and its applied concerns more fully. The shape of the health humanities is quickly coming into focus even as there is much work yet to be done to define its boundaries. Klugman sees the health humanities as “a field concerned with understanding the human condition of health and illness in order to create knowledgeable and sensitive health care providers, patients, and family caregivers” (Klugman 2017, 422), and Klugman and Lamb note that “health humanities puts the humanities, arts, and social sciences in the center, rather than as an add-on to clinical and basic science” (2019, 3). Crawford broadens the focus on “health and illness” to account for the expansive potential of the health humanities as “an evolving, game-changing field that attracts different arts and humanities traditions to work more closely with the public to advance health care, health, and well-being” (Crawford 2020, “Introduction,” 6). The origins of health humanities in relation to medical humanities are articulated by Jones, Wear, and Friedman in their essay “The Why, the What, and the How of the Medical/Health Humanities” (2014). Inherent in their configuration of “medical/health” is a tension between the purposes of the humanities and the arts in the service of medicine and medical education and the role of the humanities intersecting health and

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well-­being broadly conceived. Victoria Bates and Sam Goodman recognize this tension in their conception of the term medical humanities as malleable, making its “definition problematic and arguably unnecessary” (2014, 3). The focus in medical humanities is on the biomedical sciences and their relation to “the arts and humanities, and the social sciences” and their “intersections, exchanges and entanglements (Whitehead and Woods 2016, 1). Bates and Goodman argue that the danger of entrenching a specific set of qualities in the term medical humanities would result in “an unfortunate narrowing of the field.” Yet, the very conception of the term is rooted in the medical, which necessarily narrows the focus to largely biomedical contexts even when there is a “huge range of subjects and approaches” (2014, 5) in the medical humanities. The Edinburgh Companion to the Critical Medical Humanities, in its 36 chapters, reinforces both the breadth of the medical humanities and how they are range bound, returning always to contexts relating to medicine. Whether the interest is in narrative, literary expressions of illness, historical perspectives on matters of health, politics, culture, and society, emphasis threads to expressions of medical domains. Health and wellness are not limited to medical contexts, and indeed they supersede such a limitation given humanity’s concerns with issues such as physical fitness, mental health, the benefits of being in nature, disability, ableism, illness, and caregiving, amongst many other health-related matters that can be situated in and outside biomedical spaces. So, too, are the myriad possibilities of the humanities and the arts—and those areas of the social sciences that overlap--to expand knowledge of how we understand health as individuals, communities, and societies, how we practise in health settings, and how we implement health education for students beyond the confines of a medical education to include the breadth of domains that have an interest in matters of health. Having introduced the concept of the health humanities as a field in 2010, Crawford, Brown, Tischler, Baker, and Abrams put forward a self-described “manifesto” (Crawford “Introduction” 2020) for the health humanities in their aptly titled volume Health Humanities calling “for a new kind of debate at the intersection of the humanities and healthcare, health and well-being” (Crawford et al. 2015, 1). There was a need, they argued, “to address the increasing and broadening demand” for a health humanities approach as a way to account for “how arts and humanities knowledge and practices can inform and transform healthcare, health and well-being,” and to create space for the large cohorts of individuals engaged in health-related work

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who do not fit within the boundaries of medical humanities (Crawford et al. 2015, 1). The health humanities, they note, create space for “different disciplines … to value the contribution made by the arts and humanities” and for “new opportunities [to] emerge in health for the development and inclusion of new approaches” (Crawford et al. 2020, 1). The concept of health humanities serves as a catalyst for those interested in health and wellness to situate their intellectual, practical, and personal concerns in a manner that is “more inclusive and international” than the previously constituted medical humanities (Crawford et al. 2015, 1). Crawford remarks that health humanities is beginning to mature “as an energetic, robust, and inclusive field: one that signals a more co-created and co-operative vision for how the arts and humanities can stand as an interdisciplinary, and not solely medicalized, shadow health care service” (Crawford 2020, 6; see also Banner 2019, 2). The present book is born out of the observation that the tension articulated in the hybrid “medical/health humanities” conception of how health and humanities fit together (Jones et al. 2014, 1) has dissipated quickly as the field of health humanities has become entrenched in a process of formation that is ever expansive, including exceptional growth in baccalaureate programmes (Klugman and Jones 2021) and in graduate and research institute or centre growth (Crawford 2020). Klugman and Lamb note that the term “health humanities does not replace nor compete with the medical humanities” (Klugman and Lamb 2019, 3). Researchers, educators, students, health professionals and practitioners, creators, and members of the community recognize their interest in health and its intersection with humanities rather than seeing their approach be excluded by the boundaries of medicine. This is an important development that predicts an ever-growing field. Olivia Banner highlights the diversity of approaches in their discussion of health humanities educators, describing them as “a diverse group of bricoleurs” in their teaching and scholarship (2019, 1). Those engaged in health humanities come from a wide range of humanities disciplinary backgrounds “with divergent disciplinary and field training” (Banner 2019, 1). Jones et al. (2014) note that the health humanities arise out of a conventionally understood set of humanities disciplines, such as “history, literature, philosophy, bioethics, and comparative religion” and are augmented by a more elastic understanding of the humanities to include “those aspects of the social sciences that have humanistic content and employ humanistic methods relevant to medical inquiry and practice, particularly sociology, anthropology, and psychology” (4–5). Additionally

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influential in the health humanities are “philosophical and pedagogical projects as postmodernism, feminism, disability studies, cultural studies, media studies, and biocultures” (Jones et al. 2014, 5). The over-arching challenge, then, is to account for the breadth of the field while still maintaining an understanding of what binds the immense range of interests, approaches, and practices that contribute to the intersection of health and humanities.

Situating Health Humanities: Family Resemblances The health humanities, then, are primarily understood outside the recursiveness of medical humanities to have its own vectors of development. There is still the challenge of how to capture the diversity and breadth of the field’s intellectual terrain and practical applications. This challenge is evident in the range of contributors to this book, who include physicians, creative artists engaged in dance and visual art, professors and researchers in cognitive psychology, social work, justice studies, literary studies, digital humanities, health humanities, education, pedagogy, civic engagement, media and communications, women’s and gender studies, Africana studies, art education, and bioethics. The work produced by the contributors fits simultaneously within and outside their disciplines and artistic practices further complicating how we might collectively situate the volume. And yet, health humanities as a term captures the intersection of interests despite the breadth of perspectives that are brought to bear across the individual chapters. Ludwig Wittgenstein (Wittgenstein [1953] 1967), in his book Philosophical Investigations, offers possibilities for how one might account for the expansiveness of health humanities while also recognizing that individual contributions are situated within an identifiably similar category of intellectual and practical enterprise. Wittgenstein argues that a set of family resemblances can be used to identify concepts. Writing about games, specifically, Wittgenstein remarks that we see a complicated network of similarities overlapping and criss-crossing: sometimes overall similarities, sometimes similarities of detail. 67. I can think of no better expression to characterize these similarities than “family resemblances”; for the various resemblances between the members of a family; build, features, colour of eyes, gait, temperament, etc., etc., overlap and criss-cross in the same way. And I shall say: “games” form a family (32e).

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Wittgenstein’s concept of family resemblances is useful to define the scope of health humanities as it erases the need to distinguish the medical humanities specifically from health humanities. Indeed, the medical humanities and its longer history, operating as a distinct educational, practical, and research discipline within a set of bounds defined primarily by biomedical and clinical contexts, nestle comfortably within health humanities, which serves as an umbrella field to encompass a range of similar and divergent practices and approaches, some of which are identifiable as disciplines such as narrative medicine (Charon 2006; Charon et al. 2016), and others that are situated within health humanities through their family resemblance to each other, such as disability studies, which is inherently interdisciplinary. The health humanities are thus well served by Wittgenstein’s consideration of the “complicated network of similarities” (32e) that bind together otherwise seemingly disparate domains of knowledge and application for he asks us to consider primary the points of overlap between various domains. For example, literary studies and health, and history and health: both are grounded in the disciplinary conventions of their respective disciplines and find commonality in their relevance to understanding of matters relating to health. Similarly, disability studies and the study of sexual and reproductive health policy are configured at the intersections of numerous disciplinary approaches, such as history, politics, and ethics, that find commonality when discerned in health humanities contexts. These examples sit uncomfortably in the conception of the medical humanities as it existed prior to the identification of health humanities (Crawford et al. 2010). The constraints of the medical humanities can be seen pessimistically by recognizing the “broader, more inclusive approach [of the health humanities] than the earlier designation, one that welcomes a range of health professionals even as it shifts the focus to embrace health and wellbeing” (Shapiro 2015, 268). Shapiro defines health humanities as “fuzzy” yet comfortable as a “big, admittedly at times unwieldy, tent” (Shapiro 2015, 269). To begin to conceive the family resemblances amongst the educators, practitioners, and students of health, medicine, and the humanities that fit within Shapiro’s unwieldy tent is part of the task of those who identify health humanities as the most accurate conception to account for the breadth of interest in health and humanities.

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Application and Health Humanities A key purpose of this volume is to consider application as a central family resemblance, to invoke Wittgenstein, that binds together so many disparate approaches. Whether our interest lies in pedagogy, creative production, scholarship and research, health care practice, or as students of health, medicine, the humanities, and the arts, what links us together in the field of the health humanities is what we do when we do health humanities: we engage in an application in a health domain that is deeply informed by, and implicated in, an approach defined by the humanities broadly conceived. Crawford, Brown, and Charise (2020) identify “application” as a key element of how the humanities are situated in relation to “health care, health, and well-being,” and Charise (2020) emphasizes the “pressing new reasons to consider the matter of application within” the humanities. What happens in the context of health humanities, then? Health Humanities in Application draws together scholars, physicians, educators, artists, community members, and health care practitioners with multiple global perspectives to address this question to demonstrate that the health humanities have immense reach in day-to-day practice, whatever the context, and that the boundaries of the field can be understood through the field’s work in action. This book has a distinctive shape beginning with pedagogical engagements, then moving to discussion of theoretical and artistic applications of creativity, and then shifting to considerations of health humanities related to disability and ableism, before finishing with considerations of social media and health, and graphic medicine and health. However, this is not the only way to conceive the shape of the volume as threading through the text are numerous other configurations, such as justice, technology, and communication, as they pertain to health, the nature of the health humanities, the nature of applied humanities and health work, amongst many other possible ways to link the individual chapters. This book, in particular, invites readers to engage in what can be termed an ethics of reading whereby the act of reading the chapters recognizes what R. Clifton Spargo (2004)defines as ethics, which is to see the “primordial facticity of the other. [I]t is the inevitable act and persistent fact of finding oneself in relation to the other” (7). Through engagement with considerations of health, as researchers, teachers, practitioners, or individuals otherwise interested in our own or other people’s health (as a caregiver for a family member, for example) we are constantly in

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recognition of others who exist with us in society and are thus in a form of relation to them. It is one of the roles of the humanities to help us to understand depths of this sense of relation to others, and it is the configuration of health and humanities that applies ethical dimensions to that relationship. When we encounter the health humanities in application we can situate ourselves in just such an ethical position, opening ourselves to recognition of the social, cultural, and historical complexity of health as it affects individuals and societies. Consequently, this book is constructed to bring to bear global considerations of health humanities, touching upon North American, Indian, and African contexts in addition to its other concerns. The first three chapters, following this one, of Health Humanities in Application are concerned with educational applications, focusing on postsecondary contexts within which the intersections of arts and humanities practices with health concerns prove fertile grounds with which to catalyse student interest in their own well-being as well as with that of society at large. In Chap. 2, Angie P. Mejia and Danniella Balangoy show how undergraduate health sciences students can learn about the asymmetric power structures in U.S. reproductive health policy through an applied arts-based research methodology that involves intersectional analysis. The application of intersectional theory in the classroom, they argue, serves to challenge invisible privilege, as Mejia and Balangoy identify their own subject positions as “feminists of colour” to counter structures of oppressions in their institutional contexts. Intersectional analysis is conjoined with performance and reflective writing in the classroom as an arts-based research process. Students were engaged in in-class role play performance and writing relating to state-based reproductive and sexual health legislation that is restrictive that lead to learning relating to reproductive health, rights, and justice, which is critical to training effective health practitioners. Working also from a perspective grounded in intersectional feminism and health justice, Rachel Dudley in Chap. 3 demonstrates that a feminist health humanities approach offers applied opportunities to develop impactful new courses in the health humanities. Knowledge of the development of Dudley’s course, Feminist Health Humanities, shows how the health humanities can serve a vital role in bringing awareness to students of privilege, power, and oppression as they relate to social structures that impact health and medicine. A key experience of developing the course is recognition of how inseparable issues of health are from social and political factors relating to oppression and inequality. The health humanities

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serve as application for the development of a new course that challenges assumptions about health and justice, as well as they serve as tools in the classroom setting. The health humanities also serve applied purposes as a response to the COVID-19 pandemic in designing pedagogical approaches to help students cope with the disruption of the pandemic. Health humanities, art education, and bioethics are brought together by Karen Kiefer-Boyd, Michele Mekel, and Lauren Stetz in Chap. 4. Their chapter outlines the role of an online platform, Viral Imaginations: COVID-19, that elicited creative writing and visual art from Pennsylvanians to understand their coping during the early period of the pandemic. Viral Imaginations serves, in part, as an archive of collected creative works that can be implemented in K-16 classrooms to help offset the challenges of remote learning and isolation in the age of the coronavirus. A series of pedagogical interventions, theorizations, and discussions form the focus of the chapter to articulate how creative practice and the engagement with creativity focus attention on understanding our humanity amidst a health crisis. Viral Imaginations, as online forum extended into classroom practice, underscores the need to share and engage with others as a means of coping. The understanding of application shifts to the purposes of creating art in the three chapters that follow, beginning with artist, poet, and academic Tea Gerbeza’s autobiographical examination of the challenges of social definitions of disability as they intersect the experience of living in our own bodies in Chap. 5. Gerbeza outlines the theoretical perspectives on ableism and disability that inform their artistic practice. The creation of art is simultaneously exploration of the self and its relation to disability and serves as a form of ethics through which those who view the art are able to reflect upon the challenges of ableism as a set of discriminatory practices. Gerbeza creates multimedia art, working with paper and a scanner to create paper-quilled designs that reflect their experience of chronic pain. The chapter focuses on the nine works in the Painscapes series as they explore experiential knowledge of pain that belies medically oriented definitions of pain. “Transformation, reclamation, and restoration” are at the core of the creation of art for Gerbeza as art making involves resituating a self and body that has been medically and socially determined. Viewing Painscapes provides an ethical space that is partly aesthetic enjoyment and partly educational, and thus serves applied functions beyond the creation of the works themselves. How we understand pain, disability, ableism, and

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ourselves situated in a complex social world results from engaging in the ethical realm of Painscapes. Chapters 6 and 7 demonstrate how one can use dance to resituate the binary of the medical practitioner-patient model to a more divers and inclusive mode of understanding that places the individual at the centre of the articulation of health concerns, thus breaking down the hierarchical structures that can impede full understanding if individual health needs. Dance performance is connected to cross-cultural health communication in “Addressing Cultural Competency in Physician-Patient Communication Through Traditional Dance Exchanges.” Working in a variety of health professions and from several global locations—the United States, India, and Nepal—Shilpa Darivemula, Moondil Jahan, Lindsay Winters, and Ruta Sachin Uttarkar articulate the “Aseemkala Model” as a way to extend conventional dance movement therapy (DMT) models that primarily focus on a therapist-patient dynamic that does not account for cultural and environmental factors and that reinforces the separation of therapist and patient in clinical settings. The Aseemkala Model employs traditional dance exchanges to reconfigure incongruity in how medicine and patients interact and understand each other to allow cultural, historical, and experiential diversity to be communicated to health care providers. In “Deep Flow: A Tentacular Worlding of Embodied Dance Practice, Knowing, and Healing,” dancer and academic Jeannette Ginslov defines an embodied dance practice that has as its goal to allow for arts-based knowing and arts-­ based healing. Employing a dual approach, combining phenomenological research and phenomenological arts practice, Deep Flow is concerned with working through the lived experience. Conventional health and medical models are shifted to use one’s own body in the aim of wellness and self-­ understanding. Deep Flow is an applied practice grounded in theory. Ginslov’s discussion emphasizes application and theory by working through the methods and practice of Deep Flow to provide a guide for potential practitioners to consider. The move away from overtly clinical medical contexts is one of the hallmarks of the health humanities as they privilege not only health conceived broadly, but also the range of individuals implicated in considerations of health. One of the distinguishing features of the health humanities is the interdisciplinary and transdisciplinary dimensions of the field. Our contribution, Chap. 8, is interested in what happens when we step outside our disciplinary boundaries to address the challenge of how to create art with the eyes only. We outline a research project that takes eye tracking

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hardware and adapts it with custom software to allow individuals to create art using eye movements. As such an art practice opens possibilities for people with limited mobility given that only a single eye is needed to engage in art making, the how and why shifts to a community setting creating a transdisciplinary approach that not only supersedes disciplinary collaboration but also relies on shared definition of the research questions and research processes. Disability has often been defined against a physical norm that marginalizes individuals who do not fit within an arbitrary set of physical conditions, leading to ableist views of those deemed to be disabled. Our transdisciplinary approach shifts the locus away from a researcher-subject model to instead define the conditions of the research through collaboration. Similarly, in Chap. 9, Michelle Stewart and Myles Himmelreich present a model of research collaboration that seeks to erase the distinction between research and research subject in the discussion of a project related to Foetal Alcohol Syndrome and provision of disability support services. What happens when the fundamentals of research design are challenged by the “subjects” in researchers’ attempts to implement what they considered to be a health care solution? The notion of a community shifts to that which one becomes part of as a researcher, and the research project evolves to include collaboration as an essential part of community engagement and defines an important intersection of the health humanities and disability justice. The application becomes of interest to those with Foetal Alcohol Syndrome and other disabilities, as well as to researchers, artists, and educators. Disability sits uneasily as an opposition to a norm and researchers who shift the focus from a researcher-subject model gain added insights into how we conceive of disability and ability socially, culturally, and historically. Writing about the experience of disability in Ghana in Chap. 10, Festus Moasan examines how the concept of disability cannot be detached from time and place. Moasan outlines how disability is understood differently in the Global North, where it is largely seen through a rights-based lens, and the Global South, where medical and moral/religious models dominate. Working from a phenomenological study he conducted in Northern Ghana in Konkomba communities, Moasan uses the voices of individuals with disabilities to understand how basic citizenship rights, such as the right to work, are denied to people with disabilities. People born with a disability lead a fraught and perilous life, yet health humanities, combined with disability studies, offers the opportunity to shift the epistemology of

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disability in Ghana through a resituating of language and terminology relating to disability. Moasan follows Ikem Ifeobu’s (2020) insightful articulation of a framework within which African health humanities practices might engage “to avoid the imposition of paradigms alien to African culture, as is evident in its history” (230). While the health humanities have “consolidated an international appeal” (Ifeobu 2020, 231), it is clear that the young field is rooted in Europea and North America, which makes contributions like this chapter especially valuable in furthering dialogue about a global health humanities. The understanding of personhood in relation to COVID-19 social media political discourse in India is the focus of Chap. 11. Rimi Nandy, Agnibha Banerjee, and Santosh Kumar examine how human bodies are understood historically in relation to pandemics, focusing on the challenge of how to view diseased bodies and the volume of dead bodies that arise due to pandemics. Bruno Latour’s Actor Network Theory is combined with Gilles Deleuze and Felix Guattari’s articulation of networks as a form of rhizome to understand the complex relationship of human life to disease as a type of non-hierarchical interconnectedness. Linked to Giorgio Agamben’s concept of bios, referring to a conception of personhood as sovereign, and his concept of zoe as a kind of bare life, the effects of COVID-19 are seen to shift the place of the human from bios to zoe as the social and political needs require individuals to be subservient to the needs of public health as a whole. Using several conversations from Indian Facebook pages, the authors use a health humanities approach to examine how COVID-19 patient bodies have been politicized through a social network that is itself reflective of the social world. The closing chapters shift to applications in graphic medicine to demonstrate the varied potential of the application of comics into health care contexts. Spencer Barnes in Chap. 12 is interested in how encapsulation as a mechanism through which information is transformed in visual and text-­ based forms to create effective narratives. Visual storytelling is one way that experiential narrative of a health experience or concern can be conveyed, and social media platforms afford opportunities for such narratives to  be constructed and disseminated. Through a case study of a “small story,” such as one might find in social media, Barnes demonstrates that mixes of media (such as 360-degree video and audio narration) can be arranged using several types of narrative structure to help viewers— patients, caregivers, health care providers—gain cohesion of the health experience or concern.

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Likewise, Tatiana Konrad uses a health humanities lens to read a graphic novel and its consideration of medical progress in Chap. 13. Health humanities widens the perspective from a graphic medicine perspective to include consideration of individuals and issues beyond the medical and clinical contexts. The graphic novel Kindred: A Graphic Novel Adaptation (2017) serves as an example of how history, culture, medical progress, and racism can be understood. Racism is shown to be a disease that the United States has struggled to contain across the centuries. Reading the narrative of racism in Kindred: A Graphic Novel Adaptation as a pathography (or illness narrative), Prorokova-Konrad argues, allows the pathological nature of racism to be conveyed and reinforces the urgency with which it must be dealt with. Writing in 2010, Crawford et al. noted the boundaries of the medical humanities, remarking that “The very term ‘medical humanities’ encapsulates the dominant force in the discipline. Historically, medicine has captured the intellectual and clinical high ground” (Crawford et al. 2010, 6) and called for a new approach that would result in “an inclusive health humanities” (Crawford et al. 2010, 7). Such an inclusive field of endeavour has indeed developed rapidly as researchers, educators, students, practitioners, and members of the community, recognize the place of their inquiry, work, and practice within the space of the health humanities. As Health Humanities in Application demonstrates, the realm of the health humanities is ever expanding as they open themselves to new ways to understand the intersections of health, the arts, and the humanities. Acknowledgments  Open Access Publishing funds provided by the Office of the Vice President (Research), University of Regina, the Office of the Dean, Campion College, and the Social Sciences and Humanities Research Council of Canada.

References Aldama, Frederick Luis. 2010. Introduction: The Sciences and Humanities Matter as One. In Toward a Cognitive Theory of Narrative Acts, ed. Frederick Louis Aldama, 1–10. Austin, TX: University of Texas Press. Banner, Olivia. 2019. Introduction: For Impossible Demands. In Teaching Health Humanities, ed. Olivia Banner, Nathan Carlin, and Thomas R.  Cole, 1–15. New York: Oxford University Press. Bates, Victoria, and Sam Goodman. 2014. Critical Conversations: Establishing Dialogue in the Medical Humanities. In Medicine, Health and the Arts:

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Approaches to the Medical Humanities, ed. Victoria Bates, Alan Bleakley, and Sam Goodman, 3–13. Abingdon and New York: Routledge. Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford University Press. Charon, Rita, et  al. 2016. The Principles and Practice of Narrative Medicine. Oxford University Press. Charise, Andrea. 2020. On Applying the Arts and Humanities in Austere Times. In P. Crawford, B. Brown, A. Charise, (eds.), 18–26. The Routledge Companion to Health Humanities, Routledge. Crawford, Paul. 2020. Introduction: Global Health Humanities and the Rise of Creative Public Health. In The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian Brown, and Andrea Charise. Abingdon and New York: Routledge. Crawford, Paul, Brian Brown, Victoria Tischler, and Charley Baker. 2010. Health Humanities: The Future of Medical Humanities? Mental Health Review Journal 15 (3): 4–10. https://doi.org/10.5042/mhrj.2010.0654. Crawford, Paul, Brian Brown, Charley Baker, Victoria Tischler, and Brian Abrams, eds. 2015. Health Humanities. Basingstoke: Palgrave Macmillan. Crawford, Paul, Brian Brown, and Andrea Charise, eds. 2020. The Routledge Companion to Health Humanities. Routledge. Clifton Spargo, R. 2004. The Ethics of Mourning: Grief and Responsibility in Elegiac Literature. The Johns Hopkins University Press. Ifeobu, Ikem. 2020. Imaginations of Health Humanities in African Contexts. In P. Crawford, B. Brown & A. Charise eds., 230–235. The Routledge Companion to Health Humanities, Routledge. Jones, Therese, Delese Wear, and Lester D. Friedman. 2014. Health Humanities Reader. New Brunswick and London: Rutgers University Press. Klugman, C.M. 2017. How Health Humanities will save the life of the humanities. Journal of Medical Humanities 38(4): 419–430. https://doi. org/10.1007/s10912-­017-­9453-­5. Klugman, Craig M., and Erin Gentry Lamb. 2019. Introduction: Raising Health Humanities. In Research Methods in Health Humanities, ed. Craig M. Klugman and Erin Gentry Lamb, 1–14. New York: Oxford University Press. Klugman, C.M., and T. Jones. 2021. To Be or Not: A Brief History of the Health Humanities Consortium. Journal of Medical Humanities 42: 515–522. https:// doi.org/10.1007/s10912-­021-­09712-­3. Shapiro, Johanna. 2015. Health Humanities and Its Satisfactions. In Humanitas: Readings in the Development of the Medical Humanities, ed. Brian Dolan, 268–273. San Francisco: University of California Medical Humanities Press. Whitehead, Anne, and Angela Woods. 2016. Introduction. In The Edinburgh Companion to the Critical Medical Humanities, ed. Anne Whitehead and Angela Woods, 1–31. Edinburgh: Edinburgh University Press. Wittgenstein, Ludwig. (1953) 1967. Philosophical Investigations. Translated by G. E. M. Anscombe. Third. Oxford: Basil Blackwell.

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Christian Riegel  is Professor of Health Humanities and English at Campion College, University of Regina, Saskatchewan, Canada. He is a Fellow of the Royal Society for the Arts (FRSA) in the United Kingdom. Amongst his books are Writing Grief: Margaret Laurence and the Work of Mourning, Response to Death: The Literary Work of Mourning, and Twenty-­First Century Canadian Writers. He is coordinator of the Certificate programme in Health and Medical Humanities at the University of Regina. Katherine M.  Robinson  is Professor of Psychology at Campion College, University of Regina, and Graduate Chair of the Experimental and Applied Psychology programme, University of Regina, Saskatchewan, Canada. She is a Fellow of the Royal Society for the Arts (FRSA) in the United Kingdom. She specializes in mathematical cognition, the psychology of evil, and eye tracker computer game design for data collection. She recently published Mathematical Learning and Cognition in Early Childhood Education: Integrating Interdisciplinary Research into Practice.

Open Access     This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made. The images or other third party material in this chapter are included in the chapter’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

CHAPTER 2

Mapping Reproductive Health Policy Using Arts-Based Research Methods: A Model of Pedagogical Transgression Angie Mejia and Danniella Balangoy

Introduction This chapter engages with “the magic of health humanities” (Crawford 2020, 3) with an applied approach that merges arts-based research methods and intersectional analysis to introduce undergraduate health sciences students to the asymmetric power relations of U.S. reproductive health policy. We affirm our commitment to what Charise termed the urgent task of an applied health humanities praxis “infused with advocacy and alive to activism” (2020, 25) to respond to the effects of neoliberalism on the health and wellbeing of underserved populations. We concur with recent A. Mejia (*) Center of Learning Innovation, University of Minnesota Rochester, Rochester, MN, USA e-mail: [email protected] D. Balangoy Farmington, MN, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_2

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scholarly work that asserts a need to critically assess how the health humanities might be apolitically applied in clinical education to meet the marketdriven demands of healthcare institutions (Diedrich 2015; Fletcher and Piemonte 2017; Charise 2020). By remaining vigilant about how we do health humanities, we can more easily “talk back” (hooks 1989) and intervene in practices and systems that marginalize subaltern groups’ health conocimientos (wisdom and knowledge) and mute their transformative potential. We enter this conversation with a pedagogical process that challenges university undergraduate students and others to critically examine the role of U.S. reproductive health policy as a driver of inequities that impact how health professionals engage in the clinical encounter. The use of qualitative methods in health sciences and STEM (Science, Technology, Engineering, and Mathematics) classrooms has been referred to as a “transgressive practice” (Hsiung 2016). We, as Women of Colour (WoC) teaching (Mejia) and learning (Balangoy) at a Predominantly White Institution (PWI) in the Midwestern United States, are also coded as transgressors and trespassers. PWIs, institutions where Anglo Whites make up over 50% of the student body (Von Robertson et al. 2016) and whose practices, policies, and institutional ideologies have been shaped by and entrenched in a legacy of racial segregation and exclusion (Allen 1985; Hurtado 1992; Smedley et al. 1993; Apugo 2019), are in urgent need for humanities-based and critically liberatory-inspired pedagogies that apply an intersectional lens and praxis. Introducing controversial topics in academic settings is not always fruitful as “[i]t takes time for students to deal with all the assaults on their ways of perceiving the world” (Bickford et al. 2001, 92). However, the pedagogical use of performative research methods might allow for the exploration of power, domination, and their intersectional oppressions in accessible and transformative ways, for both audience and learner (Cabaniss 2016; Tintiangco-Cubales et al. 2016). This chapter presents a model and a qualitative analysis of an applied health humanities assignment that used arts-based methods to introduce health sciences undergraduates to the intersectional barriers connected to reproductive health policy in the United States. We begin by outlining the concepts driving our pedagogy as well as our analysis (intersectionality, arts-based methods, performativity) and summary of key literature on U.S. health providers’ knowledge about reproductive health policy. Then, we go on to describe the assignment in more detail before delving into our qualitative analysis of students’ written reflections on dramatizing the intersectional consequences of restrictive reproductive health policy. We

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close this chapter with a reflection on this health humanities assignment’s limitations when exploring controversial issues in the classroom.

Literature Review Intersectionality Intersectionality emerged from the work of Black feminist scholars (Crenshaw 1990; Collins 2002; Combahee River Collective 2014) and other Women of Colour thinkers, activists, and academics (Lugones 1987; Hurtado 1989; Sandoval 1998; Moraga and Anzaldúa 2015). This concept illustrates how socio-political markers of identity (race, gender, class, ability, nationality, sexual desire, language, among others) and systems of domination, power, and differentiation (such as racism, sexism, classism, ableism, ethnocentrism, and others) work in complex and mutually constitutive ways (Crenshaw 1990; Collins 2002) to shape and solidify inequities. Expanding upon the theoretical and methodological possibilities of intersectionality, Patricia Hill Collins (2002) proposed a sociological and feminist-informed analytical framework to understand these complex and mutually constitutive dynamics. Calling it a Matrix of Domination, Hill Collins argues that power and domination operate at four dimensions to organize social life: structural, disciplinary, hegemonic, and interpersonal domains of power. Within the structural domain, power operates via laws, legislations, and other larger, more abstract tools of power to organize social oppression. Hill Collins sees the disciplinary domain as managing oppression via institutional formations, such as schools, health systems, workplaces, and other organizations, including governmental ones. The hegemonic domain is connected to the power of culture, ideas, and social norms to perpetuate oppression by normalizing untrue and damaging narratives about minoritized groups. The interpersonal domain within this framework examines the power of everyday relations between people to sustain and perpetuate the status quo. Scholars have noted various challenges when teaching intersectionality while proposing interventions in classrooms and other learning contexts. A full discussion of these challenges and strategies developed to teach intersectionality as an analytical framework is not the focus of this chapter. However, we wish to highlight our commitment to meeting these provocations by emphasizing Kim Case’s (2016) powerful words on the necessity of intersectional teaching in the classroom of today:

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Without intersectional theory applied in the classroom, educational spaces serve to both perpetuate invisible privilege by focusing on personal oppression and construct only mythical norms as worthy of earning valuable real estate within course materials and broader curricular designs (Case 2016, 2). Thus, the pedagogical model and analysis of learners’ writing and other data presented here is our intervention as Feminists of Colour to make visible those mechanisms of power and domination within our institutional contexts (Mejia, in the classroom; Balangoy, in the clinical learning space) and to act upon them. Arts-Based Research We use the term arts-based research (ABR) to conceptualize the integration of the arts and research as a dynamic “process of inquiry whereby the researcher alone or with others, engages the making of art as a primary mode of inquiry” (McNiff 2019, 24, as cited in McNiff, 2014, pp. 59, emphasis in the original.) Practices under the umbrella of ABR act as “methodological tools used by research across the disciplines during any or all phases of research” (Leavy 2019, 4). By performance, we mean the way “research is presented … for others” (Gergen and Gergen 2019, 54, emphasis in the original). This definition takes into account the audience, what the researchers wish to communicate to said audience, the researchers’ rationale in using the performance approach to share research findings, and the myriad of ways audiences may respond or react to the knowledge communicated via the performance (de Carvalho Filho et  al. 2020; Saypol et al. 2015; Shapiro and Hunt 2003). Performance as a Pedagogical Tool When reflecting on the use of performance as a pedagogical tool with healthcare professionals, Nelles and others suggest that “[t]heater and medicine have commonalities where human bodies are relational sites of practice, knowledge, and complex content” (2018, 14). The application of humanities-based pedagogical approaches via mediums of artistic expression allows learners to reflect on “ethics, ambiguity, and complex topics that can be difficult to talk about abstractly [while] expos[ing] [them] to themes they may not feel comfortable with and provide a safer space to investigate these themes” (Nelles et al. 2018, 180). Thus, it is no surprise that educators have found the pedagogical value of performativity

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when teaching future healthcare providers. Kumagai et  al. (2007), for example, highlight how the use of theatre in the classroom allows instructors to engage in productive discussions around race, ethnicity, gender, and other dimensions of difference and power as related to healthcare. Rizk et al. (2020) show how performance as a teaching tool can help students examine challenging clinical encounters. Rapisarda et  al. (2011) demonstrated how role-playing in the classroom positioned graduate-level counselling students to realize that working with diverse clients requires additional sets of knowledge, training, and a significant change in professional disposition. The activity divested them from the assumption that multicultural counselling was a mere “understanding of the basic facts about a client’s culture” (Rapisarda et al. 2011, 372) and inspired appreciation for the additional levels of training needed to serve diverse clients. Reproductive Health, Rights, and Justice When designing learning classroom exercises that incorporated intersectional analysis and employed performance and reflective writing, we were operating from research findings that suggest U.S. adults have limited knowledge on topics related to reproductive and sexual health (Kavanaugh et al. 2013), including abortion (Bessett et al. 2015), and state laws on reproductive and sexual health (Swartz et al. 2020). We were also aware of our campus’s location in a tends to be politically conservative area of Minnesota. Research has shown that religious students in allied health (Papaharitou et al. 2008), medicine (McKelvey et al. 1999; Bennett et al. 2018), and nursing (Marshall et al. 1994) are more likely to hold negative attitudes towards controversial issues of sexuality than their secular counterparts. Providers with rigid attitudes towards sexuality have been shown to feel less comfortable discussing sexual health issues with their patients (Tsimtsiou et al. 2006). In addition, we took into consideration how learners might be unaware of the complexities between state and federal reproductive health laws. Research suggests that even medical professionals working in reproductive health have gaps in their knowledge about U.S. health policies and how these affect their day-to-day professional lives. For example, Dodge et al.’s (2013) analysis found that reproductive health providers were knowledgeable on some, but not all, restrictive laws in their state. In this particular study, providers were well-informed about the different types of healthcare coverage available for abortion services and spousal permission

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guidelines (Dodge et al. 2013). However, they were less confident in their knowledge of parental notification and consent laws when a minor needs an abortion and guidelines around state-mandated counselling before terminating a pregnancy (Dodge et al. 2013). Finally, we were guided by Ludlow’s argument (2008) on how reproductive health experiences, such as abortion, are complex and multifaceted issues that “extend beyond the limits of the [abortion] debate and thus simultaneously embody “pro-life” and “pro-choice” values” (2008, 32). Thus, the use of performance and reflection to educate audiences on the real-life consequences of restrictive policy on historically oppressed and institutionally underserved people would not position learners for right versus wrong conversations. Instead, the focus would be on understanding these laws’ socio-political outcomes on groups of people they may soon interact with as health professionals.

Context and Overview of the Learning Activity This chapter’s authors are an assistant professor and a student who recently completed an degree. Both write from their positions as Women of Colour teaching and learning at a small campus connected to a larger public university system in the Midwest. As of 2021, the campus serves around 600 students; 40% of these identify as Students of Colour. This campus is also connected to the Mayo Clinic and our practices as teaching and learning scholars are known for innovative approaches to learning and teaching from its health sciences faculty. The learning activity is a two-part assignment, consisting of an in-class performance and a written research portfolio, which was carried out within the context of Community Collaborative, an upper-division community-­ engaged learning course offered year-round at our institution. Community Collaborative introduces students in their last year of undergraduate studies to participatory and other qualitative research methods to explore community health topics. The course also has a community-engaged learning component that pairs students with organizations and agencies for service-learning projects ranging from volunteering directly with agency clients to working on long-term projects, including research using participatory and arts-based methods.

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The Assignment: Performance and Written Portfolio The assignment is divided into two parts, an in-class role-play, and a written research portfolio, and is worth 10% of the class’s total grade. Students start by participating in the in-class performance during the second half of the semester and have until the end of term to complete a research portfolio consisting of two written memos (one reflective, one analytical) and two dramatic scenes (with accompanying instructions for performers and post-performance discussion questions for audience participation). In-Class Role-Play The students will spend the whole session creating a role-play performance using briefs developed by the Guttmacher Institute, a policy research organization focused on advocating for reproductive health rights in the United States and transnationally. These short summaries outline important points and policy analyses on specific pieces of restrictive state-based reproductive and sexual health legislation. Groups of four to six learners are given a brief and asked to spend 20 minutes creating a dramatic scene that portrays the real-life consequences for institutionally underserved and marginalized individuals. The scene is meant to prime the audience (often their peers and future colleagues) to reflect on the many barriers that engender unequal health outcomes for different groups of people. Collective discussion follows each performance. This exercise spans two class sessions to give each group plenty of time to perform and lead the conversation. Written Portfolio This part of the assignment requires students to individually research two pieces of restrictive state-based reproductive and sexual health legislation. To receive full points, the portfolio must include two written dramatic scenes depicting the real-life consequences of said policies on marginalized individuals. These scenes should be accompanied with instructions for the facilitator and the performers and a list of questions for a post-­performance audience discussion. The portfolio also contains a 500-word memo outlining the researching and writing of the dramatic scenes and a 500-word reflection exploring the student’s emotional responses and reactions. Students could also integrate another artistic medium into the

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assignment. While this was optional, a few undergraduates chose to submit short stories, poems, drawings, photo-essays, video animations, or artistic mixed media collages. Most of the students enrolled have already taken a sociology class or public health elective (or both) and been introduced to intersectionality. However, the first author spent two class sessions focusing on intersectionality as both a concept and an analytical approach to map out health and other social inequities. The assignment not only asks students to map the different reproductive health outcomes associated with various minoritized groups but requires them to demonstrate knowledge of the dimensions of power within Hill Collins’ framework to show an understanding of reproductive health inequities within institutional, cultural, interpersonal, and structural contexts. Since the assignment incorporates discussions about the potentially controversial topic of abortion, students are sent an email about the details in advance. Students are informed that they will not be asked to share their views on sexuality or reproductive health. Instead, we will ask them to engage in a group-based, in-class exercise tied into a more extensive written portfolio to learn how health services researchers communicate findings in novel ways and further engage in an intersectional analysis of health inequities. Those students uncomfortable with abortion would be given the choice of using legislation pieces that did not include it. For example, they could be assigned summaries outlining laws like Kentucky’s 2018 Senate Bill 71, which mandates schools to implement an abstinence-only curriculum when providing sexual education to K-12 students.

Methods We conducted a thematic qualitative analysis of the students’ written reflections and our observational classroom notes. Reading through these assignments, we began by creating a set of initial codes to find patterns and common themes. By codes and coding, we mean textual data (via words and phrases) being “symbolically assign[ed] a summative, salient, essence-capturing, and/or evocative attribute” (Saldaña 2021, 3). As qualitative researchers, we created initial codes from reading the academic literature on health providers’ reproductive health knowledge and perspectives, scholarship of teaching and learning in reproductive and sexual health in the post-secondary classroom as well as those that “jumped out” during our first reading (Seidman 2006). (For example, some of these

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codes focused on students’ pre- and post-sources of reproductive health knowledge, while others centred on their sources of knowledge.) As a second step in qualitative analysis, these codes were then grouped into categories, which allowed us to add, adjust, merge, or eliminate some. Using this initial set of codes and categories, we went back and individually coded all of the reflections to assure the reliability of our coding structure. We met again to code the rest of the writings using the qualitative research software package Atlas.ti. The categorization process led to our interpretation of the salient themes, which we expand upon in the findings section. The paper was also read by two alumnae who had completed the assignment to ensure the trustworthiness of our analysis. Due to our campus’s small size and how recent the exercise’s implementation was, we do not identify the students by their preferred gender pronouns. Instead, we use the plural “they” and limit the use of other descriptors when using quotes or segments of their written work. This is under a campus-wide Institutional Review Board (IRB) human subjects research protocol covering analyses of students’ written assignments and other data collected via teaching and learning products of coursework. Students are given the opportunity to opt out of having their classroom work being used in research studies.

Findings In addition to introducing methodological processes of reflexivity, data collection, and dissemination (Lapum 2019) facilitated by an arts-based exploration of controversial and difficult to discuss topics in the health sciences, we found the assignment impacted students in various other ways. The in-class exercise encouraged more productive conversations around socially polarizing reproductive justice topics. Both the in-class role-play and the written assignments helped students understand U.S. state-based and federal reproductive health policy as related to their career aspirations. Our analysis also demonstrated how the in-class exercise and the written portfolio helped students more confidently distinguish the analytical dimensions of intersectionality theory. We use presentative excerpts from the students’ written reflections and ethnographic notes to illustrate these findings. Our findings suggest many students became more aware of state law’s complexities when forced to analyse the many social implications for those living in more restrictive states. Their knowledge of a specific reproductive

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health legislative practice might have consisted of what a law prevented or allowed a health provider to do or not do. After reading texts looking at the intersectional barriers, some students might have even begun understanding the underlying ideological substrates of particular reproductive health laws as connected to the political players creating and supporting them. However, as the individual below states, they did not imagine how norms and personal perspectives around reproductive and sexual health practices would impact a provider’s duty of care: Prior to this exercise, I hadn’t thought about how much these policies could influence patients, simply because I didn’t really know about these policies. I knew that for myself, I had to have permission to be seen by a doctor from my mom when I was a minor, though I hadn’t thought too much about what would happen if someone couldn’t get permission… I was aware that some doctors do not perform abortions, but I had never thought to think about why this was. It honestly had not even occurred to me that this was for personal reasons that they would do this. I think this activity was very eye opening for me.

The student above also chose to create a dramatic scene based on Tennessee’s Senate Bill 1556, a 2016 legislation that offers protections to mental health therapists who decide not to serve clients whose lifestyles and identities conflict with their own “sincerely held principles” (Grzanka et  al. 2020). Like others who selected similar legislative examples, they were also unaware of the extent to which medical providers’ ideological stances could affect the care they provide and the way policies in place protect care decisions based on moral or religious grounds. “If the law protects such behavior,” one student stated during class discussions, “then it can only mean that [the behaviour] is more widespread.” Many students nodded in agreement with their peers. Two students even stayed a few minutes after class to ask us for help in making sense of “how this [provider’s moral stances protected by policy] be allowed to happen.” The assignment also forced students to see how restrictive state laws could bear upon their specific career trajectories. One student chose several bills affecting dispensing of medications used for pregnancy termination. Below, they expand upon how legislative efforts to restrict access to abortion would affect how they went about their job duties: The Idaho law is especially interesting to me since I work in a pharmacy:

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Some of the medications that are routinely used for abortions have other uses such as treatment of miscarriages and chemotherapy. Requiring pharmacies to complete additional paperwork for these medications would be very difficult to do. Additionally, not all physicians include their reasoning or diagnosis for prescriptions so the pharmacist would have to call every physician they receive a prescription from taking more time from both the pharmacist and physician.

Several undergraduates work part time as healthcare technicians, nursing assistants, or patient care associates to supplement their income or gain experience. Like the student above, many focused on how these laws would affect how they went about their duties, even when they were not planning to provide reproductive health services as part of their future obligations. The exercise made students consider the difficulty of doing their work in environments where state laws “seem to be made complex almost on purpose,” subjecting those working with patients “to a host of problems that have nothing to do with providing health care.” For some, the in-class dramatization, and the development of written scenes made them worry about how uninformed they were about state laws that could affect more than their career. Below, a student reflects on how the assignment urged them to think more deeply about how health policy affected them personally and professionally: Being in a school where all my peers are pursuing a career in healthcare and science, I think that it is important to get an understanding of what the world we are stepping into. I think that many of us cruise by our educational career and don’t think about how policy changes can have an impact on the careers we are pursuing. … [P]olicy changes impact not only our careers but also our lives.

During our analysis of the written work and assessing of other class products not connected to this exercise, we noticed some students developing a deeper understanding of intersectionality theory regarding the differences between interpersonal and structural effects of oppression, domination, and power. We use a segment from Mejia’s ethnographic notes on an encounter outside class (below) to demonstrate how a student verbalized her understanding of the analytical dimensions of Hill Collins’ Matrix of Domination:

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S was excited to tell me that they finally “got” the “whole matrix thing.” “What helped?” I asked. “Getting into the roles!” I remember this student’s performance as the scared high schooler seeking permission from the courts to get an abortion. They said that the dramatization and then writing other scenes helped them think of how “the law affects the clinic and then all of the people involved.” They remarked that the exercise made it much easier to realize how “a hospital worker, the place where they work in, and the people they care for are all connected to laws.” When legislation eventually passes, they continued, it forces a “clinic to change how one goes about patient care” even when “the people working there are not necessarily trying to be racist.” I remarked that they got it; “it” meaning the chapter in Patricia Hill Collins’s Black Feminist Thought, which some of my students experienced as a moderately difficult read. (Field notes, 10 November 2019)

S demonstrates her understanding of three dimensions in Collins’ framework—structural, disciplinary, and interpersonal—and how these interact to create a unique experience of oppression. Just like S, students stated that the in-class dramatic role-play (“getting into the roles”) and subsequently researching and developing dramatic scenes with different audiences in mind, allowed them to come back to Patricia Hill Collins’ concept of power as present structurally (via legislation), within institutional formations (via hospitals and clinics) culturally, and during interpersonal encounters. The combinations of in-class performance and reflective written exercises allowed individuals to develop a deeper understanding of how restrictive reproductive and sexual health legislation was more detrimental to racially and ethnically minoritized populations. The student below provides examples of how these laws operate to limit access to adequate reproductive healthcare for members of racial/ethnic marginalized communities in these states. [P]olicymakers know that these populations will not have the money to pay for an abortion out of pocket or two separate appointments with the time to do so. This is a direct target towards these populations and is just one of the racist acts of many within the laws set in place within our country. Aside from pushing students to reflect on the blatant racism behind these laws, the performance and written assignment allowed students to map out the mechanics of this legislation on the ground. Just like the student above, others spoke of the additional burdens, whether emotional or material, connected to the implementation of restrictive reproductive health legislation.

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This was evident after mapping out the inadequate care or lack of access for someone living in a specific state.

Though some students stated holding more conservative stances on abortion, in the end, they reflected that the experience helped them be more conscious of how laws affect others with different views: Even if you are pro-life, it’s still important to know the laws that contradict your beliefs. I didn’t know about the situation specific law being passed in Wisconsin, but I knew that it was an option available. This is something that everyone should know so that they can know the rights they have in their state. It’s easy to state your opinion without much thought after reading a passage about a certain issue, but it’s so different if you can actually experience the feelings and emotions that are involved. As for me, someone who has a certain set of rules and values that I was raised with, I have always had strong opinions about issues like abortion and other issues. But using drama to present the reality of not being able to decide what to do with your own body is indeed terrifying and … [makes it] clearer to the audience what the issue looks in real life and how serious it can get sometimes. Also, you can try to picture yourself in place of the actors and decide what would you have done if you were that person and this was all real.

Finally, students indicated that using a sociodrama approach, due to performance’s ability to both communicate and evoke an emotional reaction from others, might be a more productive way to deliver health information. As one student indicated, “these topics… although uncomfortable to discuss with others…” might be best delivered using “drama or drama with personal experience,” rather than just delivering the same information via “a pamphlet that the patient is not going to want to read…”.

Choosing to Not Choose, or Bravely Choosing to Stay: Opt-Outs and Outliers Using arts-based methods as pedagogical tools to explore controversial topics, when carefully developed and implemented, may be beneficial to most learners, even those who show initial hesitancy or resistance to either the subject (reproductive health inequities) or the method (humanitiesbased approaches.) The majority in this class took a chance by engaging in performance, reflection, and praxis to take a deeper look at health

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inequalities connected to restrictive U.S. reproductive health policies. However, we would be remiss not to discuss those few students that decided to opt out of the assignment and those who probably did not find value in the learning activity. Opt-Outs: The Choice Not to Engage with a Pro-Choice Topic From 83 students enrolled in both semesters (Fall 2019 and Spring 2020,) excluding those that did not give a specific reason for being absent or who failed to turn in the written assignment, nine students opted out from participating. Some claimed to feel “uncomfortable with the topics discussed,” shared how the exercise “did not align with [their] faith,” or perceived the assignment as “biased” against “conservative students.” These students agreed to complete the alternative assignment and write a 1500-word paper focusing on U.S. policy not connected to reproductive or sexual health inequities. Some of the students that opted out from the in-class performance, or the written reflection were also resistant to using an intersectional lens when exploring issues affecting the overall health of racially minoritized groups. One indicated feeling like the class was “all about racism and nothing else.” Another student expressed that the exercise was not created with people “who do not see race in everything” in mind. Another indicated not “understanding the importance of this assignment” since students had “already talked about racism.” While there is no way that we can connect these undergraduates to the first author’s negative end-of-term evaluations, some of those ratings did refer to this exercise (as well as others that looked at intersectional barriers of healthcare) as not beneficial and as “biased” or “too political.” Most of the written reflections showed that engaging in the performance exercise and completing the research portfolio gave students a more nuanced understanding of how state laws affect people’s ability to get adequate reproductive healthcare in the United States, especially along intersectional lines. As previously highlighted, even those claiming “pro-­ life views” found value in using performance, intersectional analysis, and autoethnographic reflection. They engaged in meaningful acts of perspective-­taking when mapping out the effects of restrictive reproductive health policies on marginalized individuals and groups. However, a small number of students showed resistance to exploring intersectional issues in light of state-level reproductive health laws. One completely

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removed the issue of racism and focused on developing scenes with very unclear roles and outcomes. Their written reflection argued that “race is not really an issue here, since it is an insurance issue” when referring to Wisconsin’s legislation restricting state employees’ insurance coverage for abortion services. “Being Brave:” Focusing on the Pros of “Pro-Life” Unlike the rest of the class (excluding those who opted out) who used their scenes to explore issues of reproductive oppression along intersectional lines, one student chose to use the assignment as a way to further reflect on their “pro-life beliefs,” in general, and their ideological stance on foetal personhood, in particular. Additionally, this student’s written scenes did not explore the intersectional barriers nor expand upon “the real-life consequences” of these laws on historically marginalized individuals. Instead, their reflection emphasized and argued for the “positives” of restrictive reproductive health policies: I chose the South Dakota law about the language of abortion, naming the fetus as a human being, as I thought that it was very powerful. It seems that this was in place to illicite [sic] a response in the patients being seen. I think by having it be mandatory, would create more thought when in an abortion situation. It personally doesn’t seem right to me that it takes language for people to see that a fetus or baby is a human being or an eventual person, but that is my own opinion. I think both policies can have massive effects on those seeking these types of care, possibly negatively emotionally, but I think one could argue that a decision that would alter a women’s [sic] life and the potential life of another person, is massive in itself. In my scenes, I was trying to show why these laws might have been planned or been supported. I wanted to shed light on the positive side of them, rather than just a negative. … The language of the abortion scene was meant to show how powerful the language of the policy is. I thought that it was important for a person going through with an abortion to hear the language of the fetus as a human being and living person.

This student’s choice of “naming the fetus as a human being” and focus on how the legislation works to emotionally influence a person seeking an abortion exemplifies scholarly work on the power of restrictive abortion laws in the United States. Ludlow, for example, argues that the language used in these policies creates and solidifies “a discursive separation of a

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foetus from the body that must sustain it… [where] the fetus becomes the person (patient) and the pregnant woman becomes a ‘body’” (Ludlow 2008, 33). In the case of this future health professional, “the positive side” of this particular law is connected to its moral power to dissuade (and if we read more into their written reflection, to discipline) an already distressed patient from asking for health services. Thus, the student that developed this sociodrama scenario helped us envision how a small but nevertheless influential group of future professionals may use the discursive force of restrictive reproductive health law during their clinical interactions.

Discussion This chapter outlines an applied health humanities pedagogical model about reproductive oppression via restrictive state laws in the United States for health sciences undergraduates. Initially designed by the first author to introduce how non-mainstream qualitative research approaches are used to communicate health inequities and policy topics to others, this activity positioned students to apply an intersectional analysis to another inquiry area, the reproductive and sexual health arena. We believe this applied health humanities exercise can help meet the needs of undergraduates and engage other groups of health and medical professionals in transformative conversations about controversial or complex topics. For example, Jones (2001) demonstrates the value of using sociodrama to nurture a space for providers “to recognize issues based on their own clinical and personal experience,” which in turn might help them develop new ways to deliver care (Jones 2001, 390). An analysis of students’ written reflections on writing and performing dramatic scenes for an audience, classroom observation notes, and students’ written artefacts showed how using performance, reflection, and other forms of artistic expression benefitted learners in additional ways. First, it allowed undergraduates the opportunity to engage in a discussion of a controversial topic without devolving into an either-or conversation. Second, it helped focus on the effects of policy on their future careers by assisting them to see the differences between state and federal laws and their impact on racialized communities. Third, it provided students with an exercise to explore intersectional barriers to health and how these barriers look when taking contexts of power and domination into account. Finally, it positioned students to wrestle with the complex relationship

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between ideology and U.S. state law pertaining to health inequities at the interpersonal level of power. The use of performance and other arts-based pedagogical tools to explore reproductive oppression at the structural level allowed students to visualize difficult situations that they might encounter as providers at the interpersonal level. As Lake et  al. (2015) indicate, “utilising the arts to provide a vehicle for critique of the dominant paradigms in medicine offers a route to engagement and professional agency” (2015, 770) for future healthcare professionals. Many of the assignments in this class illuminated how the praxis at the intersections of dramatic performance and reflective writing made students contemplate the additional consequences of restrictive reproductive health laws on their future professions, even when some stated that they were not likely to find themselves working directly with patients needing reproductive health services. For many of the students, thinking intersectionally, developing, and performing dramatic scenes depicting experiences under restrictive state reproductive health policies put them in a state of cognitive disequilibrium. Kumagai and Wear (2014), when reflecting on the role of the humanities to teach future medical professionals, describe this as an experience of “discomfort … when encountering a person, an experience, or a perspective which is unfamiliar” (2014, 974) to the learner. Since reproduction and sexuality are controversial classroom topics that touch upon “politicized issues, issues easily personalized, [or] issues easily magnified by extremism or lack of diversity” (Burkstrand-Reid, Carbone, and Hendricks 2011, 678), the exercise was also a way to place learners, and the instructor, in a state of emotional imbalance. In turn, the experiences of and reactions to melding performance and analysis became for everyone (including both authors, in their respective roles) “compasses”—a word used by Bresler (2019) to envision the pedagogical possibilities of using arts-based research methods in the classroom. For all involved, the educational space as a stage, and the use of arts-based research activities with an intersectional lens to explore discomfort, became that cognitive and emotional compass that “orient[ed] us toward that which we encounter[ed] and simultaneously enhance[d] understanding of who we are and who we aspire to be” (Bresler 2019, 651). As we highlighted earlier in this text, one of most reflected upon parts of the learning experience was reproductive health policy affecting how students would engage with their patients. And, for the instructor? Well, for the first author, her unease is connected to the many difficulties this

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new generation of providers will encounter as they graduate and start their professional lives in a contentious second half of 2020, where U.S. politics are informed not only by the continuous neoliberalization of healthcare (Laster Pirtle 2020; Ahlbach et al. 2021) but by politically inflamed cultural practices founded on science denialism (Gonsalves and Yamey 2020; Yamey and Gonsalves 2020; Rudolph et al. 2021). For the second author, who plans to train as a physician and eventually provide reproductive health services to Black women, the political elements are painfully personal and equally distressing. We also need think of the possibility of learners’ resistance to explore reproductive oppression along the lines of race and gender and the effects of students’ political ideologies on pedagogical exercises exploring health inequities. The authors are both racially minoritized women navigating a social context influenced by regionally unique affective economies of racial resentment (Bonilla-Silva and Forman 2000) and White fragility (Nichols and Wacek 2019; Evans-Winters and Hines 2020). Thus, the findings presented here take into consideration this limitation. A small minority of students decided to opt out of the assignment due to their religious views on abortion and sexuality, as noted earlier in the section “Choosing to Not Choose, or Bravely Choosing to Stay.” Some of these students also remarked that the class was focusing too much on racism and racialized oppression. There are two social dynamics we ask facilitators to take into consideration if replicating or modifying this applied health humanities exercise. First, it is vital to understand the role of religious attitudes at the smaller socio-political and geographic level of the population (instead of attitudes at the level of the state) when discussing reproductive health. Adamczyk and Valdimarsdóttir (2018) argue that analyses at the county level (in the United States, the second-level of administrative division within a geographical area) gives us a more complex understanding of societal perspectives on abortion than analyses based only on primary-level/state-level data. Their analysis of the General Social Survey (GSS), a survey that has captured U.S. public perspectives on socially relevant issues since 1972 (Erikson and Tedin 2019), found that an increase in religious attendance at the county level pointed to “both religious and secular residents [having] more disapproving views about abortion” (Adamczyk and Valdimarsdóttir 2018, 140, emphasis ours). While there is no way for us to determine individual religious practices, we can imagine how students’ spiritual practices might affect how they

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engage with the group-based aspect of this exercise. For example, we may find students not wanting to discuss abortion in group settings, even when they are not religious, due to having ambivalent or changing feelings or fearing moral reprisal from their peers. While the pedagogical possibilities of applying the humanities to enhance curriculum in the health sciences, STEM, and medical sciences is gaining more traction, practitioners and educators need to consider how they introduce race and ethnicity. This is even more salient when operating in academic and professional environments with little to no diversity or where the increase in non-White groups is hypervisibilized (Puwar 2004). Some students’ resistance to exploring issues of reproductive health along oppressions connected to racialization, even when using humanities-based tools and practices, might have influenced their decision not to do the assignment due to concerns about it being “biased” against White people and those who held more conservative or religious attitudes regarding sexuality. The use of performance in the educational space provides future health professionals with a “safe space” (Nelles et al. 2018) to explore complex dimensions of socio-cultural issues that they will soon encounter in the clinical space. Therefore, revising or developing new pedagogical strategies (educational spaces using humanities curricula) or group moderating techniques (applying the health humanities in continuing professional education plans) could make inroads to integrating artistic inquiry and facilitating more productive conversations around reproductive health oppression and other health inequities. Finally, both authors understood the emotional toll taken on some students after doing the group performance or reflecting on their development of dramatic scenes and analyses. Many felt overwhelmed at how little power healthcare providers have when faced with situations connected to restrictive reproductive health laws. One instance that stands out is the reaction of several students regarding two pieces of state legislation. The first being the inclusion of medically inaccurate, non-evidence-based information (i.e. suggesting a link between getting an abortion and developing breast cancer) in a medical script used by abortion providers. The second piece is the 24-hour waiting period law, which requires an individual seeking abortion services to receive counselling from a state-based organization and then wait 24 hours before starting the procedure. As one of the students shared, these restrictive directives made them question if a

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provider could give the best care to their patient. As they pointed out, “they are making us lie!” In response to the socio-emotional effects of the class on students that have now learned the implications of restrictive legislation in their lives as well as their career trajectories, the first author provided them with resources, groups, and strategies to impact policy at the local, regional, or national level. She applied for several grants to employ students to work in county-, state-, and national-level voter education efforts that use participatory arts and intersectionality methods. She also researched current advocacy campaigns to connect recent graduates to other reproductive health coalitions doing work in the state or at the university they will attend for medical or graduate school. She also found similar opportunities that focus on local activities for current students. At the time of writing this piece, former students (now alumni) and the first author attended a discussion with local state representatives to learn more about legislative efforts to repeal the 24-hour waiting period in Minnesota. Applying and integrating the humanities to a health sciences curriculum that critically examines reproductive oppression requires that the educator be ready to provide resources for these future health professionals to meaningfully effect change.

Conclusion Since arts-based research methods allow “research questions to be posed in new ways, entirely new questions to be asked, and new non-academic audiences to be reached” (Leavy 2009, 12), then equally important is the role of artistic expression within the realm of teaching and learning. Bresler sees arts-based research approaches as imbued with a pedagogical power to “suppor[t] students in seeing beyond their taken-for-granted categories and surface habits of seeing and relating” (2019, 655). As Women of Colour in spaces where we are read as “space invaders” (Puwar 2004), we recognize that the transgressive possibilities of the humanities can help future healthcare professionals to see the intersectional barriers created by oppressive reproductive legislation. The pedagogical model presented here—using performance and artistic inquiry as research methods to communicate health information—might nurture a space, place, and praxis that can move how health professionals might shape our social moment via humanities-informed clinical practices, while also moving others to act and transform how we heal together.

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Ludlow, Jeannie. 2008. Sometimes, It’s a Child and a Choice: Toward an Embodied Abortion Praxis. NWSA Journal 20 (1): 26–50. Lugones, Maria. 1987. Playfulness, ‘World’-Travelling, and Loving Perception. Hypatia 2 (2): 3–19. Marshall, Sara L., Dinah Gould, and Julia Roberts. 1994. Nurses’ Attitudes Towards Termination of Pregnancy. Journal of Advanced Nursing 20 (3): 567–576. https://doi.org/10.1111/j.1365-­2648.1994.tb02397.x. McKelvey, Robert S., John A. Webb, Loretta V. Baldassar, Suzanne M. Robinson, and Geoff Riley. 1999. Sex Knowledge and Sexual Attitudes Among Medical and Nursing Students. Australian & New Zealand Journal of Psychiatry 33 (2): 260–266. https://doi.org/10.1046/j.1440-­1614.1999.00549.x. McNiff, J. 2014. Writing and Doing Action Research. Sage. McNiff, Shaun. 2019. Philosophical and Practical Foundations of Artistic Inquiry. In Handbook of Arts-Based Research, ed. Patricia Leavy, 22–36. New  York: Guilford Press. Moraga, Cherríe, and Gloria Anzaldúa. 2015. This Bridge Called My Back: Writings by Radical Women of Color. Albany, NY: State University of New York Press. Nelles, L.J., Peggy Hamilton, Paul Robert, Sonia D’Alessandro, Gerri Frager, Lu Jeremy Rezmovitz, Suvendrini Lena Gao, and Anna Skorzewska. 2018. The Use of Theater with Medical Residents. In Health Humanities in Postgraduate Medical Education, ed. Allan D.  Peterkin and Anna Skorzewska, 169–190. Oxford, UK: Oxford University Press. Nichols, Marcia D., and Jennifer A. Wacek. 2019. Frangible Whiteness: Teaching Race in the Context of White Fragility. In Teaching with Tension: Race, Resistance, and Reality in the Classroom, ed. Pilathia Bolton, Cassander Smith, and Bebout Lee. Evanston, IL: Northwestern University Press. Papaharitou, Stamatis, Evangelia Nakopoulou, Martha Moraitou, Zoi Tsimtsiou, Eleni Konstantinidou, and Dimitrios Hatzichristou. 2008. Exploring Sexual Attitudes of Students in Health Professions. The Journal of Sexual Medicine 5 (6): 1308–1316. https://doi.org/10.1111/j.1743-­6109.2008.00826.x. Puwar, Nirmal. 2004. Space Invaders: Race, Gender and Bodies Out of Place. London, UK: Berg. Rapisarda, Clarrice, Marty Jencius, and Jason McGlothlin. 2011. Master’s Students’ Experiences in a Multicultural Counseling Role-Play. International Journal for the Advancement of Counselling 33 (4): 361–375. Rizk, Nina, Shaunpaul Jones, Margie Hodges Shaw, and Adrienne Morgan. 2020. Using Forum Theater as a Teaching Tool to Combat Patient Bias Directed Toward Health Care Professionals. MedEdPORTAL: The Journal of Teaching and Learning Resources 16 (November): 11022–11022. https://doi. org/10.15766/mep_2374-­8265.11022. Rudolph, Jürgen, S.R.  Ching, and Shannon Tan. 2021. Anti-Facemaskism— Politicisation of Face Masks During COVID-19  in the Context of Trump’s

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Plutocratic Populism. Journal of Education, Innovation and Communication 3 (1): 37–58. Saldaña, Johnny. 2021. The Coding Manual for Qualitative Researchers. Sage. Sandoval, Chela. 1998. Mestizaje as Method: Feminists-of-Color Challenge the Canon. In Living Chicana Theory, ed. Carla Trujillo, 352–370. Berkeley, CA: Third Woman Press. Saypol, Ben, Douglas A. Drossman, Max J. Schmulson, Carolina Olano, Albena Halpert, Ademola Aderoju, and Lin Chang. 2015. A Review of Three Educational Projects Using Interactive Theater to Improve Physician-Patient Communication When Treating Patients with Irritable Bowel Syndrome. Revista Española de Enfermedades Digestivas 107 (5): 268–273. Seidman, Irving. 2006. Interviewing as Qualitative Research: A Guide for Researchers in Education and the Social Sciences. New  York, NY: Teachers College Press. Shapiro, Johanna, and Lynn Hunt. 2003. All the World’s a Stage: The Use of Theatrical Performance in Medical Education. Medical Education 37 (10): 922–927. Smedley, Brian D., Hector F. Myers, and Shelly P. Harrell. 1993. Minority-Status Stresses and the College Adjustment of Ethnic Minority Freshmen. The Journal of Higher Education 64 (4): 434–452. Swartz, Jonas J., Carly Rowe, Jessica E.  Morse, Amy G.  Bryant, and Gretchen S. Stuart. 2020. Women’s Knowledge of Their State’s Abortion Regulations. A National Survey. Contraception 102 (5): 318–326. https://doi.org/10.1016/j. contraception.2020.08.001. Tintiangco-Cubales, Allyson, Arlene Daus-Magbual, Maharaj Desai, Aldrich Sabac, and Maynard Von Torres. 2016. Into Our Hoods: Where Critical Performance Pedagogy Births Resistance. International Journal of Qualitative Studies in Education 29 (10): 1308–1325. https://doi.org/10.1080/0951839 8.2016.1201165. Tsimtsiou, Zoi, Konstantinos Hatzimouratidis, Evangelia Nakopoulou, Evie Kyrana, George Salpigidis, and Dimitris Hatzichristou. 2006. Predictors of Physicians’ Involvement in Addressing Sexual Health Issues. The Journal of Sexual Medicine 3 (4): 583–588. https://doi.org/10.1111/j.1743-­6109 .2006.00271.x. Von Robertson, R., Alma Bravo, and Cassandra Chaney. 2016. Racism and the Experiences of Latina/o College Students at a PWI (Predominantly White Institution). Critical Sociology 42 (4–5): 715–735. https://doi. org/10.1177/0896920514532664. Yamey, Gavin, and Gregg Gonsalves. 2020. Donald Trump: A Political Determinant of Covid-19. BMJ 369 (April): m1643. https://doi.org/10.1136/bmj.m1643.

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Angie Mejia  is an assistant professor at the University of Minnesota Rochester. As a feminist methodologist, she employs intersectional analyses, critical participatory methods, and art-based research praxis to examine emotional health inequities in U.S. communities of colour. Her work has appeared in several academic journals, including Anthropologica, Journal of Higher Education Outreach & Engagement and Cultural Studies ↔ Critical Methodologies. Danniella Balangoy  graduated from the University of Minnesota Rochester with a Bachelor of Science in Health Sciences in 2021. She works at the University of Minnesota’s Masonic Children’s Hospital and is applying to medical schools across the United States. She plans to work as a paediatrician and public health researcher one day.

CHAPTER 3

Black Feminist Field Notes: On Designing an Undergraduate, Online, Health Humanities Course in Women’s and Gender Studies Rachel Dudley

“I celebrate teaching that enables transgressions—a movement against and beyond boundaries. It is that movement which makes education the practice of freedom” —bell hooks, Teaching to Transgress

Rachel Dudley—Featuring University of Toledo Undergraduate Student Voices

R. Dudley (*) Department of Women’s and Gender Studies, University of Toledo, Toledo, OH, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_3

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Introduction This chapter articulates a model for how one can develop an effective course in the health humanities, rooted in themes of intersectional feminism and health justice. Specifically, I discuss experiences and lessons from designing an online, undergraduate, health humanities course—offered in Women’s and Gender Studies  (WGST) at the University of Toledo (UToledo). UToledo is a public metropolitan research university, located in Ohio—in the-Midwest, United States. Emphasizing cultural representations,  grassroots movements  and  the theoretical aspects of intersectional feminist health humanities as a framework for such a course provides a strong context for what is possible in the field. In articulating overarching concepts and specific examples of such a pedagogical approach, we can more clearly imagine new areas of opportunity for how the health humanities can be done in application. My special topics course originally titled “Gender, Race and the Health Humanities” provided Black feminist, “critical health humanities” training (Atkinson et al. 2015 and Crawford et al. 2015). It was offered for the first time in Fall 2020 (during the second wave of the Covid-19 pandemic) and it was cross-listed with the Disability Studies programme and the Law & Social Thought programme. The following semester, the course was revised and submitted as a new course proposal through the university curriculum review process, with the inclusive and more succinct title Feminist Health Humanities. It has subsequently been accepted as a permanent course offering  taught in Women’s and Gender Studies and Disability Studies, which fulfils both Writing Across the Curriculum (WAC) and Multicultural U.S. Diversity core curriculum requirements. Throughout the rest of this chapter, I hope to shed light on the ongoing need for such critical health humanities training, while also providing useful resources and insights with broader applicability beyond my immediate area. This is essay is written in the tradition and spirit of works by scholars such as  Arno Kumagai and  Monica Lypson, who published “Beyond Cultural Competence: Critical Consciousness, Social Justice, and Multicultural Education” (2009). First, I provide an overview of the course and its theoretical foundations as well as comments on my background as an interdisciplinary thinker, within a Black feminist intellectual tradition.1 For a classic second-wave definitional framework, it’s essential to turn to the Combahee River Collective’s field-defining writing in “A Black Feminist Statement” which was originally published in 1977 and is

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also included in Beverly Guy-Sheftall’s  Words of Fire:  An Anthology of African-American Feminist Thought  (1995). There the collective famously states that Black feminism “refers to active commitment to struggling against racial, sexual, heterosexual, and class oppression and the development of integrated analysis and practice based upon the fact that the major systems of oppression are interlocking. Centers Black women’s experiences in ending oppression for all (2).” They also articulated: “[I]f Black women were free, it would mean that everyone else would have to be free since our freedom would necessitate the destruction of all the systems of oppression.” This kind of scholarly tradition informs my approach in relation to centring marginalized perspectives, highlighting intersectionality, and teaching for radical wellbeing and social liberation. In this section below, I also provide a definitional framework of the feminist health humanities, which acknowledges existing work in this area and addresses the potential for more scholarship and course offerings. Second, I provide specific assignments and learning resources from the course. I am delighted to share tools for building community in an online feminist health humanities classroom. In doing so, I am also able to honour the virtual community created by participants in the inaugural, online course. Anonymized University of Toledo student voices from the course are presented from discussion posts. Learners included in the “Exemplary Learner Post” section have graciously granted informed consent for publication. I have also included a course schedule snapshot and a reading worksheet assignment example in the Appendix. Third, I share some overarching “field notes from the trenches” which can be of use to any readers attempting to establish new courses, minors, majors, and/or certificate programmes in the health humanities that emphasize diversity, inclusion, and health justice. Specifically, I address insights that may be instructive to others in relation to the following three themes: institutional collaboration, curriculum design, and the larger need for undergraduate, social justice training regarding health (see, e.g., Ruger 2010; Berry 2019; Kumagai and Naidu 2019). Organizing the chapter in such a manner underscores how my course links to important theoretical matters in the health humanities. The overarching goal of a course such as this is to provide awareness of privilege, power, and oppression within social structures related to health & medicine. Further, the goal is to empower future leaders in healthcare by

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sharpening professional self-reflection, analysis, intercultural competence and critical thinking skills. The class fosters the application of WGST knowledge practices within students’ personal lives and within various majors and career paths, involving health—broadly construed. Not all learners who enrol will end up in healthcare or medical professions. Therefore, the Multicultural U.S. Diversity and Writing Across the Curriculum designations allow learners to survey the topic of feminist health humanities while fulfilling core curriculum requirements towards graduation and regardless of their career paths. The course applies approaches from practices in feminist pedagogy and from one of the cornerstone texts in the health humanities on pedagogy so far, Teaching Health Humanities, edited by Banner et al. (2019).

Feminist Health Humanities: A Definitional Framework and Notes on Pedagogy I articulate the feminist health humanities as a scholarly approach rooted in intersectional analysis which includes attention to social identity categories, health, history, society, and culture. As a conceptual framework, the approach emphasizes the following overarching themes: health-based inequalities, notions of wellbeing and health justice, as well as grassroots organizing for social change. Further, it fosters close reading and critical thinking skills through analyses of artistic and cultural representations. Such a theoretical framework also focuses on the social determinants of health and the ways in which social structures directly impact health outcomes. Of course, the field of Women’s and Gender Studies (like Disability Studies) also challenges certain biomedical codification systems and constructions of “normalcy” (or the mythical norm, as Audre Lorde suggested) and their relationships to larger systems of social stratification (see Ben-Moshe et al. 2007). Scholars such as Gilman (1985), Lorde (1992), Hammonds (1994), Reverby (2002), Diedrich (2007), Grigg and Kirkland (2016), Campo (2018), Foster and Funke (2018), Jones et al. (2018), Bailey and Peoples (2017), Banner et  al. (2019), Ray (2019), Gupta (2020), and myself (2021) (and many others) have produced important work in this area which has helped to ensure the incorporation of intersectional, feminist theory and praxis is a vital part of the critical health scholarship and pedagogy.

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In relation to intellectual autobiography, I am a health humanities practitioner with a doctoral degree from Emory University in the interdisciplinary field of Women’s, Gender, and Sexuality Studies. Emory is a hub for scholarship in history, cultural representation, and health humanities related to medicine, English, Public Health, Women’s and Gender Studies and Disability Studies on campus.  This feminist scholarly training extends back to my undergraduate degree at Grand Valley State University in Michigan, and then to the Women’s Studies Master’s degree programme at the Ohio State University. As a result of this training, I have had the pleasure of experiencing the radical possibilities of personal and social transformation within many different classroom environments, taught from intersectional feminist pedagogical perspectives. To fulfil the Ohio State Women’s Studies MA curriculum requirements back in 2008–2009, we had to take a feminist pedagogy course with Dr. Cricket Keating, who is currently Associate Professor of Gender, Women & Sexuality Studies at the University of Washington. She assigned Teaching to Transgress: Education as the Practice of Freedom (1994) by Black feminist author, professor, and cultural icon, bell hooks.2 The wildly popular book in international higher education—where hooks discusses, credits, and extends the teaching methods of Paulo Freire—offered me tools for navigating and constructing my own teaching philosophy (Freire 2017, originally published 1968). It has become one built on a politics of social transformation, love, critical thinking, close reading, rigour, accountability, and classroom community. In Teaching to Transgress, Dr. hooks writes: “the classroom remains the most radical space of possibility in the academy” (hooks 1994: 12). The late bell hooks is, of course, instrumental in the development of a Black feminist intellectual tradition in the U.S. in the late 1980s and 90s (hooks 1989, also see Hull et al. 1982, Hill Collins 2000 [1990], Crenshaw 1991 and GuySheftall 1995). The idea of the “online” feminist health humanities classroom, still rooted in health justice and anti-oppression politics, remains such a transformational space of possibility, particularly in the context of stark local and global inequalities highlighted by the Covid-19 pandemic. In teaching the course, the class and race-based implications of the “digital divide” became apparent, in relation to secure internet connection and access to laptops.  Learners whose families lost employment during the pandemic or who faced other kinds of economic, childcare, housing and/or food insecurity had additional barriers to successful course completion and on-time assignment submission.  Most learners  also had to

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balance completing the class with a range of other obligations in addition to the COVID-19 pandemic, including: other classes, jobs, childcare, selfcare, relationships, sports, military duty and/or other projects.  Feminist Health Humanities: Course Description and Overview In the course catalogue, the description for the “Feminist Health Humanities” course reads as follows: This 15-week course is taught from intersectional, feminist, health humanities perspectives. We will use the arts and culture in combination with humanistic social theory, to examine the following: gendered and racialized health disparities; gendered and racial constructions in the history of science/medicine; illness and disability life writing; biomedical ethics; the feminist health movement; grassroots community health organizing and feminist conceptualizations of wellbeing and radical self-care. Throughout the semester, we will sustain an emphasis on health justice and the experiences of marginalized communities (women, people of color, the LGBTQ community, people with disabilities, working class communities, etc.). Participants will leave the course more aware of important discussions in the health humanities and more fully prepared to apply inclusive knowledge practices within majors and career paths involving “health”  – broadly defined. The version of the course, which was revised and submitted as a new course proposal fulfills UToledo core curriculum requirements for Multicultural U.S. Diversity & Writing Across the Curriculum (WAC).

Fulfilling Writing Across the Curriculum Requirements As mentioned, the revised version of this course was submitted for a new permanent course proposal. It is now designated as a Writing Across the Curriculum (WAC) course, which means that much of the learning and assessment is based on fostering interdisciplinary writing skills. By the end of this kind of course, learners are better prepared to express their ideas in a compelling and interdisciplinary manner. The updated WAC version of the course is designed to strengthen critical thinking and analytic skills in writing, whether that be in future coursework, in chosen career paths, or in a future graduate school programmes or other areas of advanced study. Courses with this designation are created to help learners reflect on content through frequent (and varied) writing assignments. Examples include:

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weekly discussion posts; a film analysis; a scholarly research article reflection; weekly peer response posts and peer responses; written short answer responses on the midterm; a written final project statement and draft and a revised final project research essay. Fulfilling Multicultural U.S. Diversity Core Curriculum Requirements All courses taught by faculty in UToledo’s Women’s and Gender Studies (WGST) Department focus on ending structural violence and oppression. Additionally, WGST courses foster post-graduation readiness through written critical reflection and emphasis on themes of unconscious bias, intercultural competence, cultural diversity, inclusion, and social equity. Points 7–9 in the Student Learning Objectives provide more information on how this course is designed to fulfil the UToledo core curriculum requirements for Multicultural U.S. Diversity: Student Learning Objectives 1. Apply feminist social justice frameworks to various topics in health, through readings in scholarship, poetry, life-­writing, podcasts, and print journalism. 2. Understand the socio-historical context of health inequities and apply intersectional analysis to past and present health disparities. 3. Think creatively about current and future solutions to social problems related to health—on community, grassroots, and global levels. 4. Review major case studies in histories of exploitative medical experimentation and understand biomedical ethics in the context of civil and human rights frameworks. Also understand major issues in biomedical ethics. 5. Apply critical thinking, analytical skills, and visual literacy to cultural representations of gender, race, health, and illness. 6. Write and reflect on feminist health humanities training in relation to your own life, major, and career path. 7. Explain the cultural relationships between dominant and non-dominant cultures within the United States. 8. Describe how diverse cultural communities contribute to the development of U.S. culture. 9. Compare complex social structures within diverse U.S. cultural communities.

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For a global reading audience who may be unfamiliar with the particulars of U.S. core curriculum standards, one can see the articulated aims in the following statement, which appears in the UToledo university catalogue (The University of Toledo 2021: https://catalog.utoledo.edu/): The UT Core Curriculum gives students critical reasoning skills to explore complex questions, grasp the essence of social, scientific and ethical problems, and arrive at nuanced perspectives. It hones the ability of students to communicate artistically, orally and in writing. It allows students to recognize their place in history and culture, and to appreciate their connection to others in a multicultural world. It prepares students to be thoughtful, engaged citizens in a participatory democracy. It requires students to explore the whole range of the liberal arts, both for the intrinsic value of doing so and in preparation for study in their degree programs.

Taken together, the course’s Student Learning Objectives tie into the core curriculum goals and emphasize a transferrable skillset. The intention in sharing these learning objectives is to provide a snapshot which highlights how we can continue to use the critical health humanities to stage interventions in curriculum, pedagogy, and undergraduate professionalization.  Toledo Student Population Demographics U The University of Toledo is a mid-sized, teaching-centred, Research 2, metropolitan state university in Ohio. Statistically, 22% of our UToledo learners are from underrepresented racial or ethnic minority communities. Additionally, nearly 40% of our UToledo undergraduate learners receive Pell Grants for high financial need in relation to college expenses. Just under a third (about 30%) are first-generation college students, meaning they are the very first in their families to attend college—so their parents/ guardians did not earn a college degree. These learners often must navigate the “hidden curriculum” of college in addition to financial stress and social/familial pressures to succeed. The “hidden curriculum” refers to unspoken rules and expectations for success in college. Examples may include knowing about utilizing a professor’s office hours, knowing how to navigate financial aid, and traversing social class-based notions of professional interactions and communication. Further, UToledo is also considered a top school for supporting military and veteran students. A large percentage of our student population are

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also non-traditional learners who work full time and commute to on-­ campus classes. Therefore, the university is positioned in quite a unique way to heed bell hooks’ call for ongoing liberatory pedagogy in the U.S. higher education system.

Notes on Teaching Feminist Health Humanities Topics Through the Covid-19 Pandemic and Multiple Socio-Political Crises The first iteration of the course was taught through ongoing racial unrest due to state violence aimed at Black Americans, including mass social protests following the murders of George Floyd and Breonna Taylor, plus activist responses from the global Black Lives Matter Movement (founded in-part by Black queer-identified women).3 We were also witnessing rises in murderous violence aimed at trans communities (often of colour) and a devastating economic recession and inflamed political rhetoric.4 Additionally, we were contending with the separation of Latinx migrant children from their parents and families at the U.S. border, the so-called Muslim ban, as well as increases in white supremacist violence following Trump’s election in 2016.5 Infamously, at one of his political rallies in Tulsa, Oklahoma on June 20, 2020, Trump used a racist slur—referring to the Covid-19 virus as the “kung flu.” Numerous national and international news outlets, including Democracy Now, CNN, Al Jazeera, The New York Times, and The Washington Post reported on his comments at the time. Subsequently, the Anti-Defamation League published the “Online Hate and Harassment Report: The American Experience 2020,” which found that the pandemic corresponded to a 6% rise in online hate speech, directed at Asian Americans. Then, President Trump’s comment had the rhetorical effect of stereotyping and scapegoating AAPI communities for the Covid-19 pandemic.6 Also, at the time of the course start date in August of 2020, the John Hopkins University Corona Virus Resource Center was reporting over 180,000 Covid-19-related deaths in the United States—which were rising rapidly by the day (Johns Hopkins Corona Virus Resource Center 2020:  https://coronavirus.jhu.edu/). Due to structural violence, these mortality statistics disproportionately impacted Black/Latinx and Indigenous communities.7

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The racial disparities in mortality rates and the class dynamics of “front-­ line” worker status are well documented, including in an article published in real-time by the New York Times, titled “The Fullest Look Yet at the Racial Inequality of Coronavirus” (Oppel et al. 2020). Pedagogical tools for working through these historical, political, public health and economic crises were built into the course in an attempt to help learners make sense of the times, through various critical lenses of feminist health humanities. For example, in discussing the crucial theme of “Critical Race Feminism and Public Health Perspectives” learners were assigned a pre-recorded webinar on YouTube called “Under the Blacklight: The Intersectional Failures That Covid-19 Lays Bare,” which was recorded on March 28, 2020. The webinar was hosted by internationally renowned professor Dr. Kimberlé Crenshaw, who famously coined the term intersectionality—as a linguistic shorthand for the interconnected nature of structural inequalities (Crenshaw 1991, 1244). Through this conceptual framework, which originally applied to legal contexts, we can more easily see how single-issue framings of health inequalities fall short. Crenshaw now serves as President of the African American Policy Forum and endowed professor at Columbia and UCLA Law Schools. The webinar panel co-sponsored by the Center for Intersectionality and Social Policy Studies featured five panellists, including: Eve Ensler, playwright, performer, activist and founder of V-Day and One Billion Rising. Additionally, the panel included Laura Flanders, author, broadcaster, and host of The Laura Flanders Show, which “explores actionable models for creating a better world by reporting on the people and movements driving systemic change.” The virtual panel also included: Eddie S.  Glaude Jr., Princeton Professor of African American Studies; Ai-jen Poo, Director, National Domestic Workers Alliance; Dorothy Roberts, influential scholar of race, gender, sexuality, and the law, and University of Pennsylvania, Professor of Law and Sociology. The panel was considered a “social justice S.O.S. event,” and in the words of Dr. Crenshaw, the purpose was to Elevate all of the activism that is currently being done on the front lines and we want to discuss the historical, political and the deeply intersectional dimensions of Covid-19. Covid-19’s collision has laid bare the profoundly hierarchal, racist patriarchal organization of our society. Now, much has been made of the American public’s need to stare down the crises that forged between a relentless pathogen and the negligence of our leaders.

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Dr. Crenshaw states further: [B]ecause of this brutally lethal interplay, people are dying and many will die in the next several days. Yet, our analysis of what is going wrong can’t be absorbed in a singular indictment against a deadly pathogen or an incompetent administration. A robust intersectional discourse acknowledges both the common threats that we all face along with the fact that the dramatic maldistribution of survival resources is part of this crisis. Those conditions include: permissible isolation, access to affordable food and accessible healthcare. Yes, we are all equal in this Orwellian nightmare but some of us are more equal than others. (Kimberlé Crenshaw 2020)

Dr. Kimberly Crenshaw and Dr. Daniel HoSang edited the panel series into a forthcoming anthology: Under the Blacklight: The Intersectional Vulnerabilities that the Twin Pandemics Lay Bare (2022). The esteemed panel—which represented the course’s first digital media example—highlighted the following: on the ground experiences of caregivers who are disproportionately women of colour and the experiences of low-wage workers, immigrant women, and nurses during the pandemic. According to statistics from the World Health Organization, 86% of nurses are women in the context of the Americas (Boniol et  al. 2019). The discussion of nurse experiences specifically highlighted the work of National Nurses United, identifying parallels to the AIDS crisis, and lessons from other epidemics in understanding the specificity of marginalized perspectives. The panel also illustrated intersectional vulnerabilities by centring elderly Black women’s lives and explaining structural violence. Additionally, panellists touched on the historical dimensions of social welfare, the “underbelly” of American life and the differential way harm is experienced. Last, the panellists expanded the discussion to global health disparities and global social policy in relation to the pandemic.

Cultural Images and Digital Media Examples in Feminist Health Humanities Pedagogy The course’s weekly digital media examples—“Under the Blacklight” and many others—were important in anchoring theoretical course texts to concrete realities and examining what was happening on the ground, how to cope and maintain hope, and how to get involved. This also helped learners and me to process what we were experiencing personally and

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structurally with the myriad social, economic, political, and public health problems. My pedagogical goal here was to bring in relevant, timely media examples—rooted in feminist health humanities perspectives—that helped learners process and reflect on the readings, lectures, and our larger socio-­ political situations. Additionally, to foster solidarity with Asian American Pacific Islander (AAPI) communities in the face of violent scapegoating and to encourage intercultural reflection, I also decided to assign The Farewell (2019). It’s a Spirit Award–winning film directed by Lulu Wang and starring an all-­ Asian cast, including: Shuzhen Zhoa, Awkwafina, and X Mayo. The film centres on a Chinese American woman protagonist’s perspectives on visiting her grandmother with family in China. The family knows that the grandmother is dying of cancer and they consciously choose not to share the news with her, operating on the belief that such an approach would preserve her psychological wellbeing for longer. The central theme in the film is about cultural differences between Western and Eastern approaches to medicine, family caretaking, and the moral decision of the family to hide news of the grandmother’s terminal cancer diagnosis from the protagonist. It forces compelling questions about mortality, family, ethics, intergenerational ties, migration, gender, and identity within the Asian diaspora. Importantly, this film helped learners process death and cancer in their own lives and to think through cross-­ cultural contexts for approaches to health, illness, family dynamics, aging, and dying. While teaching the course, I also became aware of controversies surrounding the lead actress in the film (stage name Awkwafina, real name Nora Lum). There were conversations taking place, mostly in Black American media outlets, regarding cultural appropriation and Awkwafina’s use of dramatized Black speech affectations—colloquially referred to as a “blaccent”—during her rise to stardom as a rapper and social media personality (Jackson 2018). These controversies required sensitivity and led to nuanced conversations among class participants about the meaning of cultural appropriation. These debates notwithstanding, ultimately it was my hope that this kind of film would empower learners in the Asian diaspora and provide a counterbalance to hate-based crimes and violent political rhetoric targeting AAPI communities.8 Overall, the use of media examples allowed for learners to examine issues of gender, race, health, illness, and cultural representation. This is important in equipping learners with critical media

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literacy skills, rooted in feminist enquiry. These digital media and visual literacy skills foster an ability to critically interpret, comprehend, and negotiate the language of visual culture in relation to other kinds of social “texts.” The theoretical premise of this approach is rooted in Paulo Freire’s notions of critical literacy, which is the idea that learning to closely read the written word prepares learners to “read” the social world as well. This notion is articulated in several his works, most notably Pedagogy of the Oppressed (1968) and Literacy: Reading the Word and the World, co-­ authored by Donaldo Macedo (1987). Friere explains: “[r]eading the word and learning how to write the word so one can later read it are preceded by learning how to write the world, that is having the experience of changing the world and touching the world” (1987: 5).

A Sampling of Thematic Units, Discussion Board Prompts, and Exemplary Learner Posts Through the discussions of Paulo Freire and bell hooks, we can see how reading written theoretical texts can “scaffold” (or sequentially structure) the reading of visual, social, and/or cultural texts. I am delighted to share examples of exemplary discussion board posts, provided with permission from UToledo learners. This section includes a response to the discussion prompt about The Farewell film mentioned previously. Each of the selected learners engaged thoughtfully, analytically, and productively with course materials and asked compelling discussion questions. They thought with sophistication about the materials, themselves and their majors, and career paths in insightful ways that are instructive for us here about the application of WGST knowledge practices and feminist pedagogy. For readers of this chapter, my hope is that sharing student work will provide a glimpse into how learners at a mid-sized, metropolitan university in the heart of the U.S. Midwest are grappling with feminist health humanities themes. In relation to the theoretical underpinnings of the course, the weekly themes and discussion prompts allowed learners to survey important topics in the field from a variety of disciplinary perspectives, while honing feminist modes of analysis. Using WGST approaches, learners were asked to engage with works from scholars in the fields of public health, medical history, English, disability studies, biomedical ethics, and queer theory.

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We ended the course by examining grassroots health organizing, which encouraged reflection on solutions to social problems related to health and allowed learners to understand “praxis” as a central theme in intersectional feminist thought. Taken together, the discussion board served as a means of building community online and pushing learners to find their “voice” in relation to key health humanities topics. As a series of exercises, they mesh by developing engaged student participation and asking learners to make connections between readings, course themes, media examples, the work of their peers, and the broader social world. The prompts were created to foster reflexivity on interactions between both “micro” and “macro” health-­ related phenomena, in a sociological sense. A sampling of themes, prompts, and exemplary learner posts is included next. Gendered and Racial Constructions in the History of Modern Science and Medicine The discussion board prompt for this theme was: “What’s one new concept you learned from this module that seems to be sticking with you the most? How do you think our course’s feminist health humanities framework helps us to understand dark histories of race and gender in medical experimentation? What do you think are the key takeaways from these dark histories, in relation to medical ethics?” Exemplary Learner Post Though I was not completely unaware of the dark history of medicine, this week’s module put it into an even more detailed perspective. Gynecology, especially, is a field that would likely not exist without the contribution of Black women – and yet, this invaluable contribution was coerced through acts of violence (Owens, Cooper and Deirdre 2017). One of the quotes from the article “Introduction: Gynecology and Black Lives” that stuck with me because of this was the description of Black women’s role in the development of gynecology. Owens states “… for pioneering gynecological surgeons, black women remained flesh-and blood contradictions, vital to their research yet dispensable once their bodies and labor were no longer required.” It is not sustainable to treat human beings like this – one cannot be both dispensable and vital. Slavery, medicine and science are intertwined so intimately that they practically cannot be separated from one another when looking with a historical lens. While those in medicine have worked to make amends for the ways

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that medical professionals of the past abused both Black women and men by taking advantage of them, we still have a long way to go. The case of Sara Baartman also shows abuse in a wider scope than just gynecology; she was dehumanized, reduced to a circus attraction, for little more than just existing as a Black woman from a dwindling group called the Khoi Khoi. Little, if any, concern was given to her physical or mental health or even just her overall wellbeing; she was an object to them, not a person. Viewing this history through a feminist health humanities framework helps us reimagine these historical atrocities and see the people who were hurting as a result of them. I will never be able to feel the suffering of Henrietta Lacks, or Sara Baartman, or any other woman who was put through the atrocities that formed modern gynecology and modern medicine itself, but education is the best way forward so we as a society can be better to our people. Especially as someone who wants to be a physician, approaching these histories from a health humanities framework is incredibly important. It tells us that when it comes to medical ethics, we must be better today than we were yesterday with both our actions and our words. Access to healthcare is a human right, and although we do not deny people explicitly based on race or other factors, socioeconomic barriers still affect access to healthcare. We must put our money where our mouth is and make healthcare as a human right part of the medical code of ethics. Otherwise, what kind of country are we?

Disability, Personal Illness Life-Writing, and Narrative Medicine The discussion board prompt for this theme was: “Why do you think Audre Lorde has become such a powerful and widely referenced representation of illness/disability life-writing? Further, what do you think of the role narrative medicine can play in how doctors/health professionals treat illness? Please also include a discussion question within your post.” Learners were asked to complete their post after reading works by Audre Lorde (1992), Rita Charon (2006), and Thomas Couser and Susannah Mint (2019). Exemplary Learner Post Why do you think Audre Lorde has become such a powerful representation of illness/disability life-writing? Audre Lorde was not scared to speak her mind. She knew that even your silence could be held against you, so why not ask the questions that scare you? Audre Lorde became such a powerful representation of illness/disability life-writing because she claimed her illness, in relation to her identity and

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faced it all head on. Furthermore, she gave woman and anybody else who had problems speaking about their own health, or looking for answers from caregivers a way to not be afraid when their lives are involved. Lorde also documented her own journey with cancer and in that she found herself questioning “acceptable norms” and finding ways to embrace who you are in the inside as much as the outside. Shouting out those differences and being okay with them and just asking the same of others that if you are okay with yourself, disability, and so on then why should anybody else have a problem? She discussed her personal experiences in relation to healthcare in America as a Black, Lesbian, Feminist, Mother, Warrior Poet. Further, what do you think of the role narrative medicine can play in how doctors/health professionals treat illness? I like this question! I think narrative medicine plays a great role in how doctors/health professionals treat illnesses. To really get to know your patient and take your time with them is important. People know doctors and nurses are busy, but it always takes that extra step to make a difference in a caregiver patient relationship. When there is someone who cares, you are better able to communicate your concerns or worries. Narrative medicine helps build a great relationship if it is used correctly. Reading what Rita Charon has said, I have found it does help with a patient’s trust. Discussion Question: Where does this fear come from when we have questions about our own bodies? Does this play a role in everyone’s life when thinking about race, gender, and ability and how patients/caretakers can advocate successfully in medical situations? How do you handle this fear and what do you think about how Audre Lorde did this in the Cancer Journals?

Medical Ethics: Historical Case Studies and Global Human Rights Perspectives Learners were assigned an article by Jonathan Metzl and Dorothy Roberts titled, “Structural Competency Meets Structural Racism: Race, Politics, and the Structure of Medical Knowledge” (2016). They also read Susan Reverby’s “Ethical Failures and History Lessons; The U.S. Public Health Service Research Studies in Tuskegee and Guatemala” (2012). They were asked to explain your understanding of Susan Reverby’s article “Ethical Failures and History Lessons: The U.S.  Public Health Service Research Studies in Tuskegee and Guatemala” in relation to the following keywords: race, gender, sexuality, informed consent, and biomedical ethics. Make sure to use at least one direct and relevant quote from the Reverby article (including page number). Also, please analyse and discuss how the Reverby article relates to this week’s media example, Miss Evers’ Boys (1997).

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Exemplary Learner Post Susan Reverby, in her article “Ethical Failures and History Lessons: The US Public Health Service Research Studies in Tuskegee and Guatemala,” urges us not to view bioethics and its implications as simply an issue of days gone by. Notably, an apology was issued for the venereal disease studies in Guatemala from 1946 to 1948 in 2010—more than 60 years later, and only 10 years ago! Clearly, ethics within medicine is something that must be actively upheld and practices must be viewed with a critical eye. Sometimes, information is valuable but the ethical implications outweigh the information to be gained. One of the direct quotes from Reverby’s piece that struck me as relevant was the following: “Each study conjures up almost primordial and powerful fears: lack of control over our own bodies, dangers of abuse by those with great power, terror of putting trust in physician/scientists who respond with what many see as close to medical torture, and perhaps most destructively the racism of treating people of color as the ‘other’ both in the U.S. South and the Global South” (pp. 2-3). This gets at the heart of the problem; bodily autonomy, abuse of power, and othering people of color, covering the bases of race and gender as they relate to bioethics. In Guatemala, sex workers (largely women) were unknowingly infected with STDs, and the infamous Tuskegee study of course consisted of letting Black men with syphilis go untreated, and without knowledge of their condition to begin with. While this absolutely would not be accepted in today’s medical ethics, it’s important to ensure our current practices won’t be seen the same way in 50 years. And, of course, it still happened, and according to the Reverby article, it was allowed to occur for 40 years. Miss Evers’ Boys (1997) explores the destructive effects of the Tuskegee studies in a narrative fashion, and shows in film and as a story some of the atrocities that Reverby describes academically within her writing. My discussion question is: The movie starts with Miss Evers’ court testimony. What do you think of her and how she made sense of what she was being asked to do throughout the trials and in court? Illness, Disease, and Cultural Representation During this week of the course, learners were asked to screen a film called The Farewell (2019), directed by Lulu Wang and starring Shuzhen Zhao, Awkwafina, and X Mayo. Learners were asked to read excerpts from the

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Health Humanities Reader (2019) and Teaching Health Humanities (2019), including “Moving Pictures: Visual Culture/Visual Activism in the Health Humanities Classroom” by Therese Jones (2019). Fascinating questions were raised by the film, not only about cultural representation, gender, migration, and Eastern versus Western perspectives on death and dying, but also about solidarity with students from the Asian diaspora, in the face of vicious scapegoating during the COVID-19 pandemic (see initiatives such as the Stop AAPI Hate (2021): https://stopaapihate.org/ about/). The discussion board prompt for this theme was: “What resonated with you about the film and how do you think the film relates to our course themes?” Exemplary Learner Post Hello! This film was emotional for me. My grandmother’s death anniversary just passed on September 7, 2019 she died of cancer that metastasized throughout her body. I was thinking back on the way my family dealt with this situation. Everyone in my family knew, even the younger kids who could understand knew. It brought us closer as a family, when we found out about my grandmother’s condition. She was diagnosed 2 years ago sometime in the summer of 2018. My grandma was strong willed and her faith very unyielding as we are also Christian. Throughout her time we have memories of celebrating and love and when we knew she wasn’t going to be healed we had even more time spent together crying, laughing, loving some more and finally saying goodbye. At first when watching “The Farewell” I was annoyed and I thought the family was selfish for not telling Nai Nai and further more I was thinking what kind of hospital would let family withhold information like that from someone. I really had a culture shock watching this film. I slowly realized they were not being selfish but following the ways of their own culture. I don’t agree with what they did, but that is why my family handled things with my grandma the way we did. My grandma stayed positive until the very end and I know she had hard times she cried but through it all we relied on God to lead her and that’s what my family believes in. I was happy to see that Nai Nai lived for 6 years after. I sometimes wonder how much longer would my grandmother have had if she never went to chemotherapy. I always felt like the medicine fighting the cancer inside of her made it worse but then again, I am not a doctor so I can only assume. This for me was nice to compare the difference in culture and see how this family handled this situation with nana Nai Nai or just the Chinese culture in general—great film!

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Health, Heteronormativity, and LGBTQIA Inclusivity The discussion board prompt for this theme was: “Identify and discuss three aspects of this week’s module materials that resonated with you the most. Make sure to address the reading, the article, and the podcast in your response. Please also address your understanding of how centring marginalized stories helps us all and how you plan to advocate for yourself better when it comes to gender and/or sexuality in the context of medical care.” Exemplary Learner Post The Sex Gets Real Podcast, episode 171: “Queer and Trans Healthcare” by Dawn Serra was a great recording to listen to and I absolutely enjoyed it. The conversations were real and raw and quite true for how people respond when they have been mistreated by healthcare professionals based on social identity. They don’t want to go back. I really enjoyed the trans buddy system that they mentioned which is to have an advocate go to a doctor’s appointment with a trans person to make sure their rights are not being violated and that they are being heard and respected. I am 100% down with that idea and would like for it to happen and I liked how they threw that idea in for bigger people as well just having that support is important. Back to the LGBTQ+ community, this really tied into what Zena Sharman talked about in her book, “Why Queer and Trans Health Stories Matter.” She immediately seemed like a ball of fire when reading her perspective of what happened to her trans friend who identified as a woman and had a male anatomy. Her friend was looking to have transitional surgery which in the end left her with a colostomy bag and no change. This left her friend with no answers and in search of a doctor who could reverse the procedure that had been done. Dr. Sharman is a woman who demands respect for the LGBTQ+ community and she has plenty of first-person stories from people who have been mistreated by the healthcare field (Sharman 2016). Dr. Sharman is advocating for affirming care, which actually helps us all. The discussion in her book for a more inclusive healthcare system for all is awesome and she even talks about how young people who are a part of the LGBTQ+ community can navigate going into a doctor’s appointment. She provides great tips as to doing research and finding the best help and also knowing what’s best for your body because as Sharman says, “you are the expert on your body.” With keeping all of this in mind, it’s important to read and hear about these things so for one, people know what’s going on and that healthcare has plenty of grey areas when it comes to stigmatizing and marginalizing

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others and it needs to be a part of the conversation for people to see change. At the same time there are ally’s and medical professionals who strive to provide affirming care. Advocating is important and being blunt about your needs is important because when looking at healthcare it’s not a joke as to what damages can be done to someone if proper care is not being given. Discussion Questions: How proactive are you in your life when going to see the doctor. Do you have to be proactive? If you have privileges, do you recognize the benefit you have? Have you ever been mistreated by a healthcare professional and if so, how did it make you feel?

Radical Self-Care and Healing Justice Frameworks The discussion board prompt for this theme was: “What resonated with you from the BBC podcast programme by Shahidha Bari called Radical Self-Care and the interactive website called ‘Healing Justice: Transforming Movements Report’ by the Astraea Lesbian Foundation for Justice? Also, make sure to elaborate on your understanding of how the notion of wellbeing is related to social stratification.” Exemplary Learner Post In the podcast Radical History of Self-Care, the one part that stood out for me is the statement “self-care is the norm for marginalized groups and how they have survived” (Bari 2020). I know prior to this week’s module if someone asked me to explain self-care, it certainly wouldn’t be as deep and broad as discussed by these authors. For marginalized communities, self-­ care is essential to survival. What was interesting to hear is how the Black Panther Party created free health clinics as there was an intersection of civil rights and healthcare. Many healthcare facilities were still operating under Jim Crow; therefore, the need for care expanded in a non-traditional way-. How and where people live impacts health and their ability to be healthy. For example, the current pandemic has highlighted the systemic inequalities as people of color are impacted at a higher rate. The ability to be healthy has become a privilege instead of a right. The report Healing Justice: Transforming Movements was also an enlightening read discussing healing justice and healing security. According to the report, healing justice was used “as a framework to identify how we can holistically respond to and intervene on generational trauma and violence” (Page and Raffo 2010; www.astraeafoundation.org/microsites/healingjustice/). Healing security is “naming psychosocial, physical and digital wellbeing and diverse security strategies as fundamental components of movement

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work” (Page and Raffo 2010). Through this module, wellness is about how someone’s lived experience and environment affect wellbeing. “Both depend on an interplay between safety and wellness as integral to our political liberation and freedom” (Page and Raffo 2010). It is important to understand that stress, trauma, and life experiences differ from one individual to another and from one social position to another. Recommendation number five stood out to me, “be aware that healing does not have a goal or endpoint. Work to move away from ableist notions that only see one type of body as healthy. Healing justice is meant to be expansive and self-determined by our communities, not defined by a medicalized or socialized idea of wellness” (Page and Raffo 2010). This all reminded me of our previous module where the trans community members were finding ways outside of traditional medicine to care for one other and work through various social situations with medicine. Discussion Question: My question for this week is what practices, like those of the Black Panther Party, can we use today to ensure wellness equality in a capitalistic society that profits off of oppression?

Learning from Students, Building Community Online, and Cultivating Transferrable Skills Feminist pedagogy seeks to identify and challenge hierarchal approaches to learning, known as “top-down” and “banking system” education models. Instead, the discipline seeks to honour learners as producers of knowledge themselves. With learners coming from numerous intellectual and cultural backgrounds, one of the most significant aspects of the course was learners’ engagement with each other’s work. It became evident throughout the semester that the course had a cathartic function within the context of the pandemic, racial violence, and other global issues. Discussion prompts were created to encourage interpersonal, scholarly, and cultural reflection. The final project provided a choice for how learners wished to be assessed and to demonstrate a command of course concepts. Regardless of the chosen final project, assessment focused on the cultivation of metacognition, professional goal-setting, and critical, reflective analysis. This was measured by whether learners met rubric requirements for their selected project. I also used the final project as an opportunity to demonstrate mentorship and to model community care. One way I attempted to accomplish this aim was through recording a guest speaker in the medical/health professions to serve as a possibility model. In this case, I

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recorded myself interviewing a second-year medical student at UToledo who also had a dual undergraduate major from UToledo in Chemistry and Religious Studies—Hedyeh Elahinia. At the time, Hedyeh was serving on the executive board of the UToledo College of Medicine and Life Sciences, Health Humanities Club. One additional way of building in mentorship had to do with a required, one-on-one, 20- to 30-minute final project draft consultation, via Blackboard Collaborate videoconferencing technology. Both approaches represent ways of building in touch points that allowed learners to reflect on how the course fit into their larger professional goals and how they would use the final project as an opportunity to develop a graduate school/ medical school or law school portfolio or a research essay writing sample, or to sharpen their research project presentation skills.

Reflections for Course Design, Minors/Majors, and Programme Development In hindsight, the most important instructive aspects of designing, teaching, and revising this course have to do with identifying institutional stakeholders and collaborations, fulfilling core curriculum requirements, and teaching for health justice and transferrable professional skills. First, to construct the course, it was important to work with other departments for cross-listing opportunities to foster collaboration and radical interdisciplinary inquiry—a defining feature of the health humanities. In this case, it was most applicable to foster collaborations and a cross-listing opportunity with the UToledo programmes in Disability Studies and Law & Social Thought. The key was to identify other stakeholders on campus. The opportunity for learners to enrol in the course through different disciplines not only strengthened institutional collaborations but also provided a richness of perspectives and interactions. Second, in revising the course into a new permanent course proposal, I wanted to make sure it would meet the most urgent learner needs. In doing so, I worked with the College of Arts & Letters advisors and the Office of the Dean. We identified a need for courses with designations that fulfilled  both Multicultural U.S.  Diversity requirements and Writing Across the Curriculum (WAC) requirements. This process underscored the significance of learning and addressing university core curriculum standards in proposing new health humanities courses to ensure the broadest possible appeal.

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Last, and most importantly, this course was designed to address the ongoing need for integration of health humanities offerings addressing intersectionality and social justice (see, e.g., Piemonte and Kumagai 2019). Hopefully, the course serves as an example of Black feminist pedagogy that tends to racial/gender healing justice work as well as implicit bias training, intercultural reflection, and trauma-informed care interventions (see Page and Raffo 2010). In that sense, it serves as a case study for course design in the spirit of the critical health humanities—which is about taking risks in scholarship and teaching, with all of the concomitant opportunities and challenges (also see Viney, Callard and Woods 2015). Signing off, from the trenches of feminist health humanities pedagogy—in application.

Appendix Table 3.1  Week 1 Course Schedule Snapshot Week

Theme

Week 1 Identifying and Combating Health Disparities— Critical Race Feminism and Public Health Perspectives

Week 2 The U.S. Feminist Women’s Health and Reproductive Justice Movements

Readings “Intersectionality and Health: An Introduction” by Leith Mullings and Amy Schulz” (2006: 3–17) “Q+A Kimberlé Crenshaw” By Katy Steinmetz. Time Magazine Article (2020).

Media example Discussion Board Prompt

Recorded YouTube Webinar “Under the Blacklight: The Intersectional Vulnerabilities that Covid-19 Lays Bare” by Kimberlé Crenshaw, Executive Director of the African American Policy Forum “Reproductive Justice: YouTube An Introduction” by Video by Lorretta Ross and BigThink.com: Rickie Solinger (2017: “The 1–8) Importance of “Feminism and Our Bodies Health” by Susan Ourselves” Reverby (2002: 5–19) (2015)

In your informed opinion, what role does “intersectionality” have in helping us to identify and combat health disparities? Please also include a discussion question at the end of your post.

What’s your understanding of the difference between reproductive rights and reproductive justice, according to reading/s and module materials this week? Please also include a discussion question at the end of your post. (continued)

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Table 3.1 (continued) Week

Theme

Week 3 Disability, Personal Illness Life-writing and Narrative Medicine

Readings

Media example Discussion Board Prompt

“The Cancer Journals (1980) by Audre Lorde” in Disability Experiences: Memoirs, Autobiographies and Other Personal Narratives, edited by Thomas Couser and Susannah Mint “Introduction—Body Language: Illness, Disability, and Life Writing by Thomas Couser (2018: 1–8); https://www. ourbodiesourselves. org/ “How Storytelling is Changing the Way Doctors Treat Illness” by Abigail Rasminsky for O, The Oprah Magazine (2012)

The Cancer Journals Revisited, Documentary by filmmaker Lana Lin for Women Make Movies (2018)

Why do you think Audre Lorde has become such a powerful representation of illness/disability life-writing? Further, what do you think of the role narrative medicine can play in how doctors/health professionals treat illness? Please also include a discussion question at the end of your post.

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Table 3.2  Reading Worksheet Example Quote from Week 1 Readings

Keywords

Brief Reflection on Quote

“Not everyone aligns with medical visions of healthcare… there are multiple and often complementary contributions to health and wellbeing that fall outside of medicine per se” (Crawford et al. 2015).

Medicine Wellbeing Health (humanities)

“Intersectionality is a particularly useful theory in medicine where categories are ubiquitous (e.g., boxes to tick on the EMR) yet rarely explored at their intersections. For instance, one can speak globally about “men’s health” but not consider the intersection of race, class, gender identity, ability, religion, national origins, or immigration status as they factor generally into men’s health or as they factor into a particular man sitting before us” (Jones et al. 2017).

Intersectionality Medicine Health Race, gender identity, (dis) ability Health disparities/ equity Social determinants of health

I found this quote to be striking because it brought up a point I had not previously given much thought to before I completed the reading. Medicine IS a rather exclusionary term, and as the author says, many things fall outside its scope while still existing within the scope of health. It gave me a much better understanding of why many scholars are encouraging the use of the term “health humanities” as opposed to “medical humanities” as was most commonly used from the 1970s onward. It definitely caused me to question my use of language, as I speak about medicine and health fairly often with others in my daily life. This quote resonated with me because I believe that it gets to the heart of why intersectionality is crucial in the practice of medicine. All too often, the practitioner checks off the boxes but does not consider the effect that those categories have on a living, breathing human being. These intersections must be explored so that someone practicing medicine or the other sections of the healthcare field have a better perspective on what their patient is facing health-­ wise, and why. Men’s health, as used as an example in the quote, is also dependent on a multitude of factors that it is crucial to not overlook. This also touches on the concept of “narrative competence” discussed in the other reading, Feminist Encounters with the Medical Humanities.

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Notes 1. My pedagogy exists in a tradition of Black feminist scholarship and teaching. It was inspired, particularly, by foundational contributions from the following late twentieth-century, intersectional feminist thinkers: The Combahee River Collective (1995), Hull et  al. (1982), Walker (1983), Hill Collins 2000 [1990], Lorde (1992), Moraga and Anzaldua (1981), hooks (1987, 1993), White (2000), Guy-Sheftall (1995), Clark Hine (1995), WallaceSanders (2002), and Foster et al. (2009). 2. I learned about the death of bell hooks as the final version of this chapter was being completed. I had always planned to anchor the chapter in a quote from Teaching to Transgress: Education as the Practice of Freedom and to discuss her contributions as a centrepiece of the writing. However, it became all the more important to do so, after learning of hooks’ death and reflecting on her global legacy. 3. Breanna Taylor and Georgy Floyd are two African Americans killed by law enforcement in the United States. The timing of their deaths during the Covid-19 pandemic and the symbolism of long-standing, deep-seated, racial trauma led to a racial reckoning in America. The Black Lives Matter Movement (BLM) preceded the deaths of Taylor and Floyd, but the impact of the movement grew even more, following their deaths. BLM was founded in 2013 by three Black women organizers—Alicia Garza, Patrisse Cullors, and Opal Tometi. It started as a media hashtag following the acquittal of Trayvon Martin in the murder of Trayvon Martin and became one of the largest, intersectional, social justice movements in U.S. history. For a movement history, see Barbara Ransby’s Making All Black Lives Matter: Reimagining Freedom in the Twenty-First Century (2018). 4. For an additional resource, please access the Human Rights Foundation report titled “An Epidemic of Violence: Fatal Violence Against Transgender People and Gender Non-conforming People in the United States in 2020.” 5. Donald Trump’s presidency lasted one term, from 2016 to 2020. The class was taught during the first wave of the Covid-19 pandemic and coincided with his presidency. 6. There are a number of recent studies and press articles on this topic. For example, see Darling-Hammond, Sean, Eli K. Michaels et al. 2020. “After ‘The China Virus’ Went Viral: Racially Charged Coronavirus Coverage and Trends in Bias Against Asian Americans,” Health Education & Behavior, Volume 47(6). 7. For public health data on this topic, see, for example, Raine, Samuel, Amy Liu et  al. 2020. “Racial and Ethnic Disparities in COVID-19 Outcomes: Social Determination of Health.” International Journal of Environmental Research and Public Health 17, no. 21: 8115. https://doi.org/10.3390/ ijerph17218115

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8. For an important health humanities perspective on racism and disease outbreaks, reference “I Know Who Caused Covid-19”: Pandemics and Xenophobia by Sander Gilman and Zhou Xun (2021).

References Atkinson, Sarah, Bethan Evans, Angela Woods, and Robin Kearns. 2015. ‘The Medical’ and ‘Health’ in a Critical Health Humanities. Journal of Medical Humanities 36 (1): 71–81. Bailey, Moya, and Whitney Peoples. 2017. Articulating Black Feminist Health Science Studies. Catalyst: Feminism, Theory, Technoscience, Special Issue on Science Out of Feminist Theory Part 2: Remaking Science(s) 3 (2): 1–27. Banner, Olivia, Nathan Carlin, and Thomas R. Cole, eds. 2019. Teaching Health Humanities. New York: Oxford University Press. Bari, Shahidha. 2020. Radical Roots of Self-Care. BBC Radio, Analysis Podcast. Streamed on Saturday, October 31, 2020. Accessed August 1, 2020, from https://www.bbc.co.uk/programmes/m000k7k0 Ben-Moshe, Liat, Rebecca Cory, Mia Feldbaum, and Ken Sagendorf, eds. 2007. Building Pedagogical Curb Cuts: Incorporating Disability into the University Classroom and Curriculum. New York: Syracuse University Press. Berry, Sarah L. 2019. Health and Social Justice Studies. In Research Methods in Health Humanities, ed. Craig M. Klugman and Erin Gentry Lamb. New York: Oxford University Press. Big Think YouTube Channel. 2015. “The Importance of Our Bodies, Ourselves” Interview Featuring Judy Norsigian, Co-founder of Our Bodies Ourselves. Accessed May 2015, from https://youtu.be/QwG_JAY4TEY Boniol, Mathieu, Michelle McIssac, Lihui Xu, et al. 2019. Gender Equity in the Health Workforce: Analysis of 104 Countries. Geneva: World Health Organization. Campo, Raul. 2018. I Am Gulu, Hear Me Roar: On Gender and Medicine. In Health Humanities Reader, ed. Therese Jones, Delese Wear, and Lester D. Friedman. New Brunswick, NJ and London: Rutgers University Press. Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Couser, Thomas. 2018. Introduction—Body Language: Illness, Disability, and Life Writing. In Body Language: Narrating Illness and Disability. New York: Routledge. Couser, Thomas, and Susannah Mint. 2019. The Cancer Journals (1980) by Audre Lorde. In Disability Experiences: Memoirs, Autobiographies and Other Personal Narratives. New York: Macmillan Publishers. Crawford, Paul, Brian Brown, Charley Baker, Victoria Tischler, and Brian Abrams, eds. 2015. Health Humanities. New York: Palgrave Macmillan.

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Crenshaw, Kimberlé. 1991. Mapping the Margins: Intersectionality, Identity Politics, and Violence Against Women of Color. Stanford Law Review 43 (6): 1241–1299. ———. 2020, March 28. “Under the Blacklight: The Intersectional Vulnerabilities that Covid-19 Lays Bare” Featuring, Eve Ensler, Laura Flanders, Ai-jeb Poo, Dorothy Roberts and Alvin Starks. In The African American Policy Form and the Center for Intersectionality and Social Policy Studies. Webinar Recording on YouTube.com: https://youtu.be/OsBstnmBTaI Crenshaw, Kimberlé, and Daniel HoSang, eds. 2022. Under the Blackight: The Intersectional Vulnerabilities that the Twin Pandemics Lay Bare. Chicago, IL: Haymarket Books. Darling-Hammond, Sean, Eli K. Michaels, et al. 2020. After ‘The China Virus’ Went Viral: Racially Charged Coronavirus Coverage and Trends in Bias Against Asian Americans. Health Education & Behavior 47 (6). Diedrich, Lisa. 2007. Treatments: Language, Politics, and the Culture of Illness. University of Minneapolis: Minnesota Press. Dudley, Rachel. 2021. The Role of Feminist Health Humanities Scholarship and Black Women’s Artistry in Re-Shaping the Origin Narrative of Modern, U.S. Gynecology. Humanities 10 (1): 58. Feldshuh, David. 1997. Miss Evers’ Boys. Film. Foster, S.L., and J.  Funke. 2018. Feminist Encounters with the Medical Humanities. Feminist Encounters: A Journal of Critical Studies in Culture and Politics 2 (2): 14. Foster, Frances Smith, Beverly Guy-Sheftall, et  al., eds. 2009. Still Brave: The Evolution of Black Women’s Studies. New York: The Feminist Press at CUNY. Freire, Paulo. 2017. Pedagogy of the Oppressed. 8th ed. London: Penguin Classics (originally published 1968) Freire, Paulo, and Donaldo Maceno. 1987. Literacy: Reading the Word and the World. Westport, CT: Praeger. Grigg, Amanda J., and Anna Kirkland. 2016. Health. In The Oxford Handbook of Feminist Theory, ed. Lisa Disch and Mary Hawkesworth. New  York: Oxford University Press. Gupta, Kristina. 2020. Medical Entanglements: Rethinking Feminist Debates About Healthcare. New Brunswick and London: Rutgers UP. Guy-Sheftall, Beverly. 1995. Words of Fire: An Anthology of African-American Feminist Thought. New York: The New Press. Hammonds, Evelynn. 1994. Black (W)holes and the Geometry of Black Female Sexuality. Differences: A Journal of Feminist Cultural Studies 6: 2–3. Hill Collins, Patricia. 2000. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. 2nd ed (originally published 1990). New  York: Routledge.

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Hine, Darlene Clark, Wilma King, et al. 1995. We Specialize in the Wholly Impossible: A Reader in Black Women’s History. New York: Carlson Publishing. hooks, bell. 1989. Ain’t I a Woman: Black Women and Feminism. Pluto Press, London. ———. 1993. Sisters of the Yam: Black Women and Self-Recovery. London: Routledge. ———. 1994. Teaching to Transgress: Education as the Practice of Freedom. New York: Routledge. Hull, Gloria T., et al., eds. 1982. All the Women are White, All the Blacks Are Men but Some of Us Are Brave: Black Women’s Studies. New York: The Feminist Press. Jackson, Lauren Michelle. 2018. Who Really Owns the ‘Blaccent’? Vulture.com, Published August 24, 2018. Accessed August 20, 2020. Johns Hopkins Coronavirus Resource Center. 2020. Home Page. Johns Hopkins University. Accessed August 21, 2020, from https://coronavirus.jhu.edu/ Jones, Therese. 2019. Moving Pictures: Visual Culture/Visual Activism in the Health Humanities Classroom. In Teaching Health Humanities, ed. Olivia Banner, Nathan Carlin, and Thomas R. Cole. New York: Oxford University Press. Jones, T., M. Blackie, R. Garden, and D. Wear. 2017. The Almost Right Word: The Move from Medical to Health Humanities. Academic Medicine 92 (7): 932–935. Jones, Therese, Delese Wear, and Lester D.  Friedman, eds. 2018. Health Humanities Reader. New Brunswick and London: Rutgers University Press. Kumagai, Arno K., and Monica L. Lypson. 2009. Beyond Cultural Competence: Critical Consciousness, Social Justice, and Multicultural Education. Academic Medicine Journal of the Association of American Medical Colleges 84 (6): 782–787. Kumagai, Arno K., and Thirusha Naidu. 2019. The Cutting Edge: Health Humanities for Equity and Social Justice. In Routledge Handbook of the Medical Humanities, ed. Alan Bleakley. New York: Routledge. Lin, Lana. 2018. The Cancer Journals Revisited. Documentary. Women Make Movies. Lorde, Audre. 1992. The Cancer Journals. San Francisco: Aunt Lute Books. Macedo, Donaldo. 1987. Literacy: Reading the Word and the World. Bergin and Garvey: Westport, CT and London. Metzl, Jonathan, and Dorothy Roberts. 2016. Structural Competency Meets Structural Racism: Race, Politics, and the Structure of Medical Knowledge. AMA Journal of Ethics 16 (9): 674–690. Moraga, Cherrie, and Gloria Anzaldua. 1981. This Bridge Called My Back: Writings by Radical Women of Color. Watertown, MA: Persephone Press. Oppel, Richard A., Gabeloff Robert, K.K. Rebecca Lai, et al. 2020. “The Fullest Look Yet at the Racial Inequality of Coronavirus.” The New York Times 5: 2020.

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Owens, Cooper, and Dierdre. 2017. Introduction: American Gynecology and Black Lives. In Medical Bondage: Race, Gender, and the Origins of American Gynecology. Athens: The University of Georgia Press. Page, Cara, and Susan Raffo. 2010. Healing Justice at the US Social Forum: A Report from Atlanta, Detroit, and Beyond. Accessed September 1, 2019, from susanraffo.com Piemonte, Nicole M., and Arno K.  Kumagai. 2019. Teaching for Humanism: Engaging Humanities to Foster Critical Dialogues in Medical Education. Teaching Health Humanities, edited by Olivia Banner et  al. Oxford University Press. Raine, Samuel, Amy Liu, et al. 2020. Racial and Ethnic Disparities in COVID-19 Outcomes: Social Determination of Health. International Journal of Environmental Research and Public Health 17 (21): 8115. https://doi. org/10.3390/ijerph17218115. Ransby, Barbara. 2018. Making All Black Lives Matter: Reimagining Freedom in the Twenty-First Century. Oakland, CA: University of California Press. Rasminsky, Abigail. 2012. How Storytelling Is Changing the Way Doctors Treat Illness for O, The Oprah Magazine. Ray, Keisha. 2019. The Power of Black Patients’ Testimonies When Teaching Medical Racism. In Teaching Health Humanities, ed. Olivia Banner, Nathan Carlin, and Thomas R. Cole. New York: Oxford University Press. Reverby, Susan. 2002. Feminism and Health. Health and History 4 (1): 5–19. ———. 2012. Ethical Failures and History Lesson: The U.S.  Public Health Service Research Studies in Tuskegee and Guatemala. Public Health Reviews 34 (13). Ross, Lorretta, and Rickie Solinger. 2017. Introduction. In Reproductive Justice: An Introduction. Oakland: University of California Press. Ruger, Jennifer Prah. 2010. Health and Social Justice. New  York: Oxford University Press. Schulz, Amy J., and Leith Mullings. 2006. Intersectionality and Health. In Gender, Race, Class and Health: Intersectional Approaches. San Francisco: Jossey-Bass. Sharman, Zena. 2016. The Remedy: Queer and Trans Voices on Health Care. Vancouver Canada: Arsenal Pulp Press. Steinmetz, Katy. 2020. Q+A: Kimberlé Crenshaw. Time Magazine 21: 2020. Stop AAPI Hate. (2021). About Page. San Francisco State University. Accessed July 23, 2021, from https://stopaapihate.org/about/ The Combahee River Collective. 1995. A Black Feminist Statement. In Words of Fire: An Anthology of African-American Feminist Thought, ed. Beverly Guy-­ Sheftall. New York: The New Press (originally published 1977). The Human Rights Foundation. 2020. An Epidemic of Violence: Fatal Violence Against Transgender People and Gender Non-Conforming People in the United

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States in 2020. Accessed January 8, 2022, from https://www.thehrcfoundation.org/reports/an-­epidemic-­of-­violence The University of Toledo. 2021. University Catalog: University Undergraduate Core Curriculum. Accessed September 15, 2021, from https://catalog.utoledo.edu/general-­section/university-­undergraduate-­core-­curriculum/ Viney, W., F.  Callard, and A.  Woods. 2015. A Critical Medical Humanities: Embracing Entanglement, Taking Risks. Medical Humanities 41: 2–7. Walker, Alice. 1983. In Search of Our Mother’s Gardens: Womanist Prose. San Diego: Harcourt Brace Jovanovich. Wallace-Sanders, Kimberly. 2002. Skin Deep, Spirit Strong: The Black Female Body in American Culture. Ann Arbor: University of Michigan. Wang, Lulu. 2019. The Farewell. Film. White, Evelyn C., ed. 1990. The Black Women’s Health Book: Speaking for Ourselves. New York, NY: Seal Press. Xun, Zhou, and Sander Gilman. 2021. ‘I Know Who Caused Covid-19’: Pandemics and Xenophobia. London: Reaktion Books. Rachel Dudley, Ph.D.  is Assistant Professor of Women’s and Gender Studies and affiliated faculty in Africana Studies at the University of Toledo. Anchored in Black feminist praxis, her research and teaching explore topics at the intersections of gender, race, history, health, and culture. Dudley has been published in Disability Studies Quarterly (2012), Synapsis: A Health Humanities Journal (2020), and Humanities (2021). She  has a forthcoming chapter on health and medicine in a textbook called Feminist Studies: Foundations, Conversations, Applications! (2023).  Dudley is also a member of the Black Feminist Health Science Studies Collective, and she has served as a co-principal investigator  on a National Endowment for the Humanities (NEH) grant, to strengthen the teaching and study of the health humanities.

CHAPTER 4

Viral Pedagogical Narratives: Artistic Expressions of Living During the COVID-19 Pandemic Karen Keifer-Boyd, Michele Mekel, and Lauren Stetz

Introduction In early 2020, we woke up in a dystopia in which there was no normal. All the experiences that we had taken for granted, such as going to work, going to school, and going to the grocery store, vanished. We had to invent strategies to work, to learn, and to obtain necessities amid utter uncertainty—while facing a novel and deadly predator that we could not see and did not understand. This chapter offers up a case study of

K. Keifer-Boyd (*) • L. Stetz School of Visual Arts, The Pennsylvania State University, University Park, PA, USA e-mail: [email protected]; [email protected] M. Mekel Bioethics Program, The Pennsylvania State University, University Park, PA, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_4

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just-in-­ time pedagogical innovations stemming from an art-andhumanities-­ based project developed during those early days of the pandemic. The pedagogical protocols detailed in this chapter tie together the fields of health humanities, art education, and bioethics. Moreover, they feature the flexibility necessary to address various student reactions to the pandemic—from coping with restrictions to dealing with an invisible viral threat. Students and teachers, alike, experienced shock, stress, anxiety, grief, isolation, fear, depression, anger, and more—over the life that had been suddenly stripped away and the unknowns that replaced routines. Despite experiencing these same devastations, educators were called upon to assume affective labour1 in greater intensities than ever before. Given these emergent needs brought to bear by the pandemic, the arts and the humanities provided ideal mechanisms for grappling with the lived pandemic experience. It is well accepted that the arts and the humanities play numerous key roles in daily life, ranging, for example, from expressing shared experiences to contributing meaning to such experiences (Shim et al. 2021). As such, the arts and the humanities enhance human flourishing (Shim et  al. 2021). Part and parcel of such human flourishing are experiencing wellbeing and developing compassion for, empathy with, and caring about others. These goals also reside at the heart of health humanities, which aid in examining, understanding, coping with, and hopefully improving the human condition. What follows are six vignettes of pedagogical innovation that engage with Viral Imaginations: COVID-19, a robust platform launched during self-quarantine, as a gallery and archive of Pennsylvanians’ creative writing and visual art in response to their first-person, lived COVID-19 pandemic experiences. Viral Imaginations, accessible at viralimaginations.psu.edu, is an online, curated gallery, preserved as an archive. Using a case-study approach, project co-founders explored Viral Imaginations curricula by introducing the Viral Imaginations platform into our 2020 curricula, and beyond, as health humanities and bioethics encountered artistic narratives. In doing so, we write as educators in bioethics, medical humanities, art education, and women’s, gender, and sexuality studies with the shared purpose of using a health humanities framework to enhance human flourishing in pandemic times through engagement with diverse, creative expressions of life during COVID-19.

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Viral Imaginations: A Teaching Platform Initiated in Pandemic Times One critical component of Viral Imaginations: COVID-19 is its pedagogical implications within K-16 classrooms during the COVID-19 pandemic. Viral Imaginations’ publicly accessible archive provides an entry point from which students and teachers may engage with academically provocative lessons that can be easily scaffolded across age and ability, resulting in rich conversation, analysis, reflection, and creative expression. When in-person teaching methods were derailed with the closing of schools and rapid, “cataclysmic shifts to emergency remote instruction” using a variety of technologies, such as “Zoom, Google Docs, and Nearpod,” unfolded (Kimmons et al. 2021, 125), the online accessibility of the Viral Imaginations gallery provided a generative and engaging platform for digital pedagogy. In higher education, students frequently complained of “Zoom fatigue” or a decrease in “motivation and less accountability toward completing their work” (Childress 2020, 1A). Calling upon a health humanities orientation, the goal of Viral Imaginations pedagogy is to break through this fatigue by recognizing human realities and creating connections, touching others through creative endeavours. The Viral Imaginations gallery offers a unique experience by exposing students to both trained and inexperienced or “outsider” artists—thus, expanding students’ knowledge beyond the traditional canonical artists that typically dominate school instruction, such as Van Gogh or Monet (Christie’s 2016). Outsider art serves as a “catch-all term” for what Cara Zimmerman, a Christie’s auction house specialist, describes as art made by those outside of the “artistic establishment” (Christie’s 2016, para. 1). Outsider artworks are typically created “below the cultural radar,” avoiding dichotomies of “high and low” brow art, and, in effect, allowing expression to break taboos regarding what art “should” and “should not” be (Dejasse 2019, 155). In addition, Viral Imaginations provides the opportunity for creative historical narratives by the public to reach the public. Filene (2012) describes artists themselves as “outsider history-­ makers,” and, without academic affiliations or expectations, artists can “create passionate histories and revel in the past as a living, sustainable resource” (12). Unlike the adult participants who submit artwork or poetry to the Viral Imaginations website, student participants may or may not be

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artistically inclined or even particularly interested in artmaking. Engaging with a gallery of experiences of both artists and non-artists, students can consider the role of the arts in their lives, whether leading to a professional calling or not. Notably, the COVID-19 pandemic has led to the consideration of the role of the arts in a time of “stress, anxiety, illness” as necessary and vital for mental and emotional wellbeing (Middleton 2020, 41). Nisha Gupta (2020), Assistant Professor of Psychology at the University of West Virginia, lauds art for its ability to serve as “medicine for the soul amid personal or collective struggle” (594). Utilizing the Viral Imaginations gallery, students and teachers at all levels can explore the experiences of others during pandemic times to make sense of their own.

Vignettes on Creating Just-in-Time Pandemic Pedagogy Resources In response to the professional burnout of schoolteachers during the COVID-19 pandemic (Dickler 2021), the Viral Imaginations team designed lessons for K-16 educators to promote class participation through creative activities utilizing the online gallery (Viral Imaginations 2020). The lessons, directly engaging artists’ works within the digital archive, were primarily designed with elementary and secondary teachers in mind, but they can be easily adapted or scaffolded for different ages or abilities. Questioning how COVID-19 has transformed physical spaces and movements, “Viral Imaginations: COVID-19 Cartography” (Stetz 2020a), encourages elementary learners to consider their surroundings through the exploration of the works by Liana Glew (2020) and Claudia McGill (2020). After introducing K-6 students to the concept of mapping, reviewing political, physical, and roadmaps, the lesson invites students to reflect on artistic mapping. In “Floor Plan,” Glew (2020) reveals her path through her small apartment during quarantine with red thread in her hand embroidery. Students also reflect on McGill’s (2020) image, “I Hope,” an acrylic painting of her home and the people in it, rendered in vibrant colours that symbolize safety and gratitude. Students are encouraged to create maps by considering where they travelled throughout the pandemic, considering what areas were off-limits using found household objects or recycled materials. Other elementary lessons, such as “Viral Imaginations: Draw Chat” (Keifer-Boyd 2020a), engage students in collaborative drawing activities, creating conversation through imagery.

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Teachers begin the lesson by asking students to find personal connections with the artwork within the Viral Imaginations gallery. After identifying works, students use images, symbols, dynamic markings, text, and colours to create a shared visual expression of pandemic times. Considering artists as historians, the lesson invites students to contemplate what they would like others to know about their experiences 100 years from now. The lessons devised for secondary learners from the Viral Imaginations gallery focus on developing a deeper understanding of historical context and visual analysis of works of art. Drawing from images of the past, “Viral Imaginations: Engaging with Art History” (Stetz 2020b) compares and contrasts art historical images, such as those created during the Spanish Influenza of 1918 and the AIDS epidemic of the 1980s and 1990s. Comparing provocative imagery, such as Edvard Munch’s “Self-Portrait with the Spanish Flu” (1919), to portraits on the Viral Imaginations website, students consider how artists portray themselves during times of illness and fear, including depiction of their mental and emotional states. Drawing from Keith Haring’s (1989) “Ignorance = Fear/Silence = Death,” this lesson challenges students to consider the U.S. government’s response to AIDS compared to its COVID-19 response. More startling is David Wojnarowicz’s (1988–1989) “Untitled” (Falling Buffalo), a photomontage created after the artist’s HIV diagnosis, in which buffalo are depicted falling off a cliff, drawing parallels between the nineteenth-­ century slaughtering of bison in the United States and the AIDS crisis. Particularly, students might consider the concept of neglect or marginalization of minority populations within a global pandemic. Images, such as those of Haring and Wojnarowicz, invite students to think about art as a form of activism and a vehicle for social change. While activist art is not frequently “considered healing or beneficial for mental health,” some researchers (Kaplan 2007) see it as a “necessary goal for art therapy” (Gwinner 2016, 9). Therefore, the concept of empowerment through the arts can ameliorate feelings of hopelessness by providing agency. Looking at Marcel Breuer’s (1927–1928) “Club Chair,” comprised of chrome-­ plated tubular steel and canvas, students examine the impact of health on creative design, questioning how an agenda of sanitation after the Spanish Flu revolutionized creative thinking. In this sense, students become aware of the potential of symbiotic relationships between arts and health.

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Vignette: Innovating Physically Distanced In-Person, Hybrid, and Virtual Pedagogy In the spring of 2020, “school closures due to COVID-19 impacted at least 124,000 US public and private schools,” with almost all states urging or requiring schools to “remain closed through the 2019–2021” period (Pattison et  al. 2021, 376). By March of 2021, “168 million children globally” endured nearly a year of school closures (UNICEF 2021, para. 1). According to Ghosh et al. (2020), despite being “minimally susceptible” to early strains of COVID-19, children were “hit the hardest by the psychological impact of this pandemic” due to “school closures, lack of outdoor activity, [and] aberrant dietary and sleeping habits” (226). Such changes to routine often “promote[d] monotony, distress, impatience, annoyance and varied neuropsychiatric manifestations” (Ghosh et  al. 2020, 226). The artistic responses of youth throughout the COVID-19 pandemic offers insights into their unique experiences and struggles. Responses to Viral Imaginations’ call for student participation began to trickle in through the creative activities of children learning in their residences. For example, in 2nd-grade virtual learner Zoya Baloch’s “Fun Home” (2020), the child depicts a map of her house in response to the elementary “COVID-19 Cartography” lesson offered within the Viral Imaginations Resources section. Using mixed media of acrylic paint, yarn, sticky notes, and cardboard, Baloch employed “bright colors” to portray her house that she describes as a “little more creative than my real house” (2020, para. 1). Although depicting a playful vision of pandemic life, Baloch’s imagery emphasizes the chaotic nature of home arrangements, with tight living quarters and overlapping spaces and figures. Engagement with the Viral Imaginations gallery also came from secondary students who could easily navigate and submit to the website (with parent/guardian permission). Several students submitted their work during periods of remote learning, including Shreya Srinivasan. Srinivasan’s (2020) “Dressed for Zoom Meeting” is a pencil drawing of the back of a girl’s head with a long, black braid adorned with gold sequins; the girl is depicted wearing a yellow dress with black polka dots. In her description, Srinivasan emphasizes her desire to dress for class to show respect for her work and her teachers. In this time of disrupted routines, Srinivasan demonstrates how she maintained a sense of normalcy by dressing up for class. In the winter of 2021, Viral Imaginations began to receive submissions from students and teachers who had settled into socially distant in-person

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learning and hybrid model instruction. Southern Columbia High School art teacher Casie Baker created her own lesson from the Viral Imaginations website, involving 35 students ranging from 10th to 12th grades in her 2-Dimensional Design and Senior Studio. Inviting students to navigate the Viral Imaginations website, students spent a class period looking at art, engaging in discussion, and brainstorming ideas for creating visual artworks that reflected their personal pandemic experiences, such as virtual learning, mental health, and nature walks. Students took approximately a week and a half to create their final designs. Due to the open structure of Baker’s lesson, student responses varied largely in medium as well as subject matter. High school senior Jay Maurer (2021) utilized digital drawing to portray the sentiment of fear and hopelessness, depicting a figure atop the Earth encompassed in flames in his image titled “Spontaneous Combustion.” In “Time to Reflect,” Maylan Creasy (2021) of Columbia County portrays a girl’s reflection in a handheld mirror surrounded by slashes of gold paint and colourful branches. Creasy (2021) describes her time in quarantine as a period to reflect on life and the person she is, pointing out that she did not take this time “for granted.” In “Tchaikovsky and Solitude” (2021), an oil pastel landscape in a seemingly surreal setting between outer space and vine-covered columns on marble flooring, featuring a lonely, pink birthday cake with a single candle, the anonymous student artist wrote that “being alone can be beautiful, yet cold.” Vignette: Fostering Collective Healing Particularly moving was a submission from Shannon Spollen’s class of 10th-grade honours English students at Clayton A. Bouton High School in the Voorheesville School District in New York. As an English teacher, Spollen presented her class with a unique approach to the Viral Imaginations gallery, beginning by examining the word “viral,” a homophone, and discussing its multiple interpretations. After exploring the Viral Imaginations website, Spollen shared a PowerPoint presentation featuring works from the gallery without titles or descriptions, inviting students to title and describe the pieces themselves. Following the exercise, Spollen shared the titles and descriptions of the pieces, comparing the students’ ideas to those described by the artists themselves, emphasizing human connectivity. Spollen entreated students to respond to the Viral Imaginations project through writing or by creating their own visual artwork. Particularly dominant were themes of mental health describing

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struggles with the monotony of routines. In “Neverending Cycle” (2020), a student depicts a cycle of exercise, schoolwork, and work. Another piece titled “COVID Confusion” portrays the “conflicting messages about masks and the unknown science of COVID-19” through the juxtaposition of a computer, a dumbbell, hand sanitizer, question marks, and a crossed-­ out red circle around a group of friends (unidentified student artist, 2020). The student artist (2020) writes: “in the beginning I found I was spending a lot of time in bed because I wasn’t able to do anything or see anyone.” Conveying feelings of isolation and being trapped, many students revealed struggles with their bodies, illustrating pressure to conform to a socially idealized figure, and count calories, as revealed in a student’s image titled “The Quarantine Diet” (2020). In “The Quarantine Diet” (2020), the artist describes well-intentioned efforts to become healthier gradually dominating her mind, causing her to feel overwhelmed with stress and guilt. Other students focused on the emotional escape of physical activities and fitness. “A Solo Run Away from Being Solo” (2020) presents the use of running as a coping mechanism, noting the calming rhythm and movement that permits entrance into a focused state. Another student examined their gender identity in a time when the use of preferred gendered pronouns made their way into many Zoom classrooms. The artist describes the time spent reflecting on their gender and whom they want to be when they no longer face the pressures of getting ready for school. In a pen-and-ink drawing titled “Scribbling Thoughts” (2020), a student describes the process of thoughts and worries leaving the body through writing, providing a sense of clarity. This example particularly highlights the creative process as a device for mental and emotional processing. Most notably, the class participated in conversation and creation of written and visual artworks as a collective, assembling finished works into a PowerPoint to share with others, creating a space for healing, growth, and understanding. As the COVID-19 pandemic has taken a toll on both children and adolescents, art has provided an outlet to engage with mental health concerns, inviting students to contextualize their feelings and emotions within this historical moment. According to Gwinner (2016), the “weaving together” of practices of “arts, therapy, and health” holds great potential for meeting the “psychosocial, self-help and mental health educational needs of young people” (16). Publicly accessible platforms, such as that of Viral Imaginations, provide venues for creative expression, conversation, understanding, and the formation of community during difficult times—bring the health humanities to life in real time.

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Vignettes on Curating as Visual Analysis Pedagogy Incorporation of the Viral Imaginations art repository in a college course that prepares students to become K-12 art teachers focuses on instilling the power of visual analysis collectively developed into data visualizations. Preservice teachers applied data visualization strategies and tools inspired by artists, such as Chris Jordan, Nina Katchadourian, and Maya Lin, to identify and visualize emergent themes in the Viral Imaginations gallery and consider how these creative responses offer insights into the needs, hopes, and desires of living during a global pandemic. For artist Chris Jordan, data is material, structure, and inspiration for his art. Jordan (2008) describes his artistic process: “When 300 million people do unconscious behaviors, then it can add up to a catastrophic consequence that nobody wants, and no one intended. And that’s what I look at with my photographic work.” He digitally scans everyday objects from bottle caps to Barbies, duplicates them thousands of times, and arranges the multiples of data into a larger image, a larger statement. His tools are a scanner, photo manipulation apps, and programming code. In Jordan’s series, “Running the Numbers: An American Self-Portrait (2006– Current),” the digital art is presented so that the viewer interacts by touching (if a touch screen) or holding the cursor on the image, which zooms in to show close-ups. For example, zoom in and there are 106,000 aluminium cans, the number used in the United States every 30 seconds. Zoom out and the viewer sees Seurat’s (1884) painting “A Sunday on La Grande Jatte.” Jordan employs themes, such as the near versus the far and the one versus the many. Through his art, he hopes to “raise some questions about the roles and responsibilities we each play as individuals in a collective that is increasingly enormous, incomprehensible, and overwhelming” (Jordan 2008). For example, photographs of 200,000 packs of cigarettes, equal to the number of people in the United States who die from cigarette smoking every six months, are arranged by Jordan to resemble Van Gogh’s 1885–1886 painting “Skull of a Skeleton with Burning Cigarette.” Jordan’s work provides examples of how overwhelming and incomprehensible COVID-19 statistics of the rapid rise in cases, hospitalizations, and deaths can be understood from a collection of images in the Viral Imaginations archived gallery that visualizes pandemic disruptions to physical and emotional closeness with the necessity to wear masks and keep six-feet distant from each other.

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Nina Katchadourian’s (2005) artworks are maps and charts that reorganize the visual icons that sell products. Her arrangement in “Genealogy of the Supermarket” (2005) elicited possible family lineages, a remix to create a counternarrative, speaking back to intersections of racism, sexism, and homophobia. Her work offers an example of how meaning is evoked by context, juxtaposition, and critical connections. Such mapping is not additive, dualistic, or linear but rather relational spatial creations that can, with guiding prompts, make visible relationships that foreground questions of intersubjectivity and collective responsibility. A prompt towards such goals asks: What are the relationships between politics of location and knowledge in terms of accountability/responsibility, and the porousness of inside/outside of the body? The curation of artworks on the Viral Imaginations website provides a critical awareness of the body, as well as the experiences of communities in a time of personal and collective trauma and turmoil. Among the more than 350 visual and literary artworks as of September 2021, the relationship to the body drastically changed in the early days of the pandemic from fears of proximity to other bodies to fears of isolation from long-term confinement, distancing, and masking. Through the artists’ identification with individual counties within Pennsylvania, archive researchers can observe trends within regional geographies. Where we are situated, the place, our positionality, our location during the pandemic impacts the experience of living during these times. Moreover, Viral Imaginations, following exemplars like Nina Katchadourian’s artworks, could be considered socially engaged participatory art with curation as the contemporary art form; when conceptualized in this way, it could contribute to developing human potentials for dialogue and empathy, as well as personal and collective healing. Such potential drives this case-study inquiry of facilitating collective visual analysis to form artistic data visualizations intended as an aesthetic, visceral experience of data, not necessarily to enhance the communication or comprehension but, rather, to evoke the emotional experience of data for viewers and to generate new questions or hypotheses (Li 2018; Slocum et al. 2005). Artist Maya Lin, most known for the Vietnam Veterans Memorial in Washington, DC, makes art of data in which the form of the work invites viewers to interact with the artwork, and, in so doing, provides intimacy and emotional engagement with the vastness of a data set, such as individual lives lost in the Vietnam War. Lin’s (2003) digital memorial “What’s Missing” is about the disappearance of species, habitat degradation, and loss. For Viral Imaginations visual analysis, Lin’s work provides examples

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of how bringing together individual narratives arouses powerful, affective viewer reactions. Vignette: Examining Pandemic Realities of Sustainability Needs—Care, Water, Food, Shelter, and Cost The workshop format provides opportunities to develop and pilot pedagogical approaches for facilitating visual analysis with the Viral Imaginations archive of images. For example, in a workshop as part of the Studio for Sustainability and Social Action (S3A) symposium in April 2021, participants analysed how the more than 200 works of art in the Viral Imaginations gallery as of that date addressed the United Nations’ sustainable development goals of care, water, food, shelter, and cost—all issues and themes that have become ever more urgent in living with the COVID-19 in the air shared within personal spaces and on a global scale. For example, “How We Coped” by Patricia (2020) calls attention to the unsustainable plastic packaging of food. Shelter during the pandemic has been a considerable issue conveyed in the art archived in Viral Imaginations, as well as cost during the pandemic—to humans, the environment, culture, and the economy. In the S3A participatory visual analysis of Viral Imaginations workshop, a guiding question posed was: “What kind of arts and culture sustain us through social isolation while bolstering a future in which we want to live?” To understand the role of the arts during the pandemic, workshop participants looked at the art as a collection of visceral narratives across the pandemic’s trajectory. The themes in Viral Imaginations archived gallery provide insights into mental health deterioration, daily struggles with isolation, racial inequities, and recognition to not take for granted care, water, food, and shelter. Using Google slides as the platform, workshop participants clicked on the link provided for the visual activity and met in the publicly shared slides.2 The first slide outlined the United Nations’ sustainability themes to guide analysis of the Viral Imaginations data set of visual art created during the pandemic. Links to the Viral Imaginations data set, COVID-­ tracking dynamic statistics, and the U.N.  Sustainability Goals (United Nations n.d.) provided the resources to collectively engage in visual analysis. The slide also included an outline of the visual analysis strategy to engage in guided, real-time, participatory visual dialogue to conceptualize pandemic realities of care, water, food, shelter, and cost. Facilitation introduced the following process:

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Select images from the Viral Imaginations gallery (https://viralimaginations.psu.edu); Engage in visual analysis by dragging, dropping, resizing, arranging in relationship to others’ selections, hyperlinking to the image’s description in the gallery, and integrating relevant selection(s) from the gallery into emergent thematic areas in an interactive, online curation module; Add connector lines and text coding to show threads, lineages, directions, and/or patterns; and Partake in reflection with all workshop participants about their selections, thematic linkages that emerged, and insights about fear, hope, desire, and action in relation to the sustainability goals of care, water, food, shelter, and cost derived from the real-time, community curation process.

Figure 4.1 shows the collective gathering of artworks from the S3A workshop and what follows are excerpts from the inquiry generated from the selective works viewed in relation to each other. Each slide becomes a curation of art that offers deep insights into the collective inquiry.

Hoarding is not a sustainable action. Mindful of what is important to sustain life for all.

Fig. 4.1  Workshop participants’ curation of Viral Imaginations artworks related to food sustainability issues includes work by Isabella Del Signore (2021, top left), Anonymous (2021a, b, top middle), Elaine Lacina (2020, top right), Anonymous (2020, bottom left), Zena Tredinnick-Kirby (2020, middle), Patricia (2020, bottom middle), and Rebecca Morris (2020, bottom right)

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The workshop participants’ curation focused on each of the themes of the S3A symposium in which thumbnail image of the art (i.e. the data) linked back to the full-scale, high-resolution digital image of the art within the online gallery, along with title, description, dimensions, and medium. One participant discussed her curation and visual analysis of Viral Imaginations submissions in relation to food sustainability goals as follows: I started with the photograph of the barren shelves at the supermarket, titled “Pandemic Shopping,” submitted to Viral Imaginations by Elaine Lacina. I can recall at the beginning of the pandemic when we were all not sure what direction things were going and everyone started hoarding food to make sure they had enough.

Because most people in the United States do not know how to forage for food or have the sustainability of their own gardens and means to preserve fruits and vegetables for non-growing seasons, the pandemic brought out hoarding behaviours. In attempts to alleviate anxiety and panic from fear of not having food, toilet paper, and other products, individual hoarding escalated mass panic as such fears created the reality of empty grocery shelves. Hoarding is not a sustainable action. The empty grocery store shelves related to another artwork about grocery shopping titled “Mindset Shopping.” The artist, Isabella Del Signore (2021), describes: The jars on the shelves hold negative emotions that are ready for purchase. The Magic 8 Ball on the head in the grocery cart symbolizes fate and how it is our hands to choose the mindset we want to indulge to get through the pandemic. In the United States, many people’s lives revolve around shopping and buying things they do not need. The empty shelves in the photograph “Pandemic Shopping” (Lacina 2020) and the panic jar in the “Mindset Shopping” (Del Signore 2021) painting brought together within the theme of food sustainability illuminated how individual greed will deplete resources and to be mindful of the need to work together to sustain life for all. Vignette: Identifying Bioethical Themes in Pandemic Art The Penn State Bioethics Colloquium is an interdisciplinary cohort of graduate-level students and faculty interested in bioethics from across the

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University’s multiple campuses. In a workshop for the Colloquium, the group generated bioethical themes they envisioned as relevant to shared experience of the pandemic yet guided discovery of nuances and differences in living during the pandemic period. Bioethics raises moral questions about biological and relational matters of and among lifeforms situated in environments, governing policies, and social practices. Themes identified by the group as bioethical concerns included: freedom, structural injustice, what and who is absent, more/other than human, truth, virus depictions, our relationship to our body, life/worldview changes, time itself, fears, needs, and desires. The theme of hope included art that showed compassion, a painting of a Mallard duck in a radiating colourful pond (Bollt 2020a) with the interpretive text that “hope is a thing with feathers,” and a painting of a four portraits of comic superheroes wearing masks (see Fig.  4.2). In the middle of the three-­ quarter line-up of superheroes is a masked nurse. One of the visual analysis workshop participants wrote “We are ALL our own heroes” under the acrylic painting, titled “Not All Heroes Wear Capes” by Stella Talamo

Fig. 4.2  Workshop participants’ curation of Viral Imaginations artworks related to hope includes work by Anne Lavo (2020, top right), Amy Frank (2020, top middle), Claudia McGill (2020, top right), Christina Fridman (2020, bottom left), Oana Bollt (2020a, middle), Oana Bollt (2020b, bottom middle), and Stella Talamo (2020, bottom right)

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(2020) on the hope-themed curation of artworks. With the overarching theme of experiences over time, subtopics emerged from the curation of art based on the trajectory of the pandemic, such as confined, lonely, recovering from dark thoughts, attempting to hold together apart, and escape from reality. Whether workshop participants begin with themes provided by the facilitator, such as sustainability goals, or generate themes according to specific disciplinary inquiries, such as bioethics concepts, or begin by looking at the art to identify emergent themes, the process of curation can be conducted by children, youth, adults, non-artists, scholars, or any group (Keifer-Boyd 2020b). Given research for many scholars, outside the arts, typically does not involve visual analysis, there may be initial hesitancy due to concerns about lack of expertise. For example, at the Bioethics Colloquium workshop, professors, and graduate students, who are disciplinary experts in fields that do not include the arts, were hesitant to look at the art to discover themes. Instead, they drew on their expertise in bioethics and health humanities to develop themes to search for the themes in the Viral Imaginations archive. Moreover, many were more comfortable selecting creative writing in the Viral Imaginations archive in relation to the themes, and less conversant with interpreting the visual art in the archives in relation to concepts. Bioethics Colloquium participants were energized in constructing a list of bioethics concepts, which then motivated their curiosity to view the art and creative writing to discover whether people addressed bioethics themes, and, if so, how the artistic expressions about living during a pandemic conveyed the themes within the Viral Imaginations gallery.

Poetry and the Pandemic In a COVID-era interview, Alice Quinn, former and long-time poetry editor of The New Yorker, stated that poets have donned the mantle “of the witness in culture” in this time, as poetry offers up a way “to navigate this [epoch] of global crisis” (PBS News Hour 2020). An apt assessment recognized by academics and journalists, alike, the power of poetry was tapped as a creative device for grappling with the all-encompassing and disruptive experience of pandemic existence (e.g. Pelley 2021). Up to the task, poetry provides both writers and readers insights for wrestling with uncertainty, processing difficult emotions, and finding meaning—and even healing—amid the seemingly incomprehensible.

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Numerous studies have demonstrated poetry’s benefits as a tool for healing and wellbeing (e.g. Pelley 2021; Stuckey and Nobel 2010). For example, studies using functional magnetic resonance imaging (fMRI) data have established the differential impact of reading and writing poetry on areas of the brain involved in pleasure, introspection, empathy, focus, and creativity (e.g. Pelley 2021; Zeman et  al. 2013). Of particular value— especially during the anxiety, uncertainty, dislocation, powerlessness, and upheaval of the COVID-19 pandemic—poetry • allows for reclaiming agency amid feelings of helplessness and disempowerment; • enables emotional expression and processing; • bolsters the ability to cope with stress; • stimulates pleasurable emotions; • increases empathy, emotional awareness, compassionate presence, and mindfulness; and • engages the brain in periods of boredom (e.g. Pelley 2021; Stuckey and Nobel 2010). Moreover, as a typically shorter literary form, poetry fits well into spaces of fragmented time and attention, such as those the pandemic brought in its wake. And, if preserved in writing or otherwise recorded, poetry embodies a narrative archival role. Specifically, as documented creative accounts, pandemic poetry enables witnessing and examination of individuals’ identity-based, lived experiences to engage in robust and inclusive discourse that captures the storyteller’s voice, perspective, and intersectionalities, which are often missing from historical accounts. Vignette: Building Community, Empathy, and Agency Through Poetry in Pandemic Pedagogy Part and parcel of the disruptions wrought by COVID-19, college students’ in-person educational modalities and even living arrangements were abruptly and significantly impacted, as restrictions included transitioning to online learning from home environments coupled with shelter-­ in-­place orders. As a result of this Covidian cascade, stress, depression, and isolation among young people increased substantially (e.g. McClurg 2020; Walsh 2021).

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To address these overarching student impacts, and simultaneously continue content-based learning in undergraduate-level bioethics courses, a multi-prong assignment based on poetry was constructed.3 Refined over the course of four pandemic semesters, this assignment, undertaken by approximately 125 enrolled undergraduate students, successfully provided domain-specific knowledge, individual reflection and improved coping, and peer-based knowledge sharing. The assignment, which was first instituted during the transition to remote learning, was given on a mandatory-­ but-­ungraded basis. In subsequent pandemic semesters, it was transitioned into a graded, standing course assignment. The class sizes in which the assignment was deployed ranged from 6 to 32 students. Assignment Objectives

Calling upon works in the Viral Imaginations gallery, as well as other student-­selected primary sources, the assignment centres around the following learning objectives:

• reflecting on creative narratives by viewing visual art and reading creative writing in Viral Imaginations gallery and considering the bioethical strands that arise from the selected artworks and associated written materials (i.e. title, description, and artist statement); • learning about a self-selected aspect of the pandemic and identifying inherent bioethical issues; • processing emotions and pandemic experiences, reclaiming a sense of agency, and alleviating stress by exploring a creative coping mechanism; • enhancing empathy, emotional awareness, and compassionate presence; and • bolstering distance-learning course/community cohesion via the sharing of subject-matter knowledge, poetry, and individual perspectives. These objectives were assessed based on open-ended, in-class discussions and written reflections. Moreover, the majority of the assignment’s objectives dovetail with overall course objectives, including:

• developing students’ methodologies;

knowledge

of

bioethical

tools

and

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• fostering students’ ability to identify, evaluate, and articulate bioethical issues; and • providing exposure to health humanities materials and modalities in bioethical analysis. Assignment Design The multi-part assignment begins by having students select from the creative narratives housed and archived in the Viral Imaginations gallery (Viral Imaginations 2020). Students are instructed to select three pieces of visual art and three pieces of creative writing, and then to reflect, in writing, on these chosen works, as well as the included descriptions and artist statements. In these reflections, students are asked to identify any bioethical issues raised. This step serves various purposes. First, it exposes students to how others express themselves creatively during pandemic times. Second, it opens students to empathetic consideration of the works as first-person artistic narratives from pandemic life. And it requires students to apply their bioethical knowledge to analyse these narratives. Having primed students for their own creative reflection through the initial portion of the assignment, the second stage instructs students to select an article at the intersection of the COVID-19 pandemic and bioethics from a reputable academic or journalistic source. Students then read their chosen article to gain new subject-matter understanding of a COVID-related topic and consider the bioethical issue or issues raised. Students then proceed to an assisted creative writing reflection on the pandemic through one of two prescribed methods. They may engage in a found-poetry process by visually scanning their article, selecting a word or phrase that stands out to them, and continuing this process until they have created a poem with which they are satisfied. Another option is excerpting a line from the article and constructing a poem that contains that line. This multi-part step also embodies multiple functions. It allows students to apply their bioethical analysis skills in article selection and review. It empowers students to engage in self-directed learning about an aspect of the pandemic of interest to them. And, finally, this step fosters creative reflection on the pandemic in a supported, or prompted, manner that seems less foreboding. The assignment culminates with a “Pandemic Poetry Slam.” Student attendance is mandatory, but participation in the slam is voluntary. Students opting to participate in the slam orally provide the article’s publication details (i.e. author, title, publication venue, and date), briefly

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summarize the article’s content, denote the bioethical issue(s) raised, specify which poetry method they selected, and then read their poem aloud to the class. Following an opportunity for all student volunteers to share, the class engages in an open dialogue about the assignment and the poetry-slam experience. Moreover, all students are encouraged to consider submitting their poem to Viral Imaginations, so that their creative narrative can also be preserved. Over the course of the semesters, a few students have done so. As an example of such a student work, Ashley Hibbs (2021) wrote “The Vulnerable Become More”: The Vulnerable become more More resilient, more experienced More determined than ever before The Vulnerable become more More than a number, more than a face More than a tragedy, more than a news story, The Vulnerable become more More than their history, more than too poor More than compliant, more than you’re ready for Because while the powerful go on living, The Vulnerable become more.

In her description of the work, she stated: “This poem is inspired by a black-out poem I had developed from a news article. With a focus on the theme of vulnerability and more, this poem acts as a ‘call-to-action’ to empower those considered to be vulnerable” (Hibbs 2021). The poem and this description reflect her bioethics coursework on how the pandemic exacerbated vulnerabilities especially present in black and brown communities due to systemic injustice. This demonstrates mastery of core assignment objectives, including identification of bioethical issues and increased empathy. In her artist statement, Hibbs (2021) self-identified as a “college student studying public health who recently started using art to express feelings associated with coursework and everyday life.” This self-identification statement explicitly captures internalization of the power of engaging in creativity—in this case poetry—to explore emotions and cope with stressors—another key assignment objective.

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Vignette: Assessing the Generative Impact of Viral Imaginations During four semesters of teaching the pandemic poetry assignment detailed above across multiple undergraduate bioethics courses, all students completed it. Despite being voluntary, the majority of students— across all courses and semesters—opted to share their poems and article-based knowledge during the poetry slam. Universally, the audience of peers (and instructor) was engaged, supportive, and celebratory of the works presented and personal narratives shared, as demonstrated by clapping, snapping, hooting, cheering, using Zoom icons, and writing congratulatory notes in the chat after each reading. In their written reflections on the assignment, students communicated some oft-repeated themes. Many students, most of whom were pre-­ medicine, pre-health professional, or science majors, described being sceptical at first, believing that they “did not enjoy writing” and were “not creative.” In the end, however, nearly all students reported enjoying the assignment, having a new appreciation for the role of creativity, and being surprised with their own abilities. Numerous students highlighted the staged and supported approach taken in the assignment as effective to reduce their stress about the exercise, put them in the “‘right’ mindset,” allow them the agency to learn more about a pandemic issue of interest, and offer a “safety net” for creative writing. Moreover, students stated that the exercise encouraged them to reflect on their own lived pandemic experience, and to express and explore emotions that they had been keeping bottled up inside. Several students noted that they were surprised by the sense of calm they felt after completing the assignment. In addition, students remarked that the portions of the assignment that included studying art in the Viral Imaginations gallery and listening to other students share their works during Pandemic Poetry Slam increased empathy for others during the crisis. Additionally, students disclosed that, following the poetry-reading session, they felt more connected with their peers and perceived an enhanced sense of class community and cohesion. This last response was particularly critical to maintaining a positive community construct in virtual classrooms during a time of involuntary physical isolation. The poetic expression and contextualizing commentary students shared in selected-article knowledge transfer and in the reading of their poetic works established an ethos of personal exchange often present in in-person seminar courses. These genuine interactions and disclosures allowed students to get to know one another on a more in-depth

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level, despite geographical distance. Also, through the presence of student body diversity representing numerous intersectionalities, the works— recited by their authors in the authors’ situational loci—brought narrative ethics and health humanities to life for the class—as authors’ identities, voices, tone, and inflections were all present, adding rich layers of content to the shared poems and information.

Conclusion: Viral Imaginations Health Humanities in Application These Viral Imaginations pedagogy vignettes highlight both the robust nature and the adaptability of Viral Imaginations archival gallery of creative pandemic reflections. These vignettes also demonstrate how, in a time crisis, art brings us back to our core of humanity. As educators in pandemic days, Viral Imaginations also helps us to pivot with regard to how we engage with students, how we provide affective labour, how we create coherence amid crisis, and how we aid students in developing empathy. For example, the intern team for the Viral Imaginations project recognized affective labour in creating a video to show appreciation to the faculty member overseeing the Viral Imaginations project and the interns (Del Signore et al. 2021). The team of interns stated: “This semester has been extremely hectic for all of us, and you have showed up for us in countless ways to make it better” (Del Signore et al. 2021). Art serves as a strategy to “express and evaluate the subjects’ sense of self” through recognition of the subconscious projected within the imagery produced (Lin et al. 2020, 1). According to Kozinets et al. (2017), museums or galleries “provide a space for identity work” beyond narcissism to consider the “pursuit of profound reflection and communication” (1). Particularly, art educators, art therapists, and art historians recognize the tremendous significance of creating self-portraits that define and convey more than the artist’s likeness and speak to the connectedness of humankind. Likewise, the diverse artwork in the Viral Imaginations gallery invites visitors to see their own reflections in the works of children, youth, adults, and elders; and beseeches them to recognize human experiences and emotional responses within works of art and poetry. People around the world continue to experience the tragic and often-­ durational effects of the COVID-19 virus, and researchers recognize that “historical forces shape the social trajectories of family, education, and

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work,” as well as behaviour (Elder 1998, 2). As social, psychological, and physical health consist of a “tapestry of intertwined developmental trajectories,” societal and structural shifts profoundly impact the development of children and youth, who experienced significant life disruptions (Benner and Mistry 2020, 236). Viral Imaginations serves as a health humanities– based artefact of digital archaeology, the remains of a time in which time stood still, and a site of excavation of the realities of human pleasure, pain, fear, perseverance, and hope. As such, excavation of the Viral Imaginations archive offers numerous pedagogical potentials. Living in this era of uncertainty with multiple crises related to health, environment, racial injustice, and the economy, the arts are increasingly necessary to human wellbeing, as they provide sensory ways of knowing and understanding, and as they effect and enable us to process our emotions, attitudes, decisions, and behaviours. Viral Imaginations provides specific insights into how the arts and humanities are ever more necessary to human flourishing and collective healing—especially during this time of global crisis. Our case study of Viral Imaginations pedagogy, presented as six vignettes, yields key insights. First, students and teachers need to express, discuss, and learn how others are coping with lives turned upside down due to the pandemic. The Viral Imaginations gallery grows with new work regularly added from ongoing submissions, and these submissions depict issues and perspectives of the moment as the pandemic evolves. As an archive, Viral Imaginations houses a historical narrative of the trajectory of experiences to engage students and teachers in analysis, dialogue, and reflection on life changes and speculations on the future. Second, viewing art and reading poetry and other creative writing forms inspires artmaking, which has healing power in the process of making visible the impact of our pandemic experiences and deep insights about living for more than a year in COVID-19 pandemic conditions. Such insights through artmaking help transform the challenges of living in a pandemic into knowledge about oneself, which helps us figure out and then address needs, fears, and desires. Emotional trauma, when silenced and internalized, can fester and manifest into anger, depression, and anxiety. When shared, people recognize and find comfort in not being alone in their feelings. Such connection and understanding embody health humanities in application.

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Notes 1. Affective labour is typically unacknowledged and unpaid women’s work to sustain wellbeing and calm in co-workers and students while suppressing their own anxieties, challenges, and needs (Whitney 2018). 2. The S3A workshop activity site is at https://tinyurl.com/au95p8dc 3. A version of the lesson plan for K-12 students is available on the Viral Imaginations website, and the assignment used for undergraduate students is available upon request (Mekel 2020a, b).

References Anonymous. 2020. Eat, Sleep, Repeat. Paint. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-­ submissions/eat-sleep-repeat/ ———. 2021a. Still Life #COVID-19. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/ still-life-covid-19/ ———. 2021b. Tchaikovsky and Solitude. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-­submissions/ tchaikovsky-and-solitude/ Baloch, Zoya. 2020. Fun Home. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/1625/ Benner, Aprile D., and Rashmita S. Mistry. 2020. Child Development During the COVID-19 Pandemic Through a Life Course Theory Lens. Child Development Perspectives 14 (4): 236–243. https://doi.org/10.1111/cdep.12387. Bollt, Oana. 2020a. On the Pond. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/ on-the-pond/ Bollt, Oana. 2020b. Azalea. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/azalea/ Breuer, Marcel. 1927–1928. Club Chair (Model B3). Chrome-Plated Tubular Steel and Canvas. 71.755 cm × 78.105 cm × 71.12 cm (28 ¼ in × 30 ¾ in × 28 in). The Museum of Modern Art, New York, NY. Accessed from https://www.moma. org/collection/works/2851 Childress, Rick. 2020, November 26. ‘Earthquake Inside of a Tornado.’ Anxiety, Isolation Mark COVID Semester for KY Students. Lexington Herald-Leader, Lexington, KY. Christie’s. 2016. What Is Outsider Art?” Accessed September 14, 2016, from https://www.christies.com/features/What-­is-­Outsider-­Art-­7659-­3.aspx

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Hibbs, Ashley. 2021. The Vulnerable Become More. Poem. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/ written-submissions/the-vulnerable-become-more/ Jordan, Chris. 2008. 2006–Current. Running the Numbers: An American Self-­ Portrait. Chris Jordan Photographic Arts. Accessed from http://www.chrisjordan.com/gallery/rtn/#about Kaplan, Frances. 2007. Art Therapy and Social Action. Philadelphia: Jessica Kingsley Publishers. Katchadourian, Nina. 2005. The Genealogy of the Supermarket. Framed Photographs and Wood on Wallpapered Wall. 365.75  cm × 914.4  cm (144  in × 360 in). Accessed from http://www.ninakatchadourian.com/chartssystems/ genealogy.php Keifer-Boyd, Karen. 2020a. Viral Imaginations: Draw Chat. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/ wp-content/uploads/2020/10/Viral-Imaginations-Drawchat.pdf ———. 2020b. Visual Analysis of Viral Imaginations: Fears, Needs, Desires, Hopes, Experiences. Viral Imaginations: COVID-19. Accessed from https://live-viral-­ imaginations.pantheonsite.io/wp-content/uploads/2020/10/Viral-­ Imaginations-­Visual-Analysis-1.pdf Kimmons, Royce, Joshua Rosenberg, and Bohdana Allman. 2021. Trends in Educational Technology: What Facebook, Twitter, and Scopus Can Tell Us About Current Research and Practice. TechTrends 65: 125–136. https://doi. org/10.1007/s11528-­021-­00589-­6. Kozinets, Robert, Ulrike Gretzel, and Anja Dinhopl. 2017. Self in Art/Self as Art: Museum Selfies as Identity Work. Frontiers in Psychology 7 (731): 1–12. https://doi.org/10.3389/fpsyg.2017.00731. Lacina, Elaine. 2020. Pandemic Shopping. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-­ submissions/pandemic-shopping/ Lavo, Anne. 2020. 4th of July in the Pandemic. Viral Imaginations: COVID. Accessed from https://live-viral-imaginations.pantheonsite.io/ visual-submissions/4th-of-july-in-the-pandemic/ Li, Qi. 2018. Data Visualization as Creative Art Practice. Visual Communication 17 (3): 299–312. Lin, Maya. 2003. What Is Missing? Accessed from http://whatismissing.net/ Lin, Yu Shiou, Peter Hartwich, Annemarie Wolff, Mehrshad Golesorkhi, and Georg Northoff. 2020. The Self in Art Therapy – Brain-Based Assessment of the Drawing Process. Medical Hypotheses 138: 109596. https://doi. org/10.1016/j.mehy.2020.109596. Maurer, Jay. 2021. Spontaneous Combustion. Viral Imaginations: COVID: 19. Accessed from https://live-viralimaginations.pantheonsite.io/ visual-submissions/spontaneous-combustion/

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McClurg, Lesley. 2020. Pandemic Takes Toll on Children’s Mental Health. NPR. Accessed November 28, 2020, from https://www.npr. org/2020/11/28/938460892/pandemic-­t akes-­t oll-­o n-­c hildrens-­ mental-health McGill, Claudia. 2020. I Hope. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/i-hope/ Mekel, Michele. 2020a. Pandemic Poetry and Pandemic Poetry Slam Assignment. (on file with author). ———. 2020b. Poetry in a Time of Pandemic. Instructional Syllabus. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/wp-content/uploads/2020/10/Poetr y-in-the-Time-of-­­ Pandemic-Poetry-Assignment.pdf Middleton, Kyndra V. 2020. The Longer-Term Impact of COVID-19 on K–12 Student Learning and Assessment. Educational Measurement, Issues and Practice 39 (3): 41–44. https://doi.org/10.1111/emip.12368. Morris, Rebecca. 2020. Cherry Delight. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/ cherry-delight/ Munch, Evard. 1919. Self-Portrait with the Spanish Flu. Oil on Canvas. 150 cm × 131 cm (59 1/16 in × 51 9/16 in). The Metropolitan Museum, of Art, New York, NY.  Accessed from https://www.metmuseum.org/art/collection/ search/668328 Patricia. 2020. How We Coped. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/1559/ Pattison, Krista L., Alicia M.  Hoke, Eric W.  Schaefer, Jeanie Alter, and Deepa L.  Sekhar. 2021. National Survey of School Employees: COVID-19, School Reopening, and Student Wellness. The Journal of School Health 91 (5): 376–383. https://doi.org/10.1111/josh.13010. Pelley, Virginia. 2021. ‘Tell Your Story’: The Power of Poetry to Help Kids Cope. National Geographic. Accessed February 24, 2021, from https:// www.nationalgeographic.com/family/article/tell-­your-­story-­the-­power-­of­poetry-­to-­help-­kids-­cope-­coronavirus PBS News Hour. (2020, June 26). Why Poems Can be Safe Spaces During the Pandemic. https://www.pbs.org/newshour/arts/why-poems-can-be-safespaces-during-the-pandemic Seurat, Georges. 1884. A Sunday on La Grande Jatte. Oil on Canvas. 207.6 cm × 308 cm (81.7 in × 121.25 in). Helen Birch Bartlett Memorial Collection. Art Institute, Chicago. Shim, Yerin, Andrew T. Jebb, Louis Tay, and James O. Pawleski. 2021. Arts and Humanities Interventions for Flourishing in Healthy Adults: A Mixed Studies Systemic Review. Review of General Psychology 25 (3): 258–282. Accessed from https://journals.sagepub.com/doi/pdf/10.1177/10892680211021350.

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Slocum, Terry, Robert McMaster, Fritz Kessler, and Hugh Howard. 2005. Thematic Cartography and Geographic Visualization. 2nd ed. New  York: Pearson Education. Srinivasan, Shreya. 2020. Dressed for Zoom Meeting. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/ visual-submissions/a-girl-with-braids/ Stetz, Lauren. 2020a. Viral Imaginations: COVID-19 Cartography. Lesson Plan. Viral Imaginations: COVID-19. Accessed from https://live-viral-­imaginations. pantheonsite.io/wp-content/uploads/2020/10/Viral-Imaginations-­ COVID-19-Cartography.pdf ———. 2020b. Viral Imaginations: Engaging with Art History. Lesson Plan. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/wp-content/uploads/2020/10/Viral-Imaginations-Engaging-­ with-Art-History.pdf Stuckey, Heather L., and Jeremy Nobel. 2010. The Connection Between Art, Healing, and Public Health: A Review of Current Literature. American Journal of Public Health 100 (2): 254–263. Talamo, Stella. 2020. Not All Heroes Wear Capes. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-­ submissions/not-all-heroes-wear-capes/ Tredinnick-Kirby, Zena. 2020. An Emergence Through Earth’s Protection. Viral Imaginations: COVID-19. Accessed from https://live-viral-imaginations.pantheonsite.io/visual-submissions/an-emergence-through-earths-protection/ UNICEF. 2021. COVID-19 and School Closures: One Year of School Disruption. Accessed March 2021, from https://data.unicef.org/resources/ one-­year-­of-­covid-­19-­and-­school-­closures/ United Nations. n.d.. United Nations Sustainability Goals. Accessed January 28, 2022, from https://www.un.org/sustainabledevelopment/ sustainable-­development-­goals/ Van Gogh, Vincent. 1885–1886. Skull of a Skeleton with Burning Cigarette. Oil painting. 32 cm × 24.5 cm (13 in × 9.6 in). Van Gogh Museum, Amsterdam. Walsh, Colleen. 2021. Young Adults Hardest Hit by Loneliness During Pandemic. The Harvard Gazette Online. Accessed February 17, 2021, from https:// news.harvard.edu/gazette/story/2021/02/young-­adults-­teens-­loneliness-­ mental-­health-­coronavirus-­covid-­pandemic/ Whitney, Shiloh. 2018. Byproductive Labor: A Feminist Theory of Affective Labor Beyond the Productive–Reproductive Distinction. Philosophy and Social Criticism 44 (6): 637–660. https://doi.org/10.1177/0191453717741934. Wojnarowicz, David. 1988–1989. Untitled (Falling Buffalos). Gelatin Silver Print. 35.5 cm × 45.9 cm (14 in × 18 1/16 in). The National Gallery of Art, Washington, DC. Accessed from https://www.nga.gov/collection/art-­object-­ page.139455.html

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Zeman, Adam, Fraser Milton, Alicia Smith, and Rick Rylance. 2013. By Heart: An fMRI Study of Brain Activation by Poetry and Prose. Journal of Consciousness Studies 20 (9–10): 132–158. Karen Keifer-Boyd  PhD, is Professor of Art Education and Women’s, Gender, and Sexuality Studies at The Pennsylvania State University, and has co-authored several books—Teaching and Assessing Social Justice Art Education: Power, Politics, Possibilities  (Routledge, 2022);  Lobby Activism: Feminism(s)+Art Education (2021); Including Difference (2013); InCITE, InSIGHT, InSITE (2008); Engaging Visual Culture (2007), and co-edited Real-­World Readings in Art Education: Things Your Professors Never Told You (2000). Her research focuses on transdisciplinary creativity, inclusion, feminist art pedagogy, activism, transcultural dialogue, action research, and eco-social justice art. Michele Mekel  sholds a JD, MHA, and MBA, and is the Associate Director of The Pennsylvania State University Bioethics Programme, as well as Assistant Professor of Bioethics (JD, MHA, MBA). She is also the co-principal investigator (PI) of the Viral Imaginations: COVID-­19 project. As an avocation, she is a poet whose work has appeared in various academic and creative publications. Her research occurs at the nexus of bioethics, law, policy, and health humanities. Lauren Stetz  holds a PhD in Art Education with a minor in Women’s, Gender, & Sexuality Studies from The Pennsylvania State University and a Master’s in Art History from George Mason University. An experienced art educator, Stetz has taught in public and private schools and colleges throughout Pennsylvania, Virginia, and Washington, DC, for over a decade. Her research explores data visualization, transnational feminist activism, and empowerment through the arts.

CHAPTER 5

Narratives of Repair and the Re-articulation of the Pained Self: A Study in Painscapes Tea Gerbeza

Introduction As a disabled multimedia artist—who works primarily with paper and a scanner—chronic pain is something I live with daily, which makes disability and pain inherent to my practice as an artist and inseparable from my work. Painscapes,1 a series currently comprised of nine pieces, is a virtual exhibition accessible to all on my website.1 I recommend those reading this chapter to have my website open to look at the images as you read. The work is composed of paper-quilled designs made on the bed of a scanner that imagines what my pain would look like if pain could be x-rayed. Paper quilling is the art of rolling paper strips and pinching them into shapes. The designs are made from individual paper-quilled shapes (see Fig. 5.1). The idea for this project came from reflections I’ve done about the ableism I’ve experienced, particularly when my pain was involved. Ableism is “[t]he system of discriminatory practices and beliefs that maintain and perpetuate disability oppression” (Sins Invalid 2019, 142). For instance,

T. Gerbeza (*) Regina, SK, Canada © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_5

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Fig. 5.1  Samples of paper quilling shapes. Photograph taken by the author for the purposes of this chapter

in my high school gym class, there would often be whispers about whether or not I was faking the pain I felt to get out of the activity we were doing that day. I also reflected on my own feelings towards my pain and how much resentment I’d feel towards my body for its pain. Thinking about this complicated relationship I had with my body and pain, I wanted to try to recontextualize pain for myself, and create a new imagining about how pain lived in my body. My work provokes reflection about how pain, and its different modes, interacts with the body, and how pain echoes and affects daily life. Painscapes centres my experiential knowledge of pain rather than imposing a traditional medical lens of pain, therefore transforming my knowledge of pain and connecting it to the self, others, and my community. Papermaking, Drew Luan Matott and Gretchen M.  Miller (2020) note, “can be applied as means for transformation, reclamation, and restoration related to communicating experiences and emotions, especially as

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these involve encounters with mental wellness, trauma, and loss” (311). While Painscapes is not a process of literally creating paper, the series connects to this idea of transformation, reclamation, and restoration that comes from working with paper because the paper strips and the act of cutting, rolling, pinching, and assembling the strips into designs helps me defamiliarize pain and re-imagine pain’s future away from ableist notions of people in pain. In “The Role of the Imagination in the Practices of the Health Humanities,” Marina Tsaplina and Raymond Barfield (2020) note that “details of a patient’s world are revealed through the stories they tell through multiple material languages” (112). My work explores the nuances in health humanities of lived experience as essential knowledge for medical practitioners to use when engaging with patients. And if imagination is a tool to reveal details of a patient’s lived experience and reclaim that lived reality, then Painscapes relates to this practice through my imaginings of pain’s lived reality and perception. Pain as lived reality is an essential aspect to Painscapes. Hillary Gravendyk (2014) asserts, “[t]he defining feature of perception for those who live with chronic illness or pain isn’t necessarily simply the repression of that pain or illness, or the ability to ‘resist its affective call,’ instead it may be the ability to perceive with that pain, experience, illness, or particularity as part of the body’s capacity for perception and for action” (11; emphasis original). Part of my goal with Painscapes is to perceive with pain, to see its connection to my body’s “capacity for perception” (11). During the process of scanning the images, I laid the shapes on the glass platen (the scanner bed) in the dark, sometimes with my eyes closed. I did this because I wanted my body to be free in the way it wanted to spread the shapes on the glass. There was an intuitiveness my body had in this process, and I felt like the detachment from sight (something I rely on as a visual artist) gave my body permission to use its particular perception of pain to create. From the process of creating Painscapes, I learned and listened to how my body and pain interact, shape, echo and care for each other. I began to think “pain otherwise” (Patsavas 2014, 216; emphasis original) by recognizing that understanding my pain is an act of resistance. And in this “otherwise,” my work shows health humanities in application through the exploration of my “embodied knowledge” (Hogan 2020, 258). Embodied knowledge is knowledge that stems from and involves the physical body in its engagement with art. Language is inadequate to express pain, so language doesn’t know what to call these painscapes. In 2011, I had spinal-­fusion surgery for my severe scoliosis. I have a hazy memory from my time in the hospital

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recovering where I tell my mother to “check the x-ray” for how much pain I felt. I don’t know if I really said to my mother to “check the x-ray” for my pain, but the utterance feels true. I wanted to be able to show her what was inside, rattling. To give her a tangible shape to my pain. For the last few years, I have been working with questions of pain in my paper quilling and scanography artwork: How do we configure pain? Talk about it? View it? What is the shape of my pain? Pain is not visible; its intricacies lie invisible within the body. Therefore, pain is met with “curative impulses of biomedicine, which tends to frame pain as a state to be ameliorated or eliminated” (Lau 2020a). Painscapes engages with Alyson Patsavas’ (2014) hope that “cripistemologies materialize in ways that permit us to think pain otherwise, to produce painful new knowledge, but also to construct analyses about pain that are less painful, and less dangerous to those of us in pain, and in doing so, to re-imagine our (shared, pained) futures” (216; emphasis original). Patsavas (2014) defines “cripistemology(ies)” as “a process of knowledge production that situates pain within discursive systems of power and privilege. The structural conditions that underwrite the devaluation of lives with pain (and by extension disabled lives) must be exposed and critiqued” (205). One of the purposes of Painscapes is to reject the biomedical impulse of eliminating pain and instead attends to pain’s complexities. Living with scoliosis and scoliosis-related disabilities means frequent back and hip pain. On particularly bad pain days, all I can manage to do is lay in bed. During one of these days, I wondered how the understanding of pain would change if x-rays showed pain. Would the people in my life finally believe my pain? How does my (the patient’s) control over these medical images illuminate new, embodied knowledge of pain? I imagined my scanner as an x-ray machine with its capacity to capture intensely detailed images of its subject overtop a deep black background. With this imagined x-ray machine, I wondered how my pain might present itself if the scanner’s glass platen was the field of the x-ray. Painscapes is the product of this investigation. After viewing Laura Ferguson’s Visible Skeleton series—drawings of Ferguson’s scoliotic body in various positions—I was moved to search for a method to explore my body similarly. Ferguson writes that this series was an “investigation of [her] own body and its unusual anatomy” (2008b). In “Crouching Figure with Visible Skeleton” (2008a), I finally saw the familiar crouched position my own body made. Ferguson states that “it was powerful and emotional to draw my scar, my deformity—giving myself

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permission to explore territory I had long kept private” (2008b). This power Ferguson discusses was something I wanted to do for myself, too. However, it wasn’t just the sense of powerful emotion that I wanted; I also longed to understand how my pain informed my view of the world and punctuated my every movement, my every decision. Ferguson also notes that she felt that her x-rays “belong[ed] more to the doctors than to [her]” (2008b). For this reason, the scanography also acts as a reclamation of my body from doctors and surgeons. As a poet and multimedia artist, my examination of pain has taken many forms. In my poetry, pain has manifested as white space and as restrictive or invasive grammar but in Painscapes, I wanted to investigate a different modality that my pain presents itself in. While discussing Karen Fiser’s poetics, Christina Scheuer (2011) notes that “for someone with chronic pain, pain has many different modalities and moods, and the relationship between the body and pain is much more complex than the one made available by [overused or fetishized] metaphors” (164). In “Photography,” Susan Hogan (2020) explores the intersections of photography and health humanities and asserts that pictures “can be used to represent and explore the ineffable” (257). Hogan also states that creating an image “can foster the exploration of embodied knowledge” (258). Painscapes examines pain’s ineffability through a new modality that scanography allows—it unlocks new possibilities in understanding and engaging with my pain and its complexities. Working in the consciousness of my body for this study of pain allows me to honour pain as a lived reality. Travis Chi Wing Lau states, “for those of us whose pain lingers, we have an opportunity to expand narratives that we have long attached to pain by writing anew from that intimate space of kinship with pain. We can honour pain as a lived reality for so many of us, while also moving towards a less painful culture of writing and publication that fetishizes only certain forms and representations of pain” (2020b). Through my connection of Painscapes to x-rays, I engage with what Lau outlines here. I expand my knowledge of pain by imagining its presence as intricate paper-quilled circles and scrolls. Lau also discusses his own explorations of pain: “In revisiting older work, I noticed such a desire on my part to speak for or over my pain or even to force out something we might call the ‘aesthetic’ that neither respects pain’s complexities nor addresses it on its own terms. Pain’s terms are my terms, after all” (2020b). I’ve had similar experiences with writing about my pain as Lau describes, and recently I’ve wanted to push out of that habit. My goal with Painscapes is

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to address and give space to pain’s complexities—to give pain its own terms. Lau’s declaration that “[p]ain’s terms are my terms” (2020b) struck me and reformed how I approached understanding my pain. The physicality of working with paper strips on a scanner becomes a physical, embodied act of working with pain, not against it. Pain’s reverberations affect my daily life and scanography provided an entrance into pain’s unknowability. Scanography is “the process of capturing images using a flatbed scanner with a CCD (charge-coupled device) array capturing device” (VanDelinder 2012). Items—which are the subject of the photograph—are laid on the glass platen and the image is made from the item (VanDelinder 2012). In its definition, scanography is technical, almost medical, that I felt like I was giving myself an x-ray. The use of technology—in this case the scanner—is a way into the interior of my body that I never had the chance to experience before. As Hogan asserts, That which is hard to put into words, including mood tones and feeling states, can often be expressed eloquently by images. Symbols, analogies, and metaphorsMetaphor can be sophisticated, and metaphorsMetaphor used in conjunction with one another create complex reverberations within a pictorial frame. Feelings that are indefinable can find expression in a moment of ontological revelation in the act of making. The image and process of production is potentially illuminating. (257)

The paper quilling designs that are the images’ subject is a way to physically engage with my imagined body. When creating a paper-quilled design, one gathers the different shapes and assembles them into a larger design. This action of gathering and building, of making, appealed to me for my study of pain because of the gathering nature of pain in my body. Paper quilling is an art form that requires patience and time. Creating the images for Painscapes took a substantial amount of time, which made the experience an intimate one. Cutting the paper strips, crimping them, rolling them into various types of circles, assembling the shapes on the scanner, scanning them and adjusting the contrast of the image on Photoshop takes hours. Because of the nature of scanning, I have to ensure that no bright light interferes during the scan to get the deep black background, so I hold a box to the scanner while it scans the image. There is no way to guarantee that the image I envision in my mind will be the image that comes up on my computer screen. For some of the images, several attempts were made before getting the visual that I intuitively felt

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reflected what I wanted the image to represent. When I initially approached the study, I didn’t know what I wanted the images to capture, so I followed my intuition without too much reflexivity. In doing this, I was trying to see what was there rather than what I thought I should be looking for. Not knowing how the image would turn out helped me discover how my imagining of pain presented itself naturally. The process of creation was an intimate one and felt like I was relearning my body, an act of reknowing from pain’s consciousness and perspective. The strips were cut, rolled, and shaped by my hands, and if these strips represented my body, then I was shaping myself as well. Relearning a body I had only known through an ableist lens takes time, unlearning, and healing. In my youth, my internalized ableism made me do and say horrific things to my body. Before my spinal fusion, I used to spend much of my time in front of my mirror obsessing over the places my body was different from those of my able-bodied friends. There is a part of my back that curves inward so severely that it leaves a divot, harsh like the edges that form a point in a greater than symbol. Over top of this “crease” is an overlap of skin. I nicknamed this overlap “The Flap” and would often visualize slicing off the excess skin. Scissors in hand, I’d grab the chunk of skin and stare in the mirror. I remember a hard pain formed at my fingertips. I let go of my skin and paid attention to the sensation that flowed from the spot my fingers pinched. Those echoes of pain travelled to each body part. In “The Visible Skeleton Series: The Art of Laura Ferguson,” Alice Domurat Dreger (2004) describes how Laura Ferguson’s “Crouching Figure with Visible Skeleton” externalizes her curved spine, stating, “[Ferguson] literally bring[s] to the surface of her body that which is necessarily prominent in her being—but that which is normally invisible and therefore, at some level, unspeakable” (161). Domurat Dreger highlights the problem of having an “invisible” condition: the condition is often left out of the conversation. This erasure from culture—from books, television, media—is lonely. Throughout my childhood, the loneliness made it hard for me to feel that my experience mattered or was important. I was taught early how to present as able-bodied, while my condition and my pain were left unspoken. It has taken me a long time to unlearn my ableist behaviours, but that internalized ableism I grappled with has stayed with me. Painscapes is a part of my long journey of unlearning. Being in pain is exhausting and, well, painful, but with this pain study I am trying to understand my pain as meaningful. In “Pain, My Kin” Lau (2020b) writes about his relationship with pain: “I felt accompanied by

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my pain. So often, I hear of pain described in terms of alienation or loneliness—that which someone deals with silently in isolation—but I have since felt a developing kinship with my pain. My pain who has remained a witness to every event in my life, who has provided the terms by which I understand them as meaningful events” (Lau 2020b). Lau’s developing kinship with his pain inspired me to do the same with my own. At first, I couldn’t figure out how I might begin to do that or what a kinship might involve. But then I read this in Lau’s “Pain, My Kin”: Rather than trying to circumscribe my intimacies with pain within the act of writing or using writing to mediate my relationship with pain (which inevitably gives way to a futile, paranoid control over it), I have tried to crip my writing process toward a more compassionate invitation of pain into the precarious act of communicating ideas and experiences. A process that does not shy away from pain’s presence but is in fact constituted by pain and its vagaries. (Lau 2020b)

Lau’s essay was transformative for me as it taught me new possibilities for how I could interact with my pain and how I can crip my own creative processes. To “crip” is “to embrace the ways that disability can disrupt the status quo and can lead with difference” (Myers 2019, n.p.). At times throughout this chapter, I will use “crip” as a verb, and this is meant to invoke this act of disrupting normative societal practices that are ableist. Lau’s invitation to give pain an active role in shaping ideas provided me the groundwork for my approach to the series Painscapes. The first image “Scar”2 (see Fig.  5.2) was one I did months before the rest. “Scar” (Gerbeza 2021g) started the series and opened my imagination of what the scanner could unlock. “Scar” (2021g)  envisions my acute back pain as this quilled circle: wound tightly and rippling. The positioning of the large paper-quilled circle at the top makes it appear that the circle is sending vibrations down the body of the scanograph. The movement is stilted; one line (or strip) is longer then shorter then longer, but continuous. During the first-year post-spinal fusion, my mother and I would have to travel two-and-a-half hours to Saskatoon from Regina (in Saskatchewan, Canada) for follow-up appointments. A few weeks post-op, my scar still needed to be dressed with a bandage, and during one of my appointments, the surgeon’s intern changed my dressing. The pain that vibrated from each pull of the dressing tape from the edges of my scar is a pain I’ll never forget. Each pull felt like my flesh was being torn from my body. Once my dressing was changed,

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Fig. 5.2  “Scar” Painscapes. Scanner photograph. https:// teagerbeza.com/ projects/painscapes

the searing vibrations stayed for the day. Those echoes are still present, and “Scar” (2021g) is a visual representation of pain’s consciousness and presence in my scar. Patsavas (2014) points out: Biomedicine, invested in broader notions of curing disability and healing suffering, solidifies a notion of pain as something individual, increasingly knowable (with advanced technology), and to be avoided at all costs. … This singular understanding of pain constructs other valuations of pain— pleasurable, enlightening, or even simply non-life shattering—as perverse while simultaneously overvaluing the promise of a cure for pain. … [T]he uncomplicated quest for a medical cure makes curing pain not only desirable but also compulsory (208).

The black background of “Scar” and the rest of the scanographs has a liquid quality that suggests a few motifs: a pain current, an x-ray, a depth of unknowability, and knowledge only pain knows. “Scar” (2021g) and its motifs are a direct contrast to the medical (and cultural) perception of

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chronic pain as “a devastating tragedy” (Patsavas 2014, 203), one that needs to be cured. The depths of pain’s knowledge—represented by the black background—instead suggest a need for exploration and discovery, a reacquaintance with pain and its teachings. Painscapes is my attempt to be reacquainted with pain. Lau states that “the gift of new kinship forged not from a remaking but a reacquaintance. Not merely resignation but redefining a sustainable relationship with pain” (2020b; emphasis original). “Scar” began this journey of reacquaintance and redefining my relationship with pain. The next scanograph in the series is titled “Migraine”(2021e). “Migraine” (2021e) is composed of paper-quilled “s” and “c” scrolls over a black background. The “s” and “c” scrolls are in a circular pattern, resembling a cloud or brain shape. Inside this curving circle are clusters of the scroll shapes. Some clusters have several scrolls, while others have two. Other scrolls are on their sides, not displaying their scroll coils. To make these shapes, half of the paper strip is rolled from the outer edge to the centre, so for a “c” scroll, the two outer edges are rolled to the centre in the same direction to make a “c” shape. For an “s” scroll, the strip is rolled from edge to centre, but after the first scroll is rolled, the paper strip is flipped and the strip is then rolled to the centre, making an “s” shape. The decision to use “s” and “c” scrolls for some of the scanographs instead of prominent circles is because scoliosis curvatures are commonly known through their letter shapes: “s-shaped curve” when there is a double curvature in the spine, or “c-shaped” when the curve is only on one side of the spine (usually to the right). Here, I directly connect my scoliosis and scoliosis-related disability to the paper quilling and therefore to pain. Some of my migraines are related to the pain and tension in my back, so this scanograph captures what I imagine pain during a migraine looks like. The depth of the black background embodies a pulse—the middle scrolls’ position suggests that the grouping was once crowded in the middle but some force spread it out. The motion of the scrolls directed to the right edge of the image causes the viewer to move right to the next scanograph, “Sitting” (2021h). “Sitting” (2021h) is composed of a large paper-quilled circle in the middle. Surrounding the large circle are small circles with varying degrees of open centres. Some of the circles are on their side as they all curve around the larger circle’s edge. One small circle is floating above the rest. I used circle shapes in Painscapes because to me circles represented my conceptualization of pain. Circles are continuous, cyclical, and sometimes

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the basis of shape (as they are in paper quilling). Circles also represent punctures, pressure points, or wounds. These are all qualities I wanted to evoke in Painscapes. “Sitting” (2021h) is the first scanograph that engages with various sizes of circles. The tight, large paper-quilled circle signals a greater pain, while the other surrounding circles in their curve resemble a limp, exhausted body. Another reading of this image is that the circles in their varying degrees of open centres are opened or opening wounds, or mouths speaking—pain sharing its knowledge with me. This knowledge might be that sitting is when both of us have a moment to communicate our needs to one another. Again, the conception of pain resists against biomedicine’s desire for cure and instead highlights how pain has taught me to listen more intently to my body and its needs. I often have to sit to alleviate pain, while other times sitting becomes uncomfortable. But it is pain that notifies me of any discomfort, prompts me to change positions. The placement of this scanograph before “Lung Trouble” (2021d) also suggests that sitting allows me to breathe more freely. Like “Migraine,” (2021e) “Lung Trouble” (2021d) uses “s” and “c” scrolls. The image has a cluster of the scrolls centred at the bottom of the image with a few scrolls travelling upwards from the cluster, while others are on their sides. When my surgeon told me that I would need a spinal fusion, she said it was because my spine’s curvature was so severe that it was reshaping my ribcage, and in this new shape, my ribcage was beginning to crush my heart and lungs. Surgery was necessary for survival. “Lung Trouble” (2021d) was created with the reshaping of my lungs and the space that housed them in mind. In her essay “Scoliosis, Spinal Fusion and Stomach Punches,” Rachael Lippincott explains that “[l]ung function is one of a few things to test after spinal-fusion surgery. The shift in the spine is so dramatic that it can affect the lungs” (Lippincott 2020, 12). “Lung Trouble” (Gerbeza 2021d) envisions what it was like for my lungs when my spine and ribcage were shaping and reshaping them. The clustered scrolls are constricted together, mirroring what breathing was like under the duress my eighty-degree curvature created. However, the scrolls that travel upwards also suggest a movement to familiarity, of getting used to the new space they can occupy. Breathing is a complicated action for me. After my surgery, I still had troubles breathing because of anxiety and I wanted to communicate that, too, in the way some of the paper-quilled scrolls are on their sides and on top of others, barely visible but still present. There is a layering of pain and memory as I processed what my body went through during the time pre- and post-surgery. Creating this

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Fig. 5.3  “Bending Over.” Painscapes. Scanner photograph. https://teagerbeza. com/projects/ painscapes

scanograph helped me process some of the trauma my body houses. As Matott and Miller (2020) suggest, creating with paper “invites the maker into a safe environment to explore experiences, emotions, and sense of self through the process [of creation]” (312). Pain here has given me new knowledge of what still lives in my body. While some of the scanographs focus on anatomy like the lungs or marks on the body like “Scar,” others like “Bending Over”3 (see Fig. 5.3) are titled for their action. I added in the action titles because they represent movement I do with my body daily while other focuses, like “Scar” (Gerbeza  2021g) or “Lung Trouble” (2021d), are directly tied to my surgery. My spinal fusion was a tremendous pain event in my life that changed the entire composition of my body and is therefore a significant focus in much of my work. After surgery, I couldn’t bend over for months. I still have troubles with flexibility, and use bending over as either a stretch for relief or as a small pain event in my day. The coils in this scanograph are of varying sizes and openings to embody the unpredictability of pain

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and its degrees. In the bend, there is an inconsistency of how powerful the pain feels, where pain “hits” the hardest or is the most intense. “Bending Over” (2021a) is also reminiscent of the action I would have to do in the early appointments for my scoliosis. Using a Scoliometer, a device doctors use to measure the degree of curvature for scoliosis, my doctor would tell me to bend over and touch my toes. Then, the Scoliometer was placed on the apex of my spine. When I bend over, the curvature is at its most visible—my hunchback the most prominent. This scanograph embodies these physicalities while also representing pain’s articulation, a spreading throughout my body. Another side effect of my scoliosis is an unsteady and “abnormal” gait. Coupled with a myriad of surgeries from an accident when I was five years old and my natural unusual gait, my right foot is, as much of my health records state, “deformed.” I had to get plastic surgery on my big toe and this reconstruction changed the shape of the rest of my toes on that foot. So much of my body has been reshaped, and the memories my body holds continue to resurface. “Foot Swelling” (2021b) suggests both a “swelling” of knowledge that pain has of what happened to my foot and its trauma, but also how pain manifests in the foot. There is a central pain that expands and moves into the earth with each step. “Foot Swelling”  (2021b) is composed of the gigantic tightly wound paper-­ quilled circle, with a few “s” and “c” scrolls and smaller circles of varying widths and opened centres surrounding the focal circle. The design of the circles resembles, abstractly, a foot being held up off the ground. The movement of circles descending in the scanograph suggests an arching of the foot. Pain, then, controls my movement, how I move, and controls the disentangling of my foot’s history, all while communicating to me that I either need to rest my foot or have it looked at again. In the next scanograph, “Laying Down” (2021c),  rest becomes the focus. “Laying Down” (2021c) brings the large, coiled circle down to the bottom right corner while the rest of the smaller circles ascend from the large one. The large, quilled circle resembles a head and the small circles a body. The black background makes this “x-ray” show the viewer a body falling. In “Laying Down” (2021c), I envision pain’s body mirroring my own. The cluster of circles is not as swollen as in the previous scanographs, indicating a reprieve. The focus of “Laying Down” (2021c)  is care. Paper quilling is an art form that requires care. Paper, while forgiving, is delicate and can rip easily. The paper quiller’s tension in rolling and pinching must be exact or tears can happen. While I quilled, I thought about the parallels

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between my body and paper and how these small acts of care—making sure the tension is right, not holding the strip too tightly when guiding it through the slotted tool or when gluing—were similar to the teachings pain has given me about care: be patient with my body, to write and create within my own rhythms. This wasn’t a quick lesson; I’ve spent much of my life up to this point rejecting this lesson—pushing my body beyond its limits to meet ableist notions of productivity. When I started paper quilling, I learned the lengths patience and care can take me. As I rolled strips, I realized that I needed to give my body this same patience. Pain told me that some days I needed to approach daily tasks like a paper-quilled piece: slow, one shape at a time. This study in my pain taught me about crip time. “Crip time” is writing that takes place in a flexible time frame apart from the normative one (Samuels 2017). Ellen Samuels states that “crip time is broken time. It requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don’t want to, even when we want to keep going, to move ahead” (2017; emphasis original). “Laying Down” (Gerbeza 2021c)  is the scanograph that puts crip time into action in the series through its calm energy, the way one’s eyes must travel slowly up the image to take it in. Frances Cadd (2020), in her article “Life-writing,” notes that life-writing can “facilitate a holistic approach to care as by considering the individual not just as a body that requires treating, but as a human interacting and being influenced by the world around them, awareness can be raised about different social and cultural factors that can impact health and wellbeing” (279). While Painscapes is not directly an act of life-writing in its traditional written sense, it is a kind of life-writing in its embodied experiential knowledge. The pattern of images so far was broad clusters of circles while “Laying Down” (Gerbeza 2021c) embodies a narrow cluster travelling vertically in the field of the scan. Samuels’ point that crip time “forces us to take breaks, even when we don’t want to” (2017) is an essential lesson pain has given me. Samuels also notes that “[c]rip time means listening to the broken language of our bodies, translating them, honouring their words” (2017). Crip time and pain are entangled, and Painscapes is an embodiment, a translating, an honouring of pain’s words. This entanglement between pain and Crip time is another example of an embodied knowledge because my hands shaped and created the scanned paper-quilled images, therefore, directly connecting the physical body to the artwork. My hope is that Painscapes raises awareness to how our culture views pain and disability through my

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personal experience and investigation of my embodied knowledge, and as a community, we can begin to dismantle the harmful, ableist views that permeate our social systems. Muscle strains and spasms are injuries that happen to me frequently and can last hours. “Standing Up After a Long Day” (Gerbeza 2021i)  is a scanograph in response to the pain that happens when I throw out my back. The image is similar to “Migraine” (2021e) in its use of “s” and “c” scrolls; however, “Standing Up After a Long Day”  (2021i) groups the scrolls to the far left, and on the far right the scrolls are scattered. I made this image from the “s” and “c” scrolls because this acute back pain is directly related to my scoliosis-related disability. As Merri Lisa Johnson states of her own scoliosis-related disability, “scoliosis-related disability is episodic, not linear, a matter of intensities, sensations, and situations, not illness and cure” (Johnson and McRuer 2014, 135). Reading Johnson’s explanation of scoliosis-related disability revealed a new perspective and understanding of what I’ve experienced and have since adopted this term. “Standing Up After a Long Day” (Gerbeza 2021i) displays what Johnson talks about: the grouped scrolls at one end of the scanograph that then burst across the page. The expansion across the field of the image indicates an intense, consuming pain. Johnson’s (2014) emphasis on scoliosisrelated disability as “episodic” is something Painscapes as a series explores— all of these scanographs are “x-rays” of episodes of pain. The calmest episode is in the morning after I wake (Johnson and McRuer 2014). The last scanograph in the series, “Pain in the Morning”  (Gerbeza 2021f) displays the time of day where my pain is quiet. The image includes small, varied iterations of circles scattered across the field of the image. This scattering of paper-quilled shapes is less violent than “Standing Up After a Long Day”  (2021i). Instead, the spread of shape feels serene, a gentle communication between pain and my body like a tender ripple of water in a pond. The circles in this scanograph include many that have wide open centres, which suggests an open conversation between pain and the body, perhaps a greeting. Like cells, the circles work together for a persistence of pain. In their paper-quilled intricacy, the scanographs as a series reveal the complexities of pain: being in pain is uncomfortable and not a state I want to be in, but it is also important to me to stop resenting pain and my body in pain. Pain is, Lau states, “[a]ction, reaction’ pained, painful. No singular origin or conclusion, but a living spectrum beautiful in its fullness, in its shifting forms and intensities” (2020b). The title Painscapes came from a desire to view pain’s spectrums, intensities and

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forms as landscapes, places where there is growth and knowledge. As a scape, Painscapes also envisions the body as a place that needs nurturing and care, as the environment needs the same care to grow and stay alive. Finally, between these separate painscapes, there is still a connection as a landscape can stretch to any length. As mentioned earlier, understanding my pain is an act of resistance. I used to work at a bakery for several years. That job was physically demanding: on my feet for eight hours a day, moving constantly, and, among other tasks, having an expectation to be able to lift a fifty-pound bag of flour. During my first year, whenever flour bins needed to be filled, I had to ask a coworker to help. Each time I requested help, I was asked when I would finally be able to lift the bag on my own. When I said I would never be able to lift the fifty-pound bag on my own, I was met with disdain. During a different shift a few years later, my back was searing in pain from the constant motion of a customer rush. I had pulled up a stool to sit on as I worked on folding take-out boxes, but my coworker saw this and told me I worked slower sitting down and that I needed to stand up please. I stood. When I got home, I didn’t get out of bed until the next day. For Johnson, resistance against compulsory able-bodiedness is “crip willfulness” (Johnson and McRuer 2014, 136). She writes that limiting her travel (which causes her varying kinds of pain and debility) came from a change in perception of personal responsibility in engagement (135–6). It was not, Johnson states, that she was “unable to travel; [she is] frequently unwilling” (136; emphasis original). “The decision to be capable,” Johnson writes, “is a winding road of self-deprivation presented as a cultural good. The decision to be unstable, incapable, unwilling, disabled (the sharpness of this ‘cannot’) opens up a world of possibility” (137; emphasis original). I have recently incorporated this “crip willfulness” into my life. I am better at assessing what my bodymind can and can’t handle and what I’m willing to do, though I still have much to learn. “Bodymind” is defined as “the relationship between the human body and mind as a single integrated entity. This term is used to affirm the reality that our minds and bodies cannot be separated” (Sins Invalid 2019, 146). But a part of my crip wilfulness was creating Painscapes to communicate my willingness to acknowledge the importance of my pain. There are, as Patsavas (2014) asserts, “structural conditions that underwrite the devaluation of lives with pain (and by extension disabled lives)” (205). To value my life despite being in pain is to resist.

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My work reframes and re-presents my pain and body. Matott and Miller (2020) posit that “[a]rt production by hand offers a profound personal connection between the process and the maker, and fosters important opportunities for rich expression connected to self, others, and our communities” (311).The process of creating Painscapes was validating in my complicated and complex feelings towards my pain, and it helped with my wellbeing in allowing me a safe space to reclaim my experience of pain from people that didn’t believe my pain or its severity. Tsaplina and Barfield (2020) argue that “[w]ithout curiosity and respect for [patient] stories, medical technology can become an act of assault rather than an act of healing” (112). X-rays were dehumanizing for me in medical spaces as they were often used to override any of my protests against what I was being told. But through reclaiming the x-ray with my imagined scanner x-rays, Painscapes gave me new knowledge about my body’s needs when in pain, and it unlocked poetic and artistic possibilities for me to explore my lived experience. My re-imagined pained future (Patsavas 216) involves defamiliarizing pain as something to be eliminated. Instead, pain, in its delicate paper coils, has beautiful qualities and embodied knowledge to share. Thus, if health humanities, as Paul Crawford (2020) states, is a field that has “challenged the privileging of professional expertise over lived experience” (3), then Painscapes actively contributes to this goal by illustrating how important it is to be unwilling to see my pained experience as less valuable. Health humanities makes it possible for narratives (in my case a visual narrative) of experiential knowledge to become a means of repair of the self by re-presenting and re-articulating the self on its own terms. In sharing this knowledge here, others may find this embodied exercise in self-articulation beneficial to their own healing.

Notes 1. To access Painscapes: https://teagerbeza.com/projects/painscapes. Image descriptions are provided within the chapter with the exception of “Scar” and “Bending Over”—these image descriptions are provided in the end notes. I chose to add these two images as Figures in the chapter because “Scar” begins Painscapes and “Bending Over” uses most, if not all, of the quilled shapes in one image. The rest of the images are viewable on the website. 2. Image ID: “Scar” is a scanograph of a large tightly wound paper-quilled circle centred at the top with only a quarter of the circle showing. Trailing

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behind the circle are parts of a paper strip—some iterations are longer than others. The strip that starts right after the circle is glitched from movement. There are cut-off words on the strips—these words are from old drafts of my poems. The series uses strips cut from old drafts of my current in-progress long poem. All of this is rests overtop a deep black background that is present in all the scanographs. 3. Image ID: The scanograph “Bending Over” is composed of various types of paper-quilled circles: tightly wound small circles, tightly wound medium circles, wide centre circles, closed coil circles, and open coiled circles. The circles are clustered in left middle of the image and are positioned to replicate a “bending.”

References Cadd, Frances. 2020. Life-Writing. In The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian Brown, and Andrea Charise, 276–280. New York: Routledge. https://doi.org/10.4324/9780429469060. Crawford, Paul. 2020. Introduction: Global Health Humanities and the Rise of the Creative Public Health. In The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian Brown, and Andrea Charise, 1–7. New  York: Routledge. https://doi.org/10.4324/9780429469060. Dreger, Alice Domurat. 2004. ‘The Visible Skeleton Series’: The Art of Laura Ferguson. Perspectives in Biology and Medicine 47 (2): 159–175. Ferguson, Laura. 2008a. Crouching Figure with Visible Skeleton. The Consciousness of the Body: Visible Skeleton Series. Accessed from lauraferguson.net ———. 2008b. The Story Behind the Art. The Consciousness of the Body: Visible Skeleton Series. Accessed from lauraferguson.net Gerbeza, Tea. 2021a. Bending Over. Painscapes. Accessed from https://teagerbeza.com/projects/painscapes ———. 2021b. Foot Swelling. Painscapes. Accessed from https://teagerbeza. com/projects/painscapes ———. 2021c. Laying Down. Painscapes. Accessed from https://teagerbeza. com/projects/painscapes. ———. 2021d. Lung Trouble. Painscapes. Accessed from https://teagerbeza. com/projects/painscapes ———. 2021e. Migraine. Painscapes. Accessed from https://teagerbeza.com/ projects/painscapes ———. 2021f. Pain in the Morning. Painscapes. Accessed from https://teagerbeza.com/projects/painscapes ———. 2021g. Scar. Painscapes. Accessed from https://teagerbeza.com/projects/painscapes

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———. 2021h. Sitting. Painscapes. Accessed from https://teagerbeza.com/projects/painscapes ———. 2021i. Standing Up After a Long Day. Painscapes. Accessed from https:// teagerbeza.com/projects/painscapes Gravendyk, Hillary. 2014. Chronic Poetics. Journal of Modern Literature 38 (1): 1–19. Hogan, Susan. 2020. Photography. In The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian Brown, and Andrea Charise, 255–261. New York: Routledge. https://doi.org/10.4324/9780429469060. Invalid, Sins. 2019. Skin, Tooth, and Bone: The Basis of Movement Is Our People. 2nd ed. Self-Published. Johnson, Merri L., and Robert McRuer. 2014. Cripistemologies: Introduction. Journal of Literary & Cultural Disability Studies 8 (2): 127–147. ProQuest. Accessed from http://cyber.usask.ca/login?url=https://www.proquest.com/ scholarly-­journals/cripistemologies-­introduction/docview/1545106235/ se-­2?accountid=14739 Lau, Travis Chi Wing. 2020a. Free and Unfeeling? The Pain Cluster. Post 45: Contemporaries. Accessed from https://post45.org/2020/02/ free-­and-­unfeeling/ ———. 2020b. Pain, My Kin. Brevity’s Nonfiction Blog. Accessed from https:// brevity.wordpress.com/2020/09/21/pain-­my-­kin/ Lippincott, Rachael. 2020. Scoliosis, Spinal Fusion, and Stomach Punches. In Body Talk: 37 Voices Explore Our Radical Anatomy, ed. Kelly Jensen, 4–13. Algonquin Young Readers. Matott, Drew Luan, and Gretchen M.  Miller. 2020. Papermaking. In The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian Brown, and Andrea Charise, 311–316. Routledge. https://doi. org/10.4324/9780429469060. Myers, Christiana. 2019. On the Complexity of Cripping the Arts. CanadianArt. Accessed from https://canadianart.ca/features/on-­the-­complexity-­of-­ cripping-­the-­arts/ Patsavas, Alyson. 2014. Recovering a Cripistemology of Pain: Leaky Bodies, Connective Tissue, and Feeling Discourse. Journal of Literary & Cultural Disability Studies 8 (2): 203–216. Samuels, Ellen. 2017. Six Ways of Looking at Crip Time. Disability Studies Quarterly 37 (3): 2017. Scheuer, Christina. 2011. Bodily Compositions: The Disability Poetics of Karen Fiser and Laurie Clements Lambeth. Journal of Literary & Cultural Disability Studies 5 (2): 155–172. https://doi.org/10.3828/jlcds.2011.13.

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Tsaplina, Marina, and Raymond Barfield. 2020. The Role of the Imagination in the Practices of the Health Humanities. In The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian Brown, and Andrea Charise, 111–119. New York: Routledge. https://doi.org/10.4324/9780429469060. VanDelinder, Debb. 2012. So What Exactly Is Scanography? Debb VanDelinder Visual Artist, Blog. Accessed from http://www.debbvandelinder.com/blog/ so-­what-­exactly-­is-­scanography Tea Gerbeza  (she/her) is a queer disabled and neurodivergent writer, editor, multimedia artist, and occasional scholar. Tea holds an MFA in Writing from the University of Saskatchewan and an MA in English & Creative Writing from the University of Regina in Saskatchewan, Canada. Most recently, her scanograph “My Father Catches Me Confronting Memory” won an Honourable Mention in Room magazine’s 2020 Cover Art Contest, and she was a finalist for Palette Poetry’s 2021 Emerging Poet Prize. Find out more on teagerbeza.com

CHAPTER 6

Exploring Cultural Dance as a Medium for Improving Cross-Cultural Communication in Medicine: The Aseemkala Model Shilpa Darivemula, Moondil Jahan, Lindsay Winters, and Ruta Sachin Uttarkar

Introduction Dance has been a vehicle for cultural communication and socialization for centuries—a medium where action and understanding meet, and cultural rites, such as birth, death, and marriage, are celebrated and passed on generation to generation (Stevenson 2019). The world of biomedicine

S. Darivemula (*) Vienna, VA, USA e-mail: [email protected] M. Jahan Center for Buddhist Studies, Rangjung Yeshe Institute, Kathmandu University, Kathmandu, Nepal e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_6

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and medical humanities has long worked with dance movement therapy— a field developed in the 1940s—to address biopsychosocial integration to address illness clinically, with notable improvement in illness management. This chapter explores the use of dance, specifically traditional dance, to offer a diverse and patient-centred approach to teaching cultural awareness to medical students and physicians-in-training. Applying the traditional dance framework to clinical settings can enhance cross-cultural communication, identify barriers or unexplored areas of healthcare access for cultural minorities in medicine, and improve public health or narrative medicine efforts through this new applied health humanities tool. The framework—the Aseemkala Model—also allows for focused discussions around a clear structure to incorporate a wide variety of cultural and traditional art forms into medical settings. Through traditional dance study and exchange, improved cultural safety and patient-driven cross-cultural communication can be achieved in medical settings. A 2020 systematic review of 15 studies that investigated the effectiveness of dance/movement therapy (DMT) interventions to address mental health found that DMT can have a positive impact on individuals, especially those with mood disorders (Millman et al. 2020, 2–3). Additionally, incorporating DMT as a complementary modality for treating veterans with post-traumatic stress disorder (PTSD) may be a compelling and potentially promising approach to holistic care (Steinberg-Oren et  al. 2016, 48). A 2016 meta-synthesis of nine qualitative studies on the effectiveness of DMT in trauma populations identified that part of the efficacy of DMT may lie in participants naming a movement and identifying it in its relationship to their trauma (Levine and Land 2016, 332). Leveraging the power of movement can initiate an awareness of how the body has stored trauma. With its emphasis on increasing range of movement, DMT may help clients access triggering content they had previously emotionally “locked up” by limiting their physical movement. This taking up of space may suggest increased confidence and comfort (Levine and Land 2016, 338). Additionally, dance may create a sense of individual and community resiliency in dancers by generating a sense of ownership by participating in L. Winters Capistrano Beach, CA, USA R. S. Uttarkar Plano, TX, USA e-mail: [email protected]

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group creative processes and strategizing to solve problems by working together (Buck and Snook 2020, 302). DMT is focused on the therapist-patient dyad (Savidaki et al. 2020). The DMT therapist uses specific tools of movement analysis to observe and interpret the participants’ body language, making conclusions to enhance patient self-awareness and enhance clinical recovery (Savidaki et al. 2020). While DMT is effective and reflects the principles of medical humanities, it contains some limitations. One specific limitation is the lack of cultural and environmental integration into the therapy session. The second is the maintenance of the separation between therapist and patient, which support the power differential in the clinical setting. In today’s ever-evolving world, incorporating diversity in movement and changing the power hierarchy in the world of applied health humanities is essential for ensuring equity in experience and outcomes. Traditional dance offers an integrated biopsychosocial model that incorporates the environment, history, identity, and spirituality in a way the current models of arts-based health, specifically DMT, and cultural competency programming for equity in medical training do not. This chapter introduces a new framework to understand the clinical elements of traditional dance forms as a novel applied health humanities medium and potential adjunct to DMT work. We introduce a new equitable dyad—the community dancer and the provider—through a traditional dance exchange to transmit the art form in a culturally safe manner. Traditional dance exchanges can address the incongruity between medical and patient cultures by allowing for direct interchange of history, experience, and knowledge from diverse people to providers, thus improving patient agency and bridging cultural awareness across cultural and language division. Providers will be trained to understand diverse movement and expression vocabularies beyond the techniques taught by DMT, which is primarily based on Western art forms (Savidaki et al. 2020). The concept of a dance exchange dissolves the divide between the physician and patient by allowing the patient to become a teacher. In a world where the linguistic and cultural power hierarchy rests in the medical system—represented by the provider—the opportunity and choice to pass or not pass on cultural knowledge enhances a sense of innate knowledge, emphasizes patient autonomy in the medical encounter, and dissolves the space in between the provider and patient. Traditional dance is inherently a physical experience, thus embodying the experience of adjustment and adaptation experienced by diverse patients daily for clinicians learning new

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cultural dance movements. Through dance, the nuances of cultural awareness and subtleties of cultural embodiment are noted by providers to improve communication and care for diverse patient populations. We introduce several case studies to demonstrate how two traditional dance forms represent cultural knowledge and inherently contain the elements outlined in the framework. Not only does the framework allow for culturally diverse dance forms to be utilized in clinical settings, but it also serves as a medium for instructing providers on cultural awareness through dance-based exchanges. Understanding how these cultural dance forms holistically integrate concepts from narrative medicine, medical humanities, and public health will serve to enhance cultural transformation, cultural awareness, equity, and diverse patient empowerment in medical institutions.

Defining Cultural Awareness The growth of diverse populations highlights the need for culturally sensitive care to improve healthcare system access, equity, and outcomes (Khanlou et al. 2017). Culturally sensitive care, also described as culturally humble, safe, or competent care, is based on the inclusion of a community’s belief system through understanding its values, language, and communication styles—all factors crucial for eliciting an accurate history, performing an appropriate physical exam, determining the correct diagnosis, and reducing healthcare disparities (Jongen et al. 2018). Teaching cultural awareness in medical education is challenging, starting from accurate and respectful terminology; terms, such as cultural competence, cultural humility, and cultural safety are used as foundations, yet each term is limited. Cultural competence is defined as a “set of congruent behaviours, attitudes, and policies that come together in a system, agency, or among professionals that enable that system, agency, or professions to work effectively in cross cultural situations” (Cross et al. 1989). Yet, on closer examination, these definitions of competence, humility, and safety may simplify the motivations and understanding of the healthcare needs of diverse peoples. Culture is not a discrete unchanging monolith, but a rapidly evolving, intersectional, and complex system (Gregg and Saha 2006). The term “competence” is also outdated yet continues to be used regularly (Gregg and Saha 2006). For the purposes of our discussion in this chapter, the overarching term “cultural awareness” will be utilized to refer to the above variations on the theme of cultural understanding in medicine.

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Training in cultural awareness has remained present, but with limited impact. Since the 1990s, culturally aware interventions have been utilized as key strategies for eliminating bias in medicine and improving cross-­ cultural communication (Jongen et al. 2018). A literature review of cultural competence training programmes in U.S. medical education systems revealed that these programmes most emphasized communication skills, knowledge of cultural beliefs, and being aware of institutional cultural biases (Jernigan et al. 2016). In terms of completing competency requirements outlined in each programme, these attempts at addressing medical student cultural awareness were deemed as successful (Jernigan et  al. 2016). A second systematic review addressing effectiveness of cultural competency education interventions on health professionals and patient outcomes, noted that almost all studies used lecture formats, discussions, and case studies as teaching and learning methods, with most programmes ranging from one hour to three days (Chae et al. 2020). Only one study noted a significant effect on patient satisfaction, with no significant effects on patient clinical outcomes. While health professionals seem to be positively impacted in the short term, evidence on long term outcomes, patient involvement and impact is lacking (Chae et al. 2020). This lack of impact on systems and patient care is evident in the burgeoning evidence of disparity in all fields of medicine, ranging from disparate outcomes in COVID-19 deaths and disease burden, to mental health, to maternal mortality, to access to care and medications and to surgical outcomes. Unfortunately, there seem to be consistently worse outcomes and higher morbidity noted for non-white, minority communities. This emphasizes the lack of effective cultural awareness training in medicine. Culture matters, but it alone does not explain these disparities; culture is a dynamic process that intersects with social and economic barriers to impact health behaviours and outcomes. It is a conversation, not a lecture. To better understand the fluidity and pervasiveness of culture in medicine, a new method of teaching is necessary—one that erases power differentials and introduces culture as a patient-driven complex, ever-changing medium. Thus, we recommend incorporation of traditional and cultural dance—taught and directed as appropriate for cultural safety by the community members themselves—into medical education and training for healthcare professionals. The performing arts, specifically dance, focus on the medium clinicians-in-training are most often observing—the medium of the human body. Therefore, studying and learning cultural dances—the ways in which diverse bodies move, heal, and tell stories—has potential

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long term clinical impact. We therefore recommend traditional dance exchanges between community artists/patients and providers. This new method of instruction can highlight the subtleties of cultural exchange through performance and serve as an adjunct to the work started by DMT to improve clinical outcomes and communication. To explore this concept of traditional dance exchanges to address cultural competence in provider-patient communication, we will first define the elements of traditional dance that highlight clinically relevant cultural values missed in traditional cultural competency teaching to provide a critical framework for discussion. A review of existing literature on traditional dances and the resulting perspective on health and illness will be discussed. To offer a practical approach to utilizing traditional dance in clinical care teaching, we conclude with definitions of traditional dance exchanges and explore a case study on using traditional dance exchanges. Specifically, through learning a traditional dance, physicians can (1) identify verbal and non-verbal customs, histories, politics, values, and cues essential for cultural notions of mutual respect and expression of discomfort or pain; (2) understand diverse and creative expressions of embodiment; and (3) remove artificial barriers of verbal and clinical power differentials to increase cultural awareness.

Elements of Traditional Dance: Building an Equitable Framework for Identifying Cultural Values Literature Review on Dance as a Healthcare Tool Throughout history, dance has been a vehicle for self-expression and a mediator of social forces. In their exploration of the neuroscience and evolutionary import of dance, Dale et al. (2007) argue that dance was a way to physically express identity, both as an individual and as a member of a larger community (Dale et al. 2007, 93). Ritual dances, for example, may draw on a community of dancers to symbolically leverage the power of nature (Dale et al. 2007, 93). Dance’s drawing on metaphysical forces to cure physical ailments has been illustrated throughout history: tarantella of southern Italy, for example, was a frenetic dance tradition where the victim of a spider bite would be cured of the poisonous bite after dancing into a frenzy (Dale et  al. 2007, 93–94). The history of using

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movement to heal can be seen in the current use of dance therapy interventions to address the needs of abuse survivors, and a variety of medical issues including neurodegenerative disorders like Alzheimer’s and Parkinson’s, schizophrenia, mental health issues like anxiety and depression, and certain eating disorders. Like how the tarantella dance “draws” toxins out of the bitten body, some suggestions have been made that individuals with Parkinson’s who may be rendered immobile by their condition, may be drawn into movement by music (Dale et al. 2007, 94–95). A relationship between intentional movement and physical health outcomes is fundamental to understanding dance as both a physical and a metaphysical salve. As a physical activity, dance helps support weight loss (Bruyneel 2019, 5, 7–8) and mental health in populations with various pathologies (Bruyneel 2019, 3–5; 7–8), as well as certain functional health outcomes in older adults (Rodrigues-Krause, Krause, and Reischak-Oliveira 2019, 59) and adults (Yan et al. 2018, 943–944). Clinical studies have considered the beneficial effect of dance in people with non-Parkinson’s neurological disorders and the impact on body functions (Patterson et al. 2018, 3, 18–19) and cerebral palsy (Lopez-Ortiz et  al. 2018, 393–394). In community-­based settings, dance interventions have been used to promote physical activity among various generations in under-served urban neighbourhoods (Schroeder et al. 2017 3, 6–8); dance’s low-cost nature and enjoyability, and its adaptability across generations, make it an ideal intervention in under-resourced communities (Schroeder et al. 2017, 8). Dance draws on group sharing-space practices, creating a space where body, brain, and mind experience connection somatically, cognitively, and emotionally (Levine and Land 2016, 337). In her qualitative study of the effectiveness of a dance intervention for adolescent girls in Sweden, Duberg (2016) found that the programme’s accepting community allowed participants with internalizing problems to enjoy movement, feel empowered by dance, experience positive attitudes in themselves and others and more trust in themselves and their abilities (Duberg et al. 2016, 5, 8–10, 12). Similarly, in a dance programme pilot study for veterans with PTSD, results suggested improvements in participants’ well-being and group connection (Steinberg-Oren et  al. 2016, 48). In a therapeutic setting, dance can at times, replicate the sense of community created by certain group community dances. In these spaces, dance creates a self-contained safe space for group members, encouraging relationships among individuals to forge because of shared purpose. A 2020 systematic review of 28

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qualitative studies found that participating in dance and music practice contributed to social interaction and community-building, as well as well-­ being, specifically quality of life in group-based dance settings, encouraged body positivity and self-acceptance (Sheppard and Broughton 2020, 12–13). As Jamison notes in his exploration of folk dances of Appalachia, communities of dance not only provide temporary physical and relational connection, but can help serve as extended social support for dancers—a system which is becoming increasingly important as styles particular to a specific community approach obsolescence (Jamison 2015, 176). Dance functions as both a physical collective community practice and a representation of it. For example, community dance practices of the African diaspora are deeply intertwined with social and spiritual elements. Both secular and spiritual dances centre the dancing/social body within a metaphysical world. This link is a foundational for diaspora communities which, despite histories of violence and uproot, have been able to transmit embodied cultural movement knowledge (Daniel 2011, 14, 16) creating unique communities of practice as a result. Collaboration between biomedical models and traditional medicine have been advocated by the WHO and others (Kpobi and Swartz 2018, 5), and there continues to be a need to recognize the potential that traditional healers can play in mental health services (Esan et  al. 2019, 395–396). What studies on cultural dance offer is not simply a recognition that dance is a vehicle for cultural expression, but that it can be effective in addressing the unique issues of a specific community. In her work with young and adult Karen refugees from Thailand, Smith (2018) found that traditional dance allowed dancers to connect with and embody their culture and feel a sense of solidarity with Karen around the world, develop new friendships, and build a relationship with their community. She suggests that participating in Karen traditional dance encouraged dancers to develop an inner strength, predicated on their heritage, which allowed them to operate in their environment with more confidence (Smith 2018, 6–7). As Borunda and Murray (2019, 8–9) offer, group cultural dance practices in Indigenous communities that allow dancers to connect to their history, is both a maintenance and an affirmation of culture and existence, a proclamation and reclamation of agency and presence in the face of a violent colonizing history. Simultaneously, dancers benefit from reduced stress response and mental health benefits derived from participating in

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community cultural dances that (re)create feelings of community and human connection (Borunda and Murray 2019, 2–3, 8–9). In Danza, for example, a ceremonial Aztec dance, movement becomes an evocation of memory—when memory is embodied through dance, the dance transforms to meditation (Borunda and Murray 2019, 9). In many Indigenous cultures, there is a complex, interrelated relationship between the corporeal, intellectual, and metaphysical (Borunda and Murray 2019, 7). In cultural dance practice, performers may both imitate and effectively change the natural environment, consequently creating connections both between dancers and larger natural forces. This relationship between dance and community is present in some African traditions as well, where dance may be used to achieve both community and individual health. Traditional African dance practices are informed by concepts about health and sickness that draw on social, physical, metaphysical, and mental spaces are foundational to understanding trauma (Monteiro and Wall 2011, 237–240; Salihu et al. 2021, 2). West African dances strongly believe in the integration of mind and body to heal, and their dances often rely on community performance to heal temporary illnesses, supporting the belief of divine embodiment. Humans, in West African dance traditions, have a spiritual root that causes the imbalances leading to illness, the reharmonization of body, spirit, and mind through empathic community relationships and support helps to bring health (Stevenson 2019). The emphasis on spirituality and community are noted as culturally valued elements through observation of West African dances. The Mapuche people of Chile perform an annual nguillatún, the Mapuche traditional ritual dance, to realign the cosmos clearly; this dance delineates gender roles, community roles, customs for respect through concentric circular movements around sacred plants, emphasizing their collective responsibility to heal WallMapu—the world and land on which they live (Boccara 2002). The Mapuche believe their connection to their land is the source of their medicine; the traditional healer, or the machi, often collects an extensive patient history, plays the sacred drum, and evaluates a patient’s urine sample along with the rest of the physical exam, before diagnosing the illness and prescribing local herbs for recovery— herbs that not only are active agents, but also contain symbolic and religious significance for holistic healing (Torri 2010). Understanding the importance of land is key to understanding the core values of the Mapuche definition of health.

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Unsurprisingly, when communities are deprived of their cultural dances, the relational and metaphysical qualities that stabilize a person and a community begin to deteriorate, which result in more vulnerability to external environmental stressors. African ritualized dance practices, for example, provide a safe space in which to work through distressing feelings by associating it through movement, performing the movement until the stress response becomes manageable. Overcoming these strong emotions leads to a sense of resiliency, and the knowledge that crises can be worked through (Monteiro and Wall 2011, 239).

Traditional Dance Exchanges: A New Applied Health Humanities Teaching Tool Traditional dances, such as the Mapuche nguillatún or the West African dance, represents the elements they consider to be essential to their health, be it societal harmony, community empathy, land ownership and environmental health. These elements are more recently being recognized as impactful to improving individual and public health by the medical complex; however, the methods in which these elements are incorporated into medical education are bereft of any cultural significance. Without cultural roots, incorporation of these elements into clinical encounters and to improve public health remain a neocolonialist pursuit. If invited, participating in such traditional dance rituals through exchanges can offer new avenues for physicians to re-examine and address diverse values in a culturally unique community and compare them to values in medicine to increase empowering utilization of healthcare systems by minority groups in a way they see as best fit for their people. Embodiment is an eco-social theory described by Krieger in her 2004 article (Krieger 2005). Krieger states that humans are simultaneously social, emotional, and biological beings, whose bodies and emotions tell stories inherent to our existence, including stories we may choose not to tell, revealing truths about your physical and emotional states (Krieger 2005). Embodiment is largely cultural as well, and for physicians reading bodies in clinical encounters to diagnose illness and for patients presenting with symptoms to tell their history and physical, understanding this embodiment in physician-patient communication requires cultural awareness. The power of “dancing in another’s shoes” can serve to assist physicians to better understand the roots of certain health behaviours, certain greetings, cultural norms, and cultural knowledge missing in the lecture

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format. Understanding various forms of embodiment can enhance the basic history and physical exams that form the basis for diagnosis and treatment in medicine. This levelling of the power differential between physicians and community patients through the inherent challenges of physically learning dance—one taught by the very people who are patients but also community members—allows for improved cross-cultural communication. Learning a new traditional dance also increases reflection of the physician’s own cultural embodiment in relation to learning and understanding a new dance form. This critical self-reflection is essential for developing cultural understanding, and it is one that is lacking in current curriculums developed and utilized in graduate and undergraduate medical institutions. Traditional dance exchanges can support the development of culturally sustainable problem-solving strategies to help improve clinical communication, health utilization, and trust between healthcare systems and underrepresented communities.

Framework Our model addresses cultural diversity in medicine and teaches medical students cultural awareness in a patient- and culture-centred format. A traditional dance exchange is when a community member or members choose to teach components of their traditional dance to another non-­ related community, with the goal of allowing the student-community to experience body, mind, and spiritual culture through dance. An organization called the Aseemkala Initiative, uses traditional dance exchanges to model the framework below. One workshop created a traditional dance exchange between medical students and refugee women from multiple countries as a pilot study (Darivemula et al. 2021a, b). Per the results of their pilot programme, the traditional dance exchanges between refugee women from multiple countries and medical students created new channels of communication and community-building, beyond the need for a shared language. The women, who often face discrimination and challenges adjusting to American society, particularly around medical care, demonstrated their innate cultural knowledge and expertise. This reinstated a vital sense of control and agency over themselves and their health. While the full health implications of this intervention are yet to be studied, initial conversations post-exchange demonstrated improvement in mood, community connection, and a sense of belonging for the participating women and medical students (Darivemula et al. 2021a, b) (Fig. 6.1).

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Fig. 6.1  Aseemkala traditional dance framework for patient-provider cross-­ cultural understanding

The two case studies that follow explore how the framework exists in two traditional dance forms and how learning these dance forms in short, simple traditional dance exchanges can improve clinical cultural awareness. Case Study: Caryānṛtya (Caryā Dance) of the Kathmandu Valley, Nepal I ntroduction of the Dance Form Caryānṛtya (caryā dance) is a form of South Asian dance, which is accompanied by caryā or cacā songs of the Newar tradition. While the traditional

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practice of this dance by the Newar Vajrācārya priests as a tantric ritual continues, certain aspects have recently become publicly accessible as a performing art, signifying the cultural heritage of Nepal. The caryā or cacā songs are the earliest examples of the Eastern Indo-Aryan languages such as Bengali, Maithili, Oriya, Assamese, and so forth (Kitada 2012, 193). Therefore, the lyrical literature consisting of the caryāgīti (caryā songs) such as the Caryāgītikoṣa is hybrid and enigmatic in nature. In the Newar tradition, the oral tradition of the cacā songs (caryā songs) are performed together with caryānṛtya (caryā dance), during various Newar rituals (Kitada 2012, 195).  istory, Basics, and Performance Rituals H Although previously restricted to being performed as an esoteric tantric practice by the Newar Vajrācārya-s, the caryā dance tradition begun its journey as a performing art with the rise of the Kalāmaṇḍapa movement (“the Arbor of Art”) (Kitada 2012) in the twentieth century, an initiative taken by the luminary figures such as Ratnakāji Vajrācārya, in order to make this dance tradition more inclusive and accessible to the public. As a consequence, since the late twentieth century, in addition to religious concerns, the evolution of caryānṛtya also encompasses social, cultural, and political aspects of the Newar society, such as the element of folklorization and the Janajati movement, thereby invariably impacting cultural rights, national and ethnic politics, along with tourism and creative industries of Nepal (Gellner 2001; Widdess 2004). At the same time, this has also resulted in an emergence of female caryā dancers within this tradition. Moreover, gaining more public appeal in the recent decades, caryānṛtya as a performing art is creating new ways to preserve Newar cultural knowledge and heritage (Kitada 2012, 197). Caryānṛtya can be understood as the embodiment of Himalayan Buddhist understanding of transforming our afflictions into the primordial wisdom, thereby actualizing true happiness and well-being. In fact, the practice of this dance form is based on the fundamental understanding of prajñā or wisdom in the Buddhist Philosophy which entails the complete realization of the abiding mode (how things truly are) and appearing mode (how things appear) of all the phenomena (Mipham 1997, vol. III, para, 18.15, p. 17). This transcendental wisdom (Skt. prajñāpāramitā) is likened as the “king of medicine” since it “cures the disease of the disturbing emotions” (Mipham 1997, vol. III, para, 18.18, p. 18). Absence of such wisdom is ignorance, which is regarded as the root of samsara or our

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cyclic existence, encompassing all our afflictions, disharmony, illness, and suffering (Mipham 1997, vol. I, chap. 4). In particular, caryānṛtya is a form a Himalayan Buddhist Vajrayāna or tantric ritual, which is rooted within the Buddhist tantric understanding that through the transformation of the five kleśa or poisons/afflictions (delusion, hatred, pride, desire, and jealousy) into the five jñāna or wisdom/knowledge (wisdom of dharmadhātu, mirror-like wisdom, wisdom of equality, wisdom of specific knowledge/discernment, and all-accomplishing wisdom), one actualizes the perfect and complete Buddhahood, thereby transcending all kinds of suffering (Buswell and Lopez 2014, 1509). In general, the caryāgīti is about Himalayan and South Asian deities with a distinct Himalayan Buddhist identity associated with specific Newar Buddhist rituals (Kitada 2012, 194). The caryānṛtya accompanying the caryāgīti contains the specific mudrās and postures for the deity and the dance is offered in a specific format. For example, a traditional dance offering for a deity named Mañjuśrī would be performed in the following order: dance offering of Guru Praṇāma (refuge and salutation to the three jewels: Buddha, Dharma, Saṃgha), dance offering of Soḍaṣa Lasya (the 16 goddesses’ offerings), and the main dance offering for Mañjuśrī. Ratnakāji Vajrācārya, a renowned caryānṛtya practitioner and scholar, indicates that caryānṛtya is an aspect of the sādhana (yogic meditation) pertaining to a deity, which ultimately enables the practitioner to realize śūnyatā (Buddhist doctrine of emptiness) by transcending the mundane dualistic nature of our ordinary consciousness (Vajrācārya 1986, 5). When the sādhana is performed through dance, the dancer/practitioner embodies the deity through hand and body postures while maintaining the meditative state in the mind along with mantra recitation and caryā song singing by the priests and musicians—thus incorporating the body, speech, and mind (Skt. kāya-vākya-citta), which is a crucial aspect of the practice (Vajrācārya 1986, 5–6). In fact, the Hevajra Tantra, a Buddhist tantric exegetical corpus related to the caryānṛtya, identifies the importance of this unity in Himalayan Buddhist tantric practices in the following verse: “Song symbolizes mantra, dance symbolizes meditation/ And so singing and dancing the yogin always acts” (Snellgrove 1959, 64). How Caryā Dance Illustrates our Critical Framework To situate caryānṛtya in DMT and narrative medicine, a discussion on caryānṛtya as a transformative dance in the context of Himalayan Buddhist tantric rituals is crucial. Caryānṛtya can be understood as a dance of

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transformation primarily in the context of the Hevajra Tantra (Snellgrove 1959), along with specific notions of kāya sādhana in Buddhist Sahajiyā thought (Dasgupta 1946), and Yantra Yoga/Trul-Khor (Tib. ‘khrul ‘khor) in Dzogchen practices (Baker 2017). In this regard, in addition to personal healing or transformation (such as transforming one’s subtle energy channels), there is also a notion of collective healing or transformation (such as performing the function of blessing, subjugation, protection, “liberation in viewing,” and so forth (Lerner 1983)). Whether personal or communal, this transformation is rooted within the fundamental understanding of healing in Buddhism. The term transformation is preferred over healing in this context, because in the Buddhist Philosophy, once one transforms one’s afflictions, one will no longer experience suffering, whether physically, mentally, or otherwise. The transformation of afflictions entails various training of the body, speech, and mind. The caryānṛtya dance tradition combines these physical, verbal, and mental training into dance movements. The ultimate goal is to become a buddha or to “wake up” (the word buddha comes from a Sanskrit verb root √budh, which means to wake up). This can also be understood as being liberated from the bondage of suffering and disease through attaining a holistic transformation. From an emic perspective, the Himalayan Buddhist tantric ritual dances serve a range of personal and communal functions which can be understood in two aspects. First, these sacred Dharma dances perform specific functions relating to the land and community such as subjugation, protection, purification, and so forth. Second, if performed in a public setting, these function as “liberation by sight” among the audience (Lerner 1983, 52). Treating the body as a vehicle for awakening, Lerner makes a compelling case that these tantric ritual dances perform a dual function for both oneself and others (Lerner 1983, 50–53). Outwardly, these Dharma dances perform the benefit of others (such as consecration and blessing), while inwardly, these perform the benefit of oneself (such as generating the profound non-dual meditative state by the dancers which aid in their own awakening). Khenpo Gyaltsen in his commentary to A Lamp Illuminating the Path to Liberation, shares the same view that while the dancers embody the deities, the audience should watch the dance with pure perception in order to truly receive the benefits (Gyaltsen 2016, 156–61). From a multidisciplinary perspective, now that caryānṛtya is practised as a performing art publicly, this opens up the possibilities of utilizing this dance practice in DMT and narrative medicine. This will help bridge the gap in

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understanding the different cultural approaches to healing and transformation while broadening the current understanding of embodiment in the academia. Since the impact of the Kalāmaṇḍapa movement is still influencing the contemporary Newar society, new avenues of using the performing art of caryānṛtya in DMT and narrative medicine can be formulated as future initiatives. This would require an honest and sincere communication between the traditional caryānṛtya dancers and healthcare practitioners. It is important to keep in mind that when caryānṛtya is conducted as a performing art, certain esoteric tantric elements are excluded and it can be identified as a classical dance of Nepal. As a performing art, caryānṛtya could be utilized in DMT and narrative medicine in a similar way that the Indian classical dances such as Kūchipūḍi and Bharatanāṭyam are incorporated. Interestingly, in terms of the Rasa Theory, Sakya Paṇḍita, a renowned Buddhist master, presents his own theory based on the Nāṭyaśāstra, which is suitable for the Buddhist tradition by categorizing rasa in terms of loka rasa (mundane rasa) and dharmic rasa (supramundane rasa) (Gold 2007, 122–23). This range of rasa-s has sama-rasa as an underlying basis, which is understood as the realization of the non-dual nature of all phenomena (Dasgupta 1946, 33–34). This means that from the meditative state of the realization of the sama-rasa, Buddhist Dharma dancers manifest all other rasa-s, to display the vast array of peaceful and wrathful natures of the deities. Regardless of the aforementioned distinct nature in the philosophies of Indian and Newar Classical dances, the performing art of caryānṛtya as an embodiment of Newar Indigenous wisdom endowed with a sacred transformative power has a tremendous potential in narrative medicine because of their shared basic premise of the unity of body and mind. Perhaps one of the most significant aspects of narrative medicine practices is the treatment of embodiment through the lens of phenomenology in current clinical works (Charon et al. 2017, 7). Since the influence of mind-body duality of Western philosophy in the history of medicine practices has been a major challenge in fostering intersubjective relationships in healthcare practices to mitigate the situation, the narrative medicine training encourages holistic awareness, that is, “awareness of the unities of narrative and identity in which body and self—of both patient and clinician—are one” (Charon et al. 2017, 7). This holistic and embodied approach is carried out through the three movements of narrative medicine, that is, attention, representation, and affiliation (Charon et al. 2017, 3) that can bring about healing. Seen from this perspective, narrative practices are not treated as therapeutic tools, rather these are therapy itself (Charon et al. 2017, 129).

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In a similar manner, caryānṛtya as a traditional dance practice can be seen as being cathartic or therapeutic itself. In this regard, caryānṛtya, being at the nexus of narrative medicine and creative arts therapy, has the potential to contribute in three major aspects. First, as a DMT technique-based narrative practice, caryānṛtya can facilitate in refining awareness and sharpening somatic, cognitive, and emotional experiences. This is because when carried out as an esoteric tantric ritual, caryānṛtya incorporates the techniques of Yantra Yoga/Trul-Khor which focuses on the inner channels, winds, and essences (Skt. nāḍī, prāṇa, bindu) of the subtle body. The aim is to transform and optimize the physical, mental, and emotional processes, thereby triggering liberation (Skt. jīvanmukti) (Baker 2017, 58–60). In fact, this is the core understanding of yoga in Vajrayana Buddhism, which means that one is completely free or liberated to be in “union with the natural [unaltering] state” (parenthesis in original text) (Baker 2017, 59). In other words, one has fully transformed the afflictions related to the body, speech, and mind, thereby attaining perfect and complete liberation. Seen through the lens of DMT and narrative medicine, this can be understood as a state of complete healing. Second, as a Newar Indigenous practice, caryānṛtya serves as a rare and unique cultural heritage by restoring and maintaining connection with the Indigenous wisdom passed down from the elders of this tradition (Kitada 2012, 197–98). Similar to what Borunda and Murray (2019) indicate, caryānṛtya creates a space physically (as a dance circle), mentally (as a meditative state), and metaphysically (as a medium to embody natural forces). Finally, as an integrated biopsychosocial model, the practice of caryānṛtya brings together physical, psychological, spiritual, cultural, social, and environmental aspects to induce personal and communal transformation and healing. Since the Kalāmaṇḍapa movement allowed women (local and beyond) to train in this type of dance form for the very first time in its 1000-year history, there has been a recent emergence of female caryā dancers both locally and internationally (Widdess 2004, 13). This allows for a unique opportunity to utilize caryānṛtya particularly for women’s holistic health. Moreover, since caryānṛtya is gaining a wider acceptance among a diverse range of communities in Nepal and beyond (Kitada 2012, 195–96), this traditional dance practice in the context of narrative medicine can serve a two-fold function, that is, as a voice to the untold stories of healthcare inequity among the marginal groups and as an effective medium to raise awareness about physical, mental, and spiritual well-being in a wider community.

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Case Study: Bharatanāṭyam of India I ntroduction of the Dance Form Bharatanāṭyam, also known as Sadhir Attam, is an Indian classical dance form that originated in the South Indian state of Tamil Nadu (Mills 2015). The dance form is traditionally based on interpreting and communicating spiritual ideas and stories commonly from Hindu texts like the Mahābhārata and Rāmāyaṇa (Williams 2004). Bharatanāṭyam derives its theoretical foundations from the Nāṭyaśāstra, the ancient Sanskrit Hindu text of performing arts, written by Bharata Muni, an ancient scholar, around 500 BCE-200 CE. It is a comprehensive poetic treatise covering subjects like the structure of plays, body movements, dramatic composition, costumes, stage, and musical integration with artistic performances (Khokar 1986, 73–76). The word “Bharata” in Bharatanāṭyam is popularly believed to be a mnemonic (“bha”  – “ra”  – “ta”) (Arunkumar and Arundale 2002). While bha stands for bhāva or feelings and emotions, ra stands for rāga or the melodic framework, and ta stands for tāla or rhythm. The harmonious intersection of these elements during “nāṭyam,” which means dance in Sanskrit, is the ultimate target for every Bharatanāṭyam dancer (Arunkumar and Arundale 2002, xxi–xxii). As underlined by the Rasa theory in the Nāṭyaśāstra, apart from entertaining the audience, the chief goal of the dance performance is to elevate every audience member to a plane of reality where they experience their own consciousness and grow through reflecting on spiritual, moral, and life-related questions (Dace 1963). Some of the earliest references come from Tamil epics like Silappatikāram around 200  CE (Khokar 1986 73–76). Bharatanāṭyam was originally performed solely by female temple dancers or devadāsī-s in Hindu temples in devotion of deities and patron kings (Cutler and Orr 2002). Fighting against the 1910 British colonial ban on temple dancing, artists like Rukmini Devi, Balasaraswati, and Yamini Krishnamurti gradually expanded the art form into the mainstream and revived or organized Bharatanāṭyam into various styles or bāṇī-s like the Kalākṣetra and Thanjāvūr styles of Bharatanāṭyam (Cutler and Orr 2002). The Bharatanāṭyam repertoire is a combination of nṛtta or pure dance, nāṭya, or dramatic storytelling, and nṛtya, an expressive blend of both nṛtta and nāṭya (Jayakrishnan 2011). Typically, the art form has been propagated by guru-s to their śiṣya-s or students. While dance technique varies from guru to guru, the central

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Bharatanāṭyam technique is rooted in combining complex footwork with facial expressions and sign language in the form hand and eye gestures (Khokar 1986, 73–76). The dancer commonly performs while maintaining a half squat (araimanḍi) position (Khokar 1986, 73–76). Post-­ colonially, the practice of Bharatanāṭyam gradually diffused across India and parts of the world populated by the South Asian diaspora (Chakravorty and Gupta 2019, 30). During the performance, the dancer is traditionally accompanied by Indian classical musicians, a singer, and the naṭṭuvanār, who is usually the dancer’s guru yielding cymbals (Sinha 2006). The Bharatanāṭyam repertoire today also gets adapted to large group productions and gets creatively explored with non-religious themes and a focus on pure dance along with the traditional repertoire (Jayakrishnan 2011). How Bharatanāṭyam Illustrates Our Critical Framework Bharatanāṭyam dancers use their bodies as a medium to share stories using the narrative technique of abhinaya. Abhinaya encompasses a codified series of hand gestures or mudrā-s, facial expressions, and bodily attitudes that empower the dancer to embody any character (Bajaj and Vohra 2016). Consequently, Bharatanāṭyam necessitates the dancer to flow across distinct identities, traversing between diverse age, gender, and class identities even within a single performance. Classical Indian dance serves as an example of teaching cultural embodiment. Bharatanāṭyam often includes narratives, depicting epic mythologies through specific footwork, handwork, and dramaturgy based on the ancient text, the Nāṭyaśāstra. In this text, Bharata, the author, describes Rasa Theory, where performed emotions, behaviours, and movements evoke enjoyment and reflection in the audience (Kamath 2016). Kamath describes the existence of a relationship between body and selfhood in South Indian dance performances, which she describes as performative selfhood (Kamath 2016). Kamath describes three parts of the dancer in embodying these stories—the bodied self as the costumed, handwork, rhythmic movement-based experience, the embodied self as the emotional projection through these movements and with expressions, and the reflective self as the self-conscious facility existing beyond the danced story as the regulator of the bodied and embodied performative selves (Kamath 2016). This layered storytelling-dancer and their performative selfhood parallels the description of the physician in the narrative medicine model, where the physician joins their patients through their perception of their illness, moving to respond to their patient’s history empathically,

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emotionally impacted by the narrative, and maintaining a sense of reflective isolation to be able to offer the diagnosis and treatment most suited for this patient (Charon 2001). Rita Charon states, “From the humanities, and especially literary studies, physicians can learn how to perform the narrative aspects of their practice with new effectiveness. By bridging the divides that separate physicians from patients, themselves, colleagues, and society, narrative medicine offers fresh opportunities for respectful, empathic, and nourishing medical care” (Charon 2001). The parallels of embodiment both in Bharatanāṭyam for the acculturated dancer and in narrative medicine for the physician further emphasize the value of cultural arts and dance for enhancement of extant clinical cultural awareness and its interplay with the medical system. By creating traditional dance exchanges in which a cultural artist shares their art form in its entirety with provider and patients alike and the provider/patient community reflects on their own embodiment processes through learning a new dance form. Bharatanāṭyam thus also provides a safe space for the queer community to use abhinaya to safely explore various gender spaces. The Aravani Bharatanāṭyam dancers, who have formed a small predominantly LGBTQ community in Tamil Nadu, India, share that learning, performing, and choreographing Bharatanāṭyam helps them explore and legitimize their gender identity (Azzarelli and Concini 2019). They derive their inspiration from the emphasis of non-duality that is embedded in the philosophy of the Hindu Lord of Dance, Śiva. God Ardhanārīśvara, a pre-Vedic form of Śiva, symbolizes the divine and indissoluble blend between femininity and masculinity (Azzarelli and Concini 2019). Thus, incorporating dance forms like Bharatanāṭyam into DMT will give queer individuals an inclusive and safe agency to flow across gender boundaries. Additionally, including the abhinaya-based story telling techniques of Bharatanāṭyam into medical education will enable physicians to personally experience and empathize with the struggles and perspectives of their LGBTQ patients while diminishing biases that may originate from a third-person perspective. Furthermore, racial and socioeconomic minorities not only have a diverse body language, but also may feel alienated and dehumanized by the usage of unfamiliar clinical jargon (Darivemula et  al. 2021a, b). Bharatanāṭyam’s embodied and narrative approach can help bestow physicians trained in it with a better capacity to grasp their patient’s cultural gestures and body language. Ultimately, incorporating culturally diverse and emotion-rich movement vocabulary into medical education can

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weaken language barriers and healthcare disparities by widening the scope of patient-provider communication (Darivemula et  al. 2021a, b). Additionally, with the endless communicative possibilities of combining its 55 root mudrā-s and numerous feet and body positions (Anjali 2020), Bharatanāṭyam allows the usage of multiple mudrā combination options to convey the same idea. Understanding this multiplicity of movements to communicate the same emotion or idea can help nurture in medical students a culture of understanding and embracing diversity in their patient’s ways of communicating about of their life and illness. As Bharatanāṭyam is a narrative dance form, the dancer is creatively challenged to choreograph a piece that delves deep into the inner conflicts of multiple characters. Consequently, it is a common practice in Bharatanāṭyam presentation styles like padam-s, that are imbued with emotional and spiritual lyrical content, to interpret and present even a single poetic line multiple times through varying points of view and emotional tones (Albright and Gere 2003, 141–147). For example, Dr. Deva Priya Appan, a resident-in-training in psychiatry, shares in her opinion piece her experience using Bharatanāṭyam as a medium to create and perform pieces on mental health issues like Schizophrenia, depression, and psychosis (2018). She elucidates how the creative process of these productions gave her the chance to better listen to her patient’s stories, experience the stigma and ridicule while embodying a Schizophrenic character, and uncover the layers of emotions that her patients experience during psychosis (2018). Likewise, Bharatanāṭyam has the power to push the dancer to develop a quasi-first-person perspective that can foster a deep sense of empathy. Thus, the dialogue and deliberation with the historical context, class hierarchy, cultural values, and the emotional, physical, and spiritual perspectives of the individual and the community while working on a Bharatanāṭyam creation can allow physicians to develop an empathetic curiosity and a detailed patient-oriented and communication-based mindset. Understanding Bharatanāṭyam as a powerful communication medium, Tony Stolberg followed a Bharatanāṭyam company’s attempt at communicating science like photosynthesis and the carbon cycle through dance (2006). His research observed dancers “thinking in movement” and sharing scientific ideas along with their own understanding, transcending from “science retelling” to “science showing” (2006). This capacitates physicians with interactive and entertaining ways to educate the public about illnesses and medical science concepts through dance. It also germinates a

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dance-medicine pedagogy that ensures that the act of abstract scientific communication through movement fosters a deeper application-based processing of health sciences concepts while learning them. For clinicians, the impacts of learning Bharatanāṭyam extend beyond cultural awareness and improved patient outcomes. Dance eye-tracking research reveals that Bharatanāṭyam expertise strongly correlates with a heightened ability to predict movement quickly and having shorter fixation times while viewing choreographies (Ponmanadiyil and Woolhouse 2018). Furthermore, research on event segmentation, or chunking action streams into ordered and meaningful units while learning Bharatanāṭyam, suggests improvement in motor learning and verbal working memory function of words primed by familiar sensorimotor representations (Di Nota et  al. 2020). Bharatanāṭyam is shown to also increase upper and lower limb flexibility and strength (Kotian et al. 2020). Thus, the protective impact of Bharatanāṭyam on attention, learning, and memory renders it both as a DMT adjunct tool for patients with learning disorders and neurodegenerative diseases, and as a tool to improve attention and learning outcomes in medical students. Bharatanāṭyam-based DMT has also shown gains in cardiorespiratory illness, and balance and muscle strength outcomes in children and adolescents with Down syndrome (Parab et  al. 2019). In Bharatanāṭyam, bhāva-s or emotional states are deeply explored and experimented with. For example, sthāyī or the dominant and stable emotional state, vyabhichārī or the transitional emotional state, and anubhava or the observable consequence of the emotional state, along with the eight emotions or rasa-s, are classified in the Nāṭyaśāstra (Pavitra and Shubrata 2014). Such a nuanced and in-depth emotional analysis and expression of every character while simulating the desired rasa or emotions in the audience fosters a profound awareness of emotions, mental health, and cultural psychology in dancers. Thus, learning Bharatanāṭyam could bolster a physician’s emotional vocabulary and sensitivity, and enhance their connect with their patients. As creative engagement with Bharatanāṭyam makes the dancer temporarily abandon their own personality and beliefs and fluidly straddle across characters and cultural viewpoints, it can help medical students develop a patient-first approach. Modern-day innovation with this traditional dance form unravels the challenge of creating an original piece within preset parameters while often collaborating with a group of artists (Banerjee 2005). Such a challenge can nurture the flexibility and creative spirit in

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medical students to innovate and heal within existing clinical and legal parameters and approach ethical dilemmas in a holistic, collaborative, and empathetic manner. As physicians are progressively working in multidisciplinary teams, collaborative teamwork is becoming an indispensable goal competency of medical education. Jones et al.’s qualitative research on creative art and medical student development suggests that students who collaborated in teams on narrative-based creative art projects on common illness themes experienced a sense of community and personal growth and reflected on human dimensions of medical care (2016). Accordingly, infusing a complex narrative-based tool like Bharatanāṭyam into the medical curriculum can facilitate case-based, value-based, and action-oriented collaboration in medical students. Bharatanāṭyam and healing in medicine are intrinsically connected in their audience- or patient-centric attempt to understand and harmonize the relationship between the senses, body, and mind. Melding the narrative approach of Bharatanāṭyam with medical education can empower physicians and medical students to fluidly empathize with patients and peers across cultures, better understand various illness and LGBTQ experiences, enhance their collaborative and listening and observation skills, and develop an arsenal of movement and emotion vocabulary to culturally sensitize their communication with patients.

Conclusion and Future Directions Cultural awareness is a complex process of developing self-awareness, acquiring specific, nuanced cultural knowledge and participating in effective, non-biased communication to improve health outcomes (Tehee et al. 2020). Further studies into more cultural arts and larger artistic programming can be beneficial to achieving this process and enhancing the research being conducted in the field of cultural dance and medical humanities.

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Moondil Jahan  is a Himalayan Buddhist contemplative practitioner focusing on the meditative ritual dances of the Newar and Tibetan traditions of Kathmandu valley in Nepal. She holds a MA degree (summa cum laude) in Buddhist Studies from Kathmandu University, Nepal (2022). In addition to her academic research, she is also training in these ancient and sacred dance traditions. Prior to graduate studies, she did a Watson Fellowship (2016–2017) on indigenous drumming and folk dance traditions primarily in West Africa and South Asia. She went to Berea College (KY, USA) for her undergraduate studies (2016). She served as a research fellow and is a board member of the Aseemkala Initiative.  Lindsay Winters  is a licensed practitioner of the Healing Arts and an associate social worker at the Union of Pan Asian Communities, where she counsels clients with substance use disorders. She holds a Master’s degree in Social Work from San Diego State University and served as a 2020 research fellow at the Aseemkala Initiative.  Ruta Sachin Uttarkar  is an undergraduate student studying Neuroscience and Psychology at the University of Texas at Dallas. She studied Bharatanāṭyam with Guru Medha Dixit in Bengaluru, India, and now studies with Dr. Rathna Kumar. She completed her Arangethram in 2015 and served as an IndianRaga fellow in 2018–2019. She will be starting medical school in 2022, with a focus on medical humanities and global health. She is serving as an Aseemkala research fellow.

CHAPTER 7

Deep Flow: A Tentacular Worlding of Embodied Dance Practice, Knowing, and Healing Jeannette Ginslov

Introduction This chapter examines how embodied dance practice may be conceived to thrive within a health humanities framework as a mode of arts-based knowing and arts-based healing through phenomenological research and arts practice. It reflects a link to the exponential growth and aims of the Creative Public Health Humanities (Crawford 2020) and “a growing international acceptance of the notion that participation in the creative arts can be beneficial for health” (Clift 2014, p. 120). It thereby departs from the health sciences’ instrumental approach to dance and the humanities’ tendency to treat dance as a cultural object and commodity. The chapter presents Deep Flow (Ginslov 2021), a method of embodied dance practice that uses a performative phenomenological approach to entwine and enliven two different sets of practice: phenomenological research and artistic research.

J. Ginslov (*) Media & Communication Studies, Malmö University, Malmö, Sweden © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_7

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Deep Flow uses a phenomenological methodology, “tentacular worlding” (Ginslov 2021), an emergent and performative methodology that is animated by “cat’s cradling” (Haraway 2016) phenomenological and artistic research. Instead of relying on traditional health systems and medicines to improve one’s health, this form of practice has the potential to increase one’s sense of well-being by doing phenomenologies of practice, using one’s own body for creative expression and self-reflexivity. Through this doing, Deep Flow explores lived experience, by looking inwardly (Ginslov 2021) to experience dance as experience (Fraleigh 2018). This may “open up new dimensions of understanding and experience in relation to well-being and self- (and other)-care” (Purser 2019, 2). Looking inwardly challenges ways of looking outwardly, currently experienced by people living in the so-called Attention Economy, where our attention is constantly engaged with and addicted to information, from social media platforms and television, for example, to such an extent that they constantly captivate our attention and influence our behaviour. Moreover, we find ourselves in an increasingly sensor-based surveillance society and economy, where our movements, choices, and behaviour are monitored and controlled by algorithms based on previous choices, movements, purchases, likes, or dislikes. Consequently, the growth of addictive persuasive technologies and self-tracking devices, like fitness trackers, not only shapes the user, but also feeds Big Data–harvesting companies. The Attention Economy thereby removes people’s autonomy, as it forces us to constantly look outwardly to validate and give meaning to our lives. This means that we are increasingly losing trust in our experiential selves. Deep Flow is an attempt to rectify these patterns of behaviour. By changing ecologies of attention to ones of experiencing it invites practitioners to look inwardly, to explore and understand the complexity of bodily relations to creative self-expression, health and well-being, lived experience, phenomenal presence, technologies, and nonhuman materials. Using the phenomenological method of looking inwardly, Deep Flow is an ontological-epistemology that studies being and knowing through self-­ reflexivity. In other words, Deep Flow is a way to understand reality through one’s own lived experience of being within it. By being in Deep Flow one forms subjective ways of knowing, creating knowledge from a first-person perspective, rather than a scientific or empirical one. In addition, by following the phenomenological philosophy of Maurice Merleau-Ponty (1945, 1964), we find that there is no separate realm of the mental in which thinking occurs, as we are embodied beings and make sense of the

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world we inhabit through our bodies, thoughts, and lived experiences. These are made manifest through the body, language, or gesture in the world, be they silent, vocalised, or expressed through the creative and healing arts (Purser 2019). This kind of phenomenological approach therefore allows researchers to “focus on how we perceive the world in all its fullness and richness; our lived experience,” subjectivity and embodiment which are “limited by the discursive paradigm” (Boden and Eatough 2014, 161). Deep Flow is therefore different to dance/movement therapy (DMT), as the latter is clearly a bodily/physical practice used in a mental health or psychotherapeutic intervention. DMT tends to lock in “psy-(and sci-)disciplines which underpin such arts therapy” and these “tend to remain locked in a Cartesian framework which struggles to fully integrate our bodily exterior with our psychic interior” (Purser 2021, 4). The focus here is “on the content of artistic expression as a route to the unconscious and on the co-production of art or movement as a route to a therapeutic relationship” (Purser 2021, 4). This means that “creative practice is conceptualised as a way to facilitate verbal dialogue [which] is the true medium of therapy” (ibid.). Deep Flow, on the other hand, enables the researcher to describe lived experience and phenomenal presences that are often too difficult or impossible to describe or write about. It enables the dancer-­ researcher to explore states of embodiment and phenomenal presences that arise during their lived experience of Deep Flow. In addition, the praxis uses multimodal qualitative and quantitative methods to experience, configure, and interpret phenomenal presences by using mediations such as verbal description, drawings, and biometric data to make sense of those experiences. The applied phenomenological approach therefore focuses on the validity of first-person lived experience as the starting point for the construction of knowledge and is a means to discover “dance as a way of healing, and dance as a way of knowing” (Purser 2021, 165).

Phenomenological Research Practice Tentacular Worlding: Performative Phenomenologies Tentacular worlding is a unique methodology that is used to looking inwardly to understand dance as experience (Fraleigh 2018). It is an interdisciplinary research methodology that stresses interrelated ways of knowing, through the exploration of first-person lived experience in embodied

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dance practice. Four methodologies make up tentacular worlding: practice as research (PaR) (Nelson 2013), which enables the construction of knowledge from three ways of knowing through practice; R-reflexivity, a reflexive methodology that Alvesson and Skoldberg (2009) suggest reveals hidden aspects of inner experience as knowledge, doing a phenomenology (Kozel 2007, 2013); and applying a performative phenomenology (Fraleigh 2018). Tentacular worlding is a multimodal methodological approach that is animated or made performative by cat’s cradling (Haraway 2016), the four methodologies described above. Cat’s cradling (Fig. 7.1), a Navajo game of string figures, is relational and interactive, requiring physical movement to shape, reorganise, and reshape patterns, which represents processes of “thinking as well as making practices” (14; emphasis in original). For Haraway (2016, 14), cat’s cradling is a way of thinking, where one is always “giving and receiving patterns, dropping threads and failing but sometimes finding something that works (or) relaying connections that matter”. It is never still. As soon one string figure is created, the next one is about to take shape in the mind of the player. This agency drives the

Fig. 7.1  Ginslov, J. (2017) Dancer Suet-Wan Tsang in Conspiracy Ceremony— HYPERSONIC STATES (photograph)

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game forward, shaping, thinking, enacting, identifying new shapes and ideas as they shape them, revealing that “it matters what knots knot knots, what thoughts think thoughts, what descriptions describe descriptions, what ties tie ties” (12). The methodological approaches are cat’s-cradled into action and creating a tentacular worlding. The term tentacular (Haraway 2016) is derived from the Latin tentaculum, which means feeler, and tentare, to try. It is used in this phenomenological research practice to “try out” new practices, to perform lively interactions between different sets of knowing: embodied knowledge that the dance practitioner brings to the research and knowing that which comes out of such lively interactions. Worlding is derived from Heidegger’s (1962) notion of a subject being-in-the-world and Dempster’s (2000) notion of a sympoietic system, an ecology in which “natures, cultures, subjects and objects do not pre-exist their intertwined worldings” (Haraway 2016, 13). This research therefore involves putting feelers out, to explore first-person experience by looking inwardly during an embodied method of practice within a performative worlding of the human and nonhuman. It imagines “tentacles” to enable the researcher to reach around, between, and connects knowledge sets, that create a performative ecology of concepts, practices, and theories: a tentacular worlding. Practice as Research PaR is a methodological approach that Nelson describes is a way to research through “doing-knowing” ( 2013, 40), rather than “looking from above” (Merleau-Ponty 1964, 160), as used in scientific research. This “discovery through doing” (ibid., 40) makes tacit intelligence and embodied knowledge, often beyond verbal expression and description, visible and readable. It gives expression to things that can only be felt or sensed or revealed by artistic means. These expressions may provide new insight into previous knowledge sets, adding new knowledge, new techniques and practices that evolve in iterative processes encouraged by PaR. Nelson (2013) advocates researching between three types of learning, three different modes of knowledge-making processes: “know-how; know-what and know-that” (ibid., 38), a multimodal epistemological model for PaR. Combined and interrelated, they inform and form a praxis where practice and knowledge work together:

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Know-how is a tacit knowledge gained by knowing-doing that is beyond verbal explanations, such as dance for example; Know-that is traditional academic knowledge, as well as the knowledge gained through reflective processes of a practice such as embodied dance practices that are articulated in words; Know-what is that which is gleaned through reflexivity about the processes of making and its modes of knowing, a combination of know-how and know-that. This provides a dynamic template for “an intellectual diagnostic rigour in the critical reflection on practice, in the movement between the tacit know-­ how and the explicit know-what and in the resonances marked between know-what and know-that.” (Nelson 2013, 60)

R-Reflexivity Tentacular worlding includes a reflexive approach, R-reflexivity, that Alvesson and Skoldberg (2009) suggest is a way to include personal yet critical views and reflections of the researcher who interprets all the knowledge sets they have learned from within a research practice. This reflexivity is a re-presentation of “truth” that illuminates what is left out, personal and marginalised, and aims to “open up new avenues, paths and lines of interpretation to produce better research ethically, politically, empirically and theoretically” (ibid., p. 313). R-reflexivity encourages the researcher to start in some part of the study who then tries to tentatively relate it to the whole. This inspires the researcher to delve deeper into the matter of concern, alternating between part and whole “which brings progressively a deeper understanding of both” (ibid., 92). This approach is abductive, avoiding explanation through authoritarian statements as it is used in real practice and researchers begin to understand things “from the inside” (Alvesson and Skölberg 2009, 93; emphasis in original), which uses subjective experience and insight to generate knowledge. Through participation, the researcher focuses on underlying patterns, becoming reflective and finally reflexive about how their subjective perspective and research methods and findings, interplay. Knowledge created this way collapses notions of knowledge out there and in here, which is implausible when using a phenomenological methodology, as subjective experience is about an embodied subject situated in relation to her world without binary concepts of inner and outer, mind and body, self and world.

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Doing a Phenomenology To look inwardly in dance practice requires the inclusion of phenomenology as a methodology. Susan Kozel suggests sliding across the words, method, and methodology, as method refers to how to do research; phenomenology is a methodology that has at its root “phenomenon,” which means “something that happens”: “It is one of the subjective, experience-­ based methodologies that is used to anchor practice within research, to overcome unhelpful divides between theory and practice, between the mind and the body and between my solitary experience and shared experiences”(Kozel 2013, 4–5). For Kozel (2007, 49), doing a phenomenology is a metaphor to discover an understanding of an ontology by exploring it as something one experiences on a practical level in experimentation. This shifts the view of ontologies as being abstract philosophical knowledge to ones that are performed into being, asking questions about what things are and how they exist. Doing a phenomenology is not a prescriptive method, as practitioners set up their “own phenomenology” (Kozel 2013, 9) based on the project that they are developing. Kozel’s starting point takes Merleau-Ponty’s stance on phenomenology that exists “as a movement before arriving at complete awareness of itself” (1945, viii). One starts by doing, then one becomes aware of doing, and finally one selects “a line of thought, a line of questioning” (Kozel 2007, 50–51) that uses a process of “describing, not of explaining or analysing” (Merleau-Ponty 1945, viii). In this sense, it is different from normal analytic thought and operates “through resonance rather than truth” (Kozel 2013, 7). This orientates pre-reflective experience as being unrestricted by universal and abstract rationalist notions of truth. This phenomenological methodology respects sensations and inner voices, images, liminal qualities, affects, and unformed ideas that emerge directly from the experience of dance. One does not sever all ties to cognition but finds ways for cognition to “coexist with inner and outer experience” (Kozel 2007, 51). These strategies offer articulations of experience that are pre-theoretic and prelinguistic, “undertaken through touch, bodily awareness and physical action” (Midgelow 2018, 76). In other words, through movement practice, knowledge arises by following what emerges and takes shape in the process, without predetermination, and aims to “manifest a rich articulation of the lifeworld or lived experience as it is in the making” (ibid., 61), giving rise to perceptual articulations upon reflection.

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Performative Phenomenology Sondra Fraleigh calls performative phenomenology an “applied phenomenology” that reveals “experiential truth,” through “embodied ways of knowing—or embodied epistemologies—subject to interpretation” (2018, 28). This makes use of interpretation and the subjective position of the author articulating meaning through experiences. This performative phenomenology (Fraleigh 2018, 32) requires dancers to give up the mastery of movement “in favour of listening and discovery” (emphasis in original), which is found by exploring the formlessness of the soma before it is discovered in committed actions of dance controlled by the mind and the body in directed action. In this way the dancer may encounter pathologies or blockages within their own experiential bodies and subjectivity, to find ways of acknowledging and releasing tensions within their own lived experience from within the practice, reflecting Aimie Purser’s (2019, 2021) perspective of dance as a healing art.

Methods of Artistic Research Practice The methods of artistic research practice use embodied methods of dance practice to explore phenomenal presences in Deep Flow. Multimodal qualitative and quantitative data collections methods are then used to configure and interpret the experiences of phenomenal presences, using verbal description, drawings, and biometric data. Analytic methods are used to interpret the data and to configure relations between the media strands that describe those experiences. Embodied Dance Practice The embodied method of dance practice Deep Flow is inspired by the Full Drop (Guðjónsdóttir 2017), which includes myofascial release, meditation, and breathing techniques; Kozel’s (2007, 2017) method of doing a phenomenology; dwelling (Heidegger 1962); listening (Nancy 2007); and direct experiencing (Gendlin 2003), all reflecting Merleau-Ponty’s (1964) strategy of living in artistic practice in a state of flow (Csikszentmihalyi 1990, 2004).

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The Full Drop The Full Drop is part therapy and part artistic practice to discover “new subjective sensorial experience” (Guðjónsdóttir 2019, n.p.). Through myofascial release, based on the Fascia therapy methods of Danis Bois (2020), the Full Drop includes sensorial introspection, internal visualisation techniques, Buddhist meditation, and verbal dialoguing, which aim to guide participants towards a so-called Full Drop into the experiential body. This enables a dancer to explore pre-reflective states of experience, allowing them to directly experience phenomena arising in their lived experience through their entire body. The Full Drop requires an “intensive deep inner listening and surrendering to inner body systems and rhythms” (Fig.  7.2) (Guðjónsdóttir, cited in Kozel et  al. 2019, 4). Through the meditation, the dancers are released from the “outside eye that observes, judges and separates the dancer from the inner experience” and this makes

Fig. 7.2  Spikol, D. (2019) Dancer Jeannette Ginslov in Deep Flow at the Symposium on Digital Urbanism, Blekinge Institute of Technology, Karlshamn, November 14, 2019 (photograph)

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one more “conscious of that which goes on within” (Guðjónsdóttir 2017, 1; emphasis in original). The Full Drop is practised seated, standing, or lying down with eyes closed, doing nothing, but visualising melting one’s bones, fascia, and skin to surrender your will, agency, control, and intention. What comes up in the mind’s eye as sensation or thought comes up, be they moods, feelings, or physical sensations: “that’s all you do … You’re not doing an exercise. You’re just having these thoughts, these visualisations, and then you observe, you allow yourself, to observe, from this neutral eye” (Guðjónsdóttir 2017, 2). Doing a Phenomenology of Dance For Kozel (2017), doing a phenomenology of dance is also a method for reflecting upon the pre-reflective that is invisible. The goal is not to “render the invisible visible, [nor] to strip it of its obscurity in the light of presence and immediacy” (Kozel 2007, 42). In the style of Merleau-Ponty, the knower can never fully disclose nor fully comprehend the unknown or the invisible, as the invisible is close to our bodies and is a “characteristic of Being and no disclosure will make us comprehend it” (Merleau-Ponty 1968, 122). This invisibility is extraordinarily difficult to describe and write about as we are never “entirely able to grasp or to analyse or to divulge” it (Kozel 2007, 42). Therefore, one needs to experience doing a phenomenology in dance practice to get closer to this invisibility, to interpret and understand it. One actively needs to notice “the constant, minute foldings of one thing onto the other, or of one state onto another, within oneself, across oneself and another, oneself and the world […] immanently between one’s vision and movement” (ibid., 207–8). Dwelling Doing a phenomenology of dance may be experienced as dwelling in it (Heidegger 1962). For Heidegger, dwelling does not literally mean being within a physical structure, but is about sensing what if feels like to be present in a place, a form of knowing a world through being in it or experiencing it. Dwelling requires that one slows down and lives in experiencing phenomena on the horizon of experience, rather than “looking from above” (Merleau-Ponty 1964, 160), as a way of researching through the phenomena of lived experience. It requires one to slow down, live in (Heidegger 1962) experiencing presence with the whole body and the emergence of

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phenomena on “the horizon of experience” (Merleau-Ponty 1945, 255) such as pre-reflective sensations, feelings, images, and thoughts. Through mindful iterative practice focusing on the felt senses with one’s body, even in stillness, the emergence of embodied phenomena begins to materialise. You begin to dwell in them as much as they dwell in you. Listening Dwelling and doing a phenomenology develops the notion of listening (Nancy 2007), a form of witnessing embodied experience that turns one’s senses inwardly to listen to the resonances and echoes in one’s body. Listening, for Nancy (2007), is to strain towards a possible meaning on the horizon of what is known and unknown, that which is not immediately accessible. It is a form of direct experiencing leading to sensing holistically that which is impossible to grasp through concepts and may only be sensed through our bodies “living the situation in its whole context” (Gendlin 2003, 2). Applied to dance practice, it calls one to listen to what arises from this sensing and silence (Nancy 2007, 6) and, through this listening from deep within, develop a relationship with one’s own embodied self. Direct Experiencing Doing a phenomenology, dwelling, and listening could be described as direct experiencing of the unsaid or the pre-reflective (Gendlin 2003). Direct experiencing is the messenger of the unsaid, as it cannot be reduced to language and can only be experienced. Therefore, the longer one dwells in and listens to direct experience, the more one experiences the unsaid. Gendlin (2003, 3) describes this as experiencing of the mores of the bodily senses as one’s body-sense expresses and includes “more than you can think by thinking one thing at a time”. These methods of practice turn one’s focus inwardly to listen to and pay more attention to the unsaid and the pre-reflective mores of the body, the bodily senses, thoughts, emotions, moods, and the imagination that may be stimulated. Deep Flow Practice To practise Deep Flow one should be in a quiet room wearing comfortable warm clothing, a heart rate monitor, and an eye mask. A yoga mat should be in place to work on. One stands on the edge of the mat and begins

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Fig. 7.3  Ginslov, J. (2020) Movement hieroglyph (photograph)

using the methods of practice. When feeling one is in a state of flow one steps onto the mat to further experience and deepen states of Deep Flow (Fig. 7.3).

Qualitative and Quantitative Data Collections Methods To make the experiences of the methods of practice understandable, accessible, and visible, a multimodal approach to data collection and configuration is used. Aspects of Boden and Eatough’s (2014) multimodal hermeneutic-phenomenological approach, framed by qualitative social

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science research, are used to explore the aesthetic aspects of language and the drawing of visual imagery to verbally reflect on and visualise the felt senses and fractions of lifeworld (Ashworth 2006). Multimodality thereby encourges the use of various qualitative methods to open the multiple dimensions of experience for exploration, and “combining these so as to work simultaneously across different sensory registers” (Boden and Eatough 2014, 174). A heart rate monitor may also be used to quantify and interpret the heart’s response in relation to the states of Deep Flow. Verbal Feedback Through verbal feedback, a researcher-practitioner “may express something fundamental about their lifeworld” and draw out what they were “not necessarily verbally conscious of” (ibid., 173; emphasis added), but only felt through their senses. If used in dance research it has the potential to move the exploration of lived experience beyond the “reflected upon and languaged dimensions of experience” to additionally explore the “prereflective, bodily, felt experience through various means” (Boden and Eatough 2014, 160). This allows the dancer-practitioner to conduct research from a first-person perspective, to explore dance as experience, enabling them to access and interpret pre-reflective experience through their own felt senses via verbal feedback. Questions are drawn up based on Ashworth’s (2006) fractions of lifeworld to capture verbal feedback from the dancer-researcher after an experience of Deep Flow. This may be captured on camera, transcribed, and later analysed using themes and grouping commonalities around themes that are found in the questions. Comparative analysis provides a way to find relations between the commonalities and states of flow. Visual Imagery According to Boden and Eatough, visual images provide thick depiction and have a way of capturing experiences metaphorically “where multiple meanings may be found” (2014, 163). To visualise the experiential, “movement hieroglyphs” (Stark Smith 2013) and “figuring-figures” (Gansterer et al. 2017) are drawn immediately after the practice of Deep Flow. The practitioner should have direct access to sheets of paper and an assortment of different coloured writing implements available nearby.

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Movement Hieroglyphs Movement hieroglyphs are used to reveal a form of writing from the body to visualise one’s internal “body’s voices” (Steinman 1986, 16). They are made by connecting one’s body to the pen and allowing “a bit of body energy to move on the page” (Stark Smith 2013, n.p.). These are single-line drawings or glyphs, symbolic of one’s internal sensations and state of presence, and are drawn spontaneously without reflection before or after a movement exploration, using a pen as an extension of one’s body (Fig. 7.4). Stark Smith (2013) suggests lying on one’s back,

Fig. 7.4  Ginslov, J. (2020) Figuring-figure (photograph)

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eyes closed, pen and paper at one’s side, breathing gently, becoming aware of the present moment, and then drawing a continuous line across the page, the “energy you feel in your body” (Stark Smith 2013). One then steps back to read and reflect on what was drawn, finding out which hieroglyph resonates within one’s body. Figuring-Figures Figuring, according to Gansterer et al. (2017), starts in the body by paying attention to the experiential shifts, intensities, sensations, or feelings beneath the register of external visibility. Sensitivity to figuring gives rise to figures that are spontaneous drawings-paintings not controlled by a drawer’s cognitive abilities but through their body-mind awareness. It is an “analogon” (Arteaga 2017, 260), analogous to the sensorial experience. Communicated on paper as dynamic vitality, figures reveal implicit expressions relating to the dancer’s lifeworld that include the phenomenological, kinaesthetic, felt experiences, and perceptual shifts in movement, temporality, spatiality, and mood. Figuring-figures may be seen as symbiotic and reciprocal, like a Möbius strip, as “figuring gives rise to figures, whilst they attempt to activate the figures, create the conditions for (further) figuring” (Gansterer et al. 2017, 75; emphasis in original). Interpretation of the Verbal Feedback An analytic method based on selected fractions of lifeworld (Ashworth 2006) is used to analyse a person’s lived experience after transcribing the verbal feedback. The fractions assist one in highlighting recurring or unique verbal descriptions about states of Deep Flow: Analytic Method: Selected fractions of lifeworld to interpret verbal feedback: 1. Selfhood: a sense of subjectivity and the feeling of one’s own presence in a practice; 2. Embodiment: how the situation relates to feelings about one’s own body in a practice and one’s emotional state; 3. Temporality: the present meaning of time and duration, related to past and future; 4. Spatiality: how the space is experienced, how it affects one and how one reacts to it; and 5. Mood as atmosphere: being in a state of mind, the feeling or tone of a situation. 6. Interpretation of the visual imagery

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A hermeneutic-phenomenological framework by Boden and Eatough (2014), inspired by Rose (2001), is used to interpret and analyse the drawings. This results in detailed self-reflexive commentary about “the meanings inherent in each element” (Boden and Eatough 2014, 166), and how they resonate in the body upon reviewing them. As drawing is both a noun and a verb (Guillemin 2004), both the product and the production of the images are considered for analysis. To interpret an image, Merleau-Ponty suggests that the researcher must be-with the image, “see according to, or with it” (1964, 164). Rose (1991, 142) suggests looking at the images to sense “the flux of tension and release, [and] the rhythms of visual forces” resonating through one’s own body. One could adopt a strategy of being-with or dwelling in each image for the analysis of the visual imagery as a means to identify the resonances inherent in the images in relation to the lived experiences, Deep Flow, and how they resonate in the body of the researcher upon reviewing them, as they are the creator of the drawings: Framework for the analysis of the drawings (Boden and Eatough 2014):   1. Contents: describe the distinct elements of the image?   2. Composition: where are the elements laid out on the page?   3. Balance: how do the elements interplay? Is there symmetry or pattern? Equilibrium or disequilibrium?   4. Geometry: what shapes are used and how do they interplay?   5. Materials: which ones are chosen for each element?   6. Texture: what are the textural characteristics of each element?   7. Colour: how are hue (colour), saturation (vividness) and value (lightness/darkness) used?   8. Depth/perspective: how are they created using space and colour?  9. Temporality/dynamism: is there a sense of rhythm or movement? Does the image suggest a still frame, continuity or duration? 10. Focus: what is the visual focus of the image? 11. Expressive content/empathic reaction: what is the emotional tone of the image? What feelings does the viewer have in response (bodily, emotional, memories, images)? 12. Signs/symbolism: are there any overt symbols or cultural references included? 13. Style: does the image shout or is it quiet, or something in between? Does the drawing seem to imitate or reflect a trend in dance practice? 14. Text: has any text been included, for example, a title? Where has this been placed? In what way has it been included? What style, font, capitalisation, etc., is used?

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15. Distraction/noise: do any elements draw your attention away from the main focus? Is there a sense of confusion or clarity in the image? Detailed notes should be made on all the verbal feedback to describe and summarise what it felt like to be in states of Deep Flow. Each element should be used to describe how the images were drawn and composed, what meanings they convey, and how they resonate in the researcher’s body.

Quantitative Data Collection and Interpretation Not much has been said about the role of technology and the use of a heart rate monitor in Deep Flow, as it is beyond the scope of this chapter. However, if used during the practice of Deep Flow, the extruded biometric from the heart is another way to configure lived experience, as biometric data concerns our embodied being. We may perceive numerical data as another bodily text or “an objectified version of our embodiment” (Van Den Eede 2015, 150–1). The biometric data should therefore not be treated scientifically but as another strand of description and interpretation feeding into the phenomenological analyses. The data provides links between the body, methods of practice, and the verbal/ visual configurations of the felt senses, as “the perception and interpretation of the biometric data feeds back to one’s embodied being” (Van Den Eede 2015, 151). Through a process of visual hermeneutics, the data should be read and interpreted as providing feedback about one’s embodied state of being. The data from the Heart Rate Monitor (HRM) is only referred to after a session of Deep Flow, so it is not guiding my embodied experience but reflects Don Ihde’s (1993, 2002) post-phenomenological relations with technology. In this way it disrupts ecologies of attention, in which neoliberal subjects increasingly find themselves measured and shaped by numbers, through addictive interactions with online social media platforms and self-tracking technologies, the Attention Economy. It also challenges ocular-centric practices prevalent in dance-tech practice that privilege vision over bodily experiencing, that are performed in an age that is obsessed and trapped in its “own present spectacle” and “narcissistic parochialism” (Zylinska 2017, 17).

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Conclusion In this chapter I have tried to show how the practice of Deep Flow (Ginslov 2021) is a unique praxis that entwines and explores relations between phenomenological research practices and artistic research practice. It recognises how Deep Flow may fall within a health humanities framework, as a mode of arts-based healing practice. This form of phenomenological practice and research has gained attention in recent years because it “can be a way to explore the increasing complexity of bodily relations” (Kozel et al. 2019, n.p.) to human and nonhuman materials. Above all it is centred on the “validity first-person experience as the basis for the construction of knowledge” (ibid. 2020, n.p.) that recognises how phenomenologies are performed and configured, bringing new relations between the human and nonhuman into being. This, according to Nelson (2013), is a form of liquid knowledge that is produced by cat’s cradling several research methodologies and practices, a bricolage or a tapestry of knowledge that crosses over and affects other knowledge sets, be they therapeutic or artistic. It thereby challenges the longer established medical humanities (Crawford 2020). Using novel, interdisciplinary, non-hierarchical methodologies and methods, it shifts the field of health beyond the medical conception of health and well-being by “rejecting a pecking order for who controls or mandates the application of the arts and humanities to improve the human condition” (ibid. 1). Understanding this positioning, the researcher in Deep Flow pays attention to these perspectives from a meta-perspective and understands how they interplay with each other in relation to the whole without letting any of them dominate. It is an emergent structure of complex, dense interpretations, understandings, and outcomes of overlapping, developing perspectives, research methods, and performative phenomenologies of dance, art, and healing practices.

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Journal of Qualitative Studies on Health and Well-Being 1 (1): 212–225. https://doi.org/10.1080/17482620600967786. Boden, Z., and V.  Eatough. 2014. Understanding More Fully: A Multimodal Hermeneutic-Phenomenological Approach. Qualitative Research in Psychology 11 (2): 160–177. https://doi.org/10.1080/14780887.2013.853854. Bois, D. 2020. Fasciatherapy Is an Individual-Oriented Form of Physiotherapy. Accessed October 29, 2020, from https://www.fascia.be/en/fasciatherapy/history Clift, S. 2014. Creative Arts as a Public Health Resource: Moving from Practice Based Research to Evidence-Based Practice. Perspectives in Public Health 132 (3): 120–127. https://doi.org/10.1080/17533015.2014.886146. Crawford, Paul. 2020. Introduction: Global Health Humanities and the Rise of Creative Public Health. In The Routledge Companion to Health Humanities. New York: Routledge/CRC Press. Csikszentmihalyi, M. 1990. Flow: The Psychology of Optimal Experience. London: HarperCollins Publishers. ———. 2004. Flow, the Secret to Happiness. California: Accessed January 28, 2020, from https://www.ted.com/talks/mihaly_csikszentmihalyi_flow_the_ secret_to_happiness?utm_campaign=tedspread&utm_medium=referral&utm_ source=tedcomshare Dempster, B. 2000, July. Sympoietic and Autopoietic Systems: A New Distinction for Self-Organizing Systems. In International Society for Systems Studies Annual Conference, Toronto. Toronto: ISSS. Fraleigh, S. 2018. Back to the Dance Itself: Phenomenologies of the Body in Performance. Chicago: University of Illinois Press. Gansterer, N., E.  Cocker, and M.  Greil, eds. 2017. Choreo-graphic Figures: Deviations from the Line. Berlin/Boston: deGruyter Publishers. Gendlin, E. 2003. Beyond Postmodernism: From Concepts Through Experiencing. In Understanding Experience: Psychotherapy and Postmodernism, ed. R.  Frie, 100–115. London: Routledge. Ginslov, J. 2021. Deep Flow: A Tentacular Worlding of Dance, Biosensor Technology, Lived Experience and Embodied Materials of the Human and Non-humankind. PhD Dissertation, London South Bank University. Guðjónsdóttir, S.  M. 2017. The Full Drop Meditation Session Voice Recording. Unpublished. Guðjónsdóttir, M. S. 2019. Conspiracy Archives a Process Archive of an Archival Process. Kozel, S., Guðjónsdóttir, M.  S., Ginslov, J. and Lim, K.  Accessed January 28, 2020, from https://nivel.teak.fi/adie/conspiracy-­archives/ Guillemin, M. 2004. Understanding Illness: Using Drawings as a Research Method. Qualitative Health Research 14 (2): 272–289. https://doi. org/10.1177/1049732303260445.

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Haraway, D. 2016. Staying with the Trouble: Making Kin in the Chthulucene. Durham and London: Duke University Press. Heidegger, M. 1962. Being and Time. Oxford: Blackwell Publishing. Ihde, D. 1993. Postphenomenology: Essays in the Postmodern Context. Evanston: Northwestern University Presss. ———. 2002. Bodies in Technology. Minneapolis and London: University of Minnesota Press. Kozel, S. 2007. Closer: Performance, Technologies, Phenomenology. Cambridge, MA: MIT Press. ———. 2013. Lecture: Phenomenology – For the Course Practice Based Research in the Arts, Stanford University. Accessed March 15, 2018, from http://medea. mah.se/2013/12/susan-­kozel-­phenomenology-­practice-­based-­research-­arts/ ———. 2017. Re-Embodiment: New Strategies for Teaching Embodied Interaction. Denmark: Cumulus International Association of Universities and Colleges of Art, Design and Media. Kozel, S., Guðjónsdóttir, M. S., Ginslov, J. and Lim, K. 2019. Conspiracy Archives a Process Archive of an Archival Process. Accessed January 28, 2020, from https://nivel.teak.fi/adie/conspiracy-­archives/ Merleau-Ponty, M. 1945. Phenomenology of Perception. English edition first published 1962 ed. London and New York: Taylor and Francis e-Library, 2005. ———. 1964. Eye and Mind. In The Primacy of Perception, 121–148. Evanston: Northwest University Press. ———. 1968. The Visible and Invisible. Evanston: Northwest University Press. Midgelow, V.L. 2018. Improvisation as Paradigm for Phenomenologies. In Back to the Dance Itself: Phenomenologies of the Body in Performance, ed. S. Fraleigh, 59–77. Chicago: University of Illinois Press. Nancy, J.L. 2007. Listening. New York: Fordham University Press. Nelson, R. 2013. Practice as Research in the Arts: Principles, Protocols, Pedagogies, Resistances. London, UK: Palgrave Macmillan. Purser, A. 2019. Dancing Intercorporeality: A Health Humanities Perspective on Dance as a Healing Art. Journal of Medical Humanities 40: 253–263. Purser, Aimie. 2021. Movement as Method: Some Existential and Epistemological Reflections on Dance in the Health Humanities. Journal of Medical Humanities 42: 165–178. https://doi.org/10.1007/s10912-­021-­09679-­1. Rose, G. 1991. Abstract Art and Emotion: Expressive Form and the Sense of Wholeness. Journal of the American Psychoanalytic Association 39: 131–156. ———. 2001. Visual Methodologies: An Introduction to the Interpretation of Visual Materials (first ed.). London: Sage Publications Ltd. Stark Smith, N. 2013. Teaches “Hieroglyphs”- Embodied Activity #1 for Meta-­ academy(at)bates (2013) https://youtu.be/hS1MUpltx_M Video Directed by Marlon Barrios Solano. Bates Dance Festival 2013: Creative Commons Attribution licence.

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Steinman, L. 1986. The Knowing Body: Elements of Contemporary Performance and Dance. Boston: Shambhala Publications. Van Den Eede, Y. 2015. Tracing the Tracker. In Postphenomenological Investigations: Essays on Human-Technology Relations, ed. R.  Rosenberger and Verbeek, 143–158. London: Lexington Books. Zylinska, J. 2017. Nonhuman Photography. Cambridge, MA: MIT Press. Jeannette Ginslov is an artist, researcher, and scholar exploring dance, Screendance, and embodied technologies. In 2021 she was awarded a PhD from London South Bank University, where she researched “Deep Flow: A Tentacular Worlding of Dance, Biosensor Technology, Lived Experience, and Embodied Materials of the Human and Non-humankind.” She has an MSc in Screendance, Dundee University, Scotland, and an MA in Choreography, Rhodes University, South Africa. Ginslov works on “CATALYSTS—Somatic Resonance,” an Mixed Reality (MR)/Augmented Reality (AR)/Artificiial Intelligence (AI) installation, and “Nanocosmic Aesthetics,” selected for the Open Call The European Spallation Source (ESS) & InterArts Centre Residency (https://www.iac.lu.se/news/ess-­ residency-­artists-­selected). In 2022 she joined the School of Arts and Communication, Malmö University, Sweden. http://www.jginslov.com/

CHAPTER 8

Interdisciplinarity, Transdisciplinarity, and Health Humanities: Eye Tracking, Ableism, Disability, and Art Creation Christian Riegel and Katherine M. Robinson

Introduction: Health Humanities and Interdisciplinarity Health humanities is a field of intellectual inquiry and application that is conceived and constituted out of multiple disciplinary constellations that focus on the intersection of considerations of health and the humanities. Health is understood expansively, as are the humanities (Jones et al. 2014; Crawford et al. 2015; Banner 2019; Klugman and Lamb 2019; Crawford

C. Riegel (*) Department of English, Campion College, University of Regina, Regina, SK, Canada e-mail: [email protected] K. M. Robinson Department of Psychology, Campion College, University of Regina, Regina, SK, Canada e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_8

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2020), and thus disciplinary constituencies are varied depending on the specific question, intervention, or application. The health humanities thus inherently draw from multiple disciplinary orientations, drawing from concerns in individual disciplines that intersect with health and humanities. The health humanities are, further, exceptionally interdisciplinary and transdisciplinary in that they require integration of multiple knowledge domains alongside the disciplinary understanding, methodology, epistemology, and practices that define discipline-based work. They can, in short, only be understood in the context of such interactions of multiple disciplines even when they are practised with a disciplinary focus such as, for example, the study of pathographies, which are “autobiographical accounts of … [patients’] experience of illness and treatment” (Hawkins 1999a, 127), understood to emanate from literary studies (Frank 1995; Couser 1991; Hawkins 1999a, 1999b). To fully encompass the implications of any given pathography requires the methods of literary studies and contextualizing within a health and/or medical focus, be it breast cancer elegies or novels that examine mourning processes, or some other health-related consideration (see, e.g., Riegel 2017, 2020). Jones, Wear, and Friedman describe medical humanities, the precursor to health humanities, as “an inter- and multi-disciplinary field” (2014, 6), and the health humanities take a broader emphasis to embrace interdisciplinarity (Crawford et  al. 2010, 4). Olivia Banner notes that “health humanities educators are a diverse group of bricoleurs” (2019, 1) reinforcing the multitude of disciplines, perspectives, and approaches out of which those who are situated in health humanities construct their teaching, research, practice, and exploration. Klugman and Lamb argue that “health humanities is transdisciplinary” (2019, 6), as the field reaches beyond not only disciplinary boundaries but also outside formally academic realms into professional and communal spaces to include “patients, practitioners, communities” (7). The space between interdisciplinarity and transdisciplinarity requires further reflection in health humanities research and teaching given the multiple perspectives on the relation between the various academic disciplines, professional domains, and community contexts that contribute to health humanities. In this chapter we examine questions of interdisciplinarity and transdisciplinarity as they apply to health humanities by articulating the contours of interdisciplinarity and transdisciplinarity, and by considering them in relation to a research project on eye movement art creation, technology, ableism, and disability in our interdisciplinary and

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transdisciplinary research lab, the Interactive Media, Poetics, Aesthetics, Cognition, and Technology Lab (IMPACT) at the University of Regina, Canada. Our project draws from multiple disciplines and academic realms while also engaging with disability communities. Crawford and co-authors (2015, 2020) assert the revolutionary and catalytic forces of the health humanities as agents of academic, research, social, and practical change. The health humanities have the potential for health to resituate how we recognize the role of the humanities in all aspects of health, providing potential for significant influence in a range of domains “for a more extensive, mutual and applied field of work for delivering better social and cultural futures” (Crawford et al. 2015, 19). Because of their expansive application, the health humanities by their nature rub against conventional assumptions about discipline-based work. Indeed, they presuppose that fully discipline-oriented work is impossible within a health humanities context: to larger and lesser degrees, comingling of, bridging between, fusion of, or knowledge sharing between disciplines occurs as an organic process of working in the health humanities. Additionally, due to the social, professional, and other practical applications of the health humanities, the social realm is implicated in the interdisciplinary impetus, thus often reaching into transdisciplinary concerns (Klugman and Lamb 2019, 6–7).

Interdisciplinarity As Huutoniemi et al. (2010) point out, the concept of interdisciplinarity is fraught with challenges of definition and thus the boundaries of this term are at times contested in the scholarly literature: “Interdisciplinarity is … best understood not as one thing but as a variety of different ways of bridging and confronting the prevailing disciplinary approaches” (80). Siedlok and Hibbert (2014) remark that “the inherent complexity of interdisciplinary research necessarily defies a single approach, resulting in a rather muddled picture of a number of different, coexisting modes of interdisciplinary work” (195). As a starting point, interdisciplinarity can be seen simply as a type of research that “transgresses traditional disciplinary boundaries” (197), and more complexly as taking “place at multiple sites and on multiple levels, and in multiple types and forms. Ironically, interdisciplinarity is divided into scientific, humanistic, social scientific, and forms which not even its most ardent practitioners and proponents can easily transcend” (Frodeman et al. 2010, ix). While beyond the scope of this chapter, it is worth noting that considerable scholarly discussion has

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taken place to define the concept of interdisciplinarity (e.g. Gibbons 1994; Balsiger 2004; Frodeman et al. 2010; Siedlok and Hibbert 2014; Aldrich 2014; Ledford 2015; Trussell et al. 2017; Marrone and Linnenluecke 2020). Our specific interest is to recognize some of the qualities of interdisciplinarity that are especially relevant in a health humanities context, and then more specifically in the case of our work. Interdisciplinarity is particularly useful to the relatively young field of the health humanities as it emphasizes the forward-thinking nature of the field. As Frodeman (2010) notes, “[A]t its best, interdisciplinarity represents an innovation in knowledge production—making knowledge more relevant, balancing incommensurable claims and perspectives, and raising questions concerning the nature and validity of expertise” (xxix). Constituted in inherently interdisciplinary ways, a health humanities approach in our consideration is catalysed by articulations of knowledge for the sake of application and for further understanding of how the field itself is developing and comprehended. The integrative nature of the health humanities is well defined by Frodeman’s characterization of interdisciplinarity as multi-modal: [S]uccess at integrating different perspectives and types of knowledge— whether for increased insight, or for greater purchase on a societal problem—is a matter of manner rather than of method, requiring a sensitivity to nuance and context, a flexibility of mind, and an adeptness at navigating and translating concepts. (xxxi)

Those engaged in health humanities work are perpetually in such a process of navigation and translation in the service of intersections of humanities and health, and the work functions, as Frodeman notes, apophatically: “it announces an absence, expressing our dissatisfaction with current modes of knowledge production” (xxxii). The mixing of disciplines, disciplinary practices and ways of seeing things, operates organically to fill voids of knowledge that the health humanities approach with the promise of limitless novelty rather than the disciplinary bounds that constrain conventionally. To think in interdisciplinary manners, then, requires us to think of the world ecologically as “everything is implicated with everything else” (xxxiv). Fundamentally, “interdisciplinarity is a means toward the end of preserving or achieving the good life in a complex, global, rapidly innovating society” (xxxii). By default, health humanities are interdisciplinary in their interaction with questions of health (Charise 2017, 433): how we better understand the human position in

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relation to multiply constituted (socially, culturally, historically) elements of health, and interdisciplinarity has the advantage to address the “larger responsibilities of how knowledge contributes to the creation of a good and just society” (xxxiii). As Albert et  al. (2020) remark, the aims are broad: “interdisciplinary research generates a better understanding of the world” (756). Advantages are the ability to approach major issues in multiple ways, as Okamura (2019) states: “Many of the world’s contemporary challenges are inherently complex and cannot be addressed or resolved by any single discipline, requiring a multifaceted and integrated approach across disciplines” (2). The result is domains “of inquiry that include academics from a range of disciplines as well as stakeholders not engaged in discipline-based knowledge production, such as professionals, administrators, and policymakers, all of whom focus on a common subject with the aim of advancing both theory and practice” (van Enk and Regehr 2018, 340 qtd. in Albert et  al. 2020, 756). Knowledge creation is thus more democratic (Albert et al. 2020, 756), which is suited to the aims of health humanities work (Crawford et al. 2015, 19; Crawford 2020).

Transdisciplinarity Where interdisciplinarity functions as knowledge production that crosses or bridges disciplinary boundaries, transdisciplinarity “makes knowledge products more pertinent to non-academic actors” (Frodeman 2010, xxx), making it a useful concept for health humanities as they reach into professional, personal, and social realms, finding relevance for society expansively in ways that discipline-bound approaches rarely achieve. The advantage of transdisciplinarity is its ability to transcend boundaries to develop “increasing coherence, unity and simplicity of knowledge in which disciplinary boundaries become irrelevant or are radically reshaped” (Siedlok and Hibbert 2014, 198). Research paradigms and institutional landscapes are reconfigured leading to permanent impacts (198). A problem-­solving perspective in the real world “is an important driver for integrative and collaborative research” that “transgresses academic cultures and engages in mutual learning with societal actors in order to account for barriers in real life and possible unintended effects of problem solving.” Transdisciplinary attitudes to knowledge production respond “to societal needs for solving, mitigating, or preventing problems such as violence, disease, or environmental pollution.” Integration of disciplinary practices and implementation of knowledge are key concerns in

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transdisciplinary approaches (Hadorn et al. 2010, 431). Klein reinforces the transgressive nature of transdisciplinarity that leads to the “cultural study of social and intellectual formations” (2010, 25). Nicolescu underscores the integrative nature of transdisciplinary work that not only mixes disciplines but moves beyond disciplinary specificity: “Transdisciplinarity concerns that which is at once between the disciplines, across the different disciplines, and beyond all disciplines” (2014, 19). The combination of interdisciplinarity and transdisciplinarity as features of the health humanities reflects a field that innovates at the nexus points of health and humanities, bridging disciplines and academic domains with social contexts. These considerations are of particular interest to us in our work in the IMPACT Lab as we aim to conjoin digital technology with accessibility and human experience with art creation, bringing together disciplinary expertise in literary study, digital humanities, cognitive psychology, visual and digital art, and hardware and software engineering to address challenges in how we understand the interaction of individuals with limited mobility and technology and in how we understand how individuals experience art creation. Our work thus fits with Roderick J. Lawrence’s understanding that “transdisciplinary approaches combine more disciplinary contributions in order to generate a more comprehensive level of understanding by applying an enlarged systemic framework of several disciplinary and interdisciplinary contributions” (2010, 125). Transdisciplinary work is especially well suited to address complex real-world issues, such as public health challenges, and transdisciplinary work provides “an innovated framework for participatory research … rather than focusing on academic research” only (Lawrence 2010, 126; Klugman and Lamb 2019, 6–7). Interdisciplinary researchers thus move beyond the bounds of academically-oriented research practices to “incorporate a combination of concepts and knowledge not only used by academics and researchers but also other actors in civic society, including representatives in the private sector, public administrators, and the public” (Lawrence 2010, 126). Our individual disciplinary orientations in literary and digital humanities and in cognitive developmental psychology on their own fail to account for the integrative nature of the approach, which is methodologically and epistemologically driven by a straightforward articulation of a research challenge: to create technology tools that require only eye movements. To address the challenge requires integration of technology development, knowledge of disability studies and ableism, considerations of art and aesthetics, social science research methodologies, and collaboration with

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community as integral partners in research, with no particular one of these domains holding primacy in how the research project unfolds.

Eye Tracker Art Creation The authors are engaged in a multi-year programme of research that has as its core interest the development and deployment of art creation that uses only eye movements, as well as the study of the user experience and best practices for digital technology research and disability. We develop custom software for, and hardware adaptations of, eye trackers to allow for art creation that only requires eye movements. The research has implications for individuals with limited mobility as it makes art creation accessible, and it has resonances for how disability is conceived and understood in the context of ableism. Developing art creation tools addresses issues relating to the purposes of technology in relation to disability. Key purposes of creating with the eyes only refer to enjoyment of artistic creation and aesthetic pleasure, which are often subordinated to the practical purposes of assistive devices and the challenge of problem-solving as the goal of technology development in the realm of disability (Clare 2017). The programme of research arises not directly out of the disciplinary practices of the authors, but rather out of shared interest in harnessing the potential of eye tracking technology for research and applied purposes. Katherine M.  Robinson is a cognitive developmental psychologist and Christian Riegel is situated in literary studies, digital humanities, and health humanities. The work on eye trackers and art creation developed over a multi-year period to occupy an interdisciplinary and transdisciplinary space that is best accounted for within a health humanities context. The purpose of the remainder of the chapter is to outline the development of our work into the health humanities realm. In 2010, we received a Canada Foundation for Innovation grant to construct and equip the IMPACT Lab. The goal of the lab was to develop research streams that used eye trackers as data collection tools as well as to integrate other digital resources. Robinson’s primary interest was to conduct studies that examined aspects of mathematical cognition, and Riegel was interested in examining how individuals read poetic and other forms of literary language on digital screens, and their collaboration related to combining cognitive psychology with the literary study of poetry. Several studies were conceived that examined cognitive processes relating to how individuals read conventional and postmodern poetry. This work can be

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defined as primarily multi-disciplinary as each researcher brought their own disciplinary lens to bear on the creation of the research questions. However, as we explored the possibilities of the large data sets that our eye tracker generated (Riegel et al. 2017), we realized that there was much potential beyond the conventional social-science-oriented statistical analyses initially considered. Indeed, by taking the data and recasting it in visualizations, we argued that new understandings of the data could be developed that relied on aesthetic and humanities approaches. As we noted, the “particular configuration of researchers from divergent disciplinary practices … discovered that the technology and methodology of the lab opened up interdisciplinary and collaborative possibilities that were not imaginable at the outset of the lab’s planning” (Riegel et al. 2017). We thus moved into an interdisciplinary mode exploring new research epistemologies: “Eye tracking technology permits volumes and types of data that were hitherto unimaginable, and the software tools of an eye tracker … allow for interesting and useful empirically based understandings of the data. Yet, in our explorations of the data we conclude that a purely empirically based output only takes us so far: the data can be put to further uses, pushing into the realms of data visualisation and art, as well as into epistemological considerations for the processes involved in managing and exploring data” (Riegel et al. 2017). One study we conducted asked participants to read conventional poetry (e.g. a Shakespeare sonnet) and postmodern poetry (e.g. John Mac Low’s “Words nd Ends from Ez”) while we tracked their eye movements. We used conventional eye tracker data from X and Y axis gaze points and produced visualizations whose purpose was to “serve as alternative interpretive frames to traditional narrative-driven modes of scholarly expression, with the further potential to be conceived as aesthetic objects” (Riegel et al. 2017). For example, eye tracking data of 21 participants reading a Shakespeare sonnet created a 79,000-line two-column data file. The data shows that readers of the sonnet maintain a tight focus on the lines of poetry, thus reinforcing strong attention to the material. Our visualization recast the data so that the image reflects focus and attention. The longer lines in the image reflect stronger focus and attention points in the data. When the same participants read the postmodern poem, which would be unfamiliar in form, content, and comprehensibility in comparison to Shakespeare, the data shows that readers pay little attention to the lines of poetry and there are few points of focus. The resulting visualization

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contains short lines to reflect this lack of focus and attention (see Riegel et  al. 2017 for visualizations). The visualizations thus serve as aesthetic alternatives to the narrative modes common to scholarly work. This study suggested the promise of eye tracker data in the aesthetic realm, and we quickly realized that there was potential to employ live data streams generated by eye movements for the purpose of art creation. Artist Jody Xiong in her work “Mind Art” and artist Lisa Park in “Eunoia I & II” provided exciting models for how brain waves can be used as live data streams to create art and we felt that eye movement data used as a live data stream also had the potential for art creation. If art could be created by eye movements only, then there were possibilities for individuals with limited mobility to create art. This moved our research questions out of the formality of lab-driven (and thus university) research and into the community. We conceived and received a Social Sciences and Humanities Research Council of Canada (SSHRC) Connection Grant that had as its goal to connect with members of our local disability communities as we explored what the possibilities for the technology were. We held a hackathon with a humanities orientation whereby humanities, social science, and art students were teamed with software coders and individuals drawn from disability community groups. The core challenge of the hackathon was to give each team some base code and an eye tracker and to ask them to put together a functional art creation tool. From the researcher’s perspective, we were interested in further understanding interdisciplinary research epistemologies: how would each member of a team contribute to how the developmental process unfolded, and to the end product? Work that had implications for people with disabilities, we realized, could be best done in coordination with non-academic partners and indeed relied on their knowledge and expertise to be effective, equitable, and meaningful. Informed by what we learned from our Connection Grant, we applied for and received a larger multi-year research grant from SSHRC titled “‘Disrupt/ability’: Disability, Ableism, Eye-Tracking Technology and Art Creation.” The purpose of the grant was to further develop eye tracking technology for art creation with the eyes only. As the title indicates, there are implications for individuals with limited mobility, generating questions about how we conceive of disability in relation to assistive technology and to considerations of health. Kivits et  al. (2019) indicate common approaches to defining health-related research questions as being in search of “population health improvement” and “positive health actions,” which

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are relevant in many health contexts but that are problematical in the context of disability. As they remark: Public health constitutes a field of choice for developing interdisciplinary research. Targeting population health improvement necessarily entails embedding research and intervention within a variety of complementary disciplinary approaches. Medicine (and its scientific and professional domains), psychology, epidemiology, economics, social and political sciences, health services research, humanities, geography and legal science all involve research perspectives conducive to the observation, analysis, understanding and interpretation of health facts. When implementing and directing efficient and positive health actions for population, communities and people, the fact of working across disciplines—whether health be their main research focus and health improvement their aim—provides rich, innovative and relevant data for public health intervention. (1061)

In Brilliant Imperfection: Grappling with Cure, Eli Clare (2017) notes that health when related to people with disabilities is oriented towards healing and curing: “Overcoming bombards disabled people” (8); “Overcoming is a peculiar and puzzling concept. It means transcending, disavowing, rising above, conquering” (9). Where Kivits et al. (2019) situate public health within an interdisciplinary frame that moves towards solving health problems, we situate our work within a transdisciplinary health humanities perspective that prioritizes the value of engaging in artistic creation for its own sake. The purpose of our eye movement art creation tools is to foster the enjoyment of creativity as a primary goal, thus avoiding ableist views of what technology’s purposes might be in relation to people with disabilities. Eye tracking technology is not about overcoming any perceived bodily or mind deficiency but rather to recognize eye movements as one ability that can be used to create art. This is in keeping with Clare’s mistrust of the goals of health interventions as being geared to improve the lives of people with disabilities. He writes: Sometimes disabled people overcome specific moments of ableism—we exceed low expectations, problem-solve lack of access, avoid nursing homes or long-term psych facilities, narrowly escape police brutality and prison. However, I’m not sure that overcoming disability itself is an actual possibility for most of us. Yet in a world that places extraordinary value in cure, the belief that we can defeat or transcend body-mind conditions through

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i­ndividual hard work is convenient. Overcoming is cure’s backup plan. (2017, 10)

A transdisciplinary health humanities approach, then, serves as useful mode to avoid ableist perspectives on disability. Developing technology that is of appeal to individuals with limited mobility needs to recognize the inherent biases of ableist thinking in health and medical research, and art creation as an enjoyable and fulfilling practice for its own sake proves to be an exceptional intersection of health and humanities. We have described our work as follows: Our current research project is interested in the concept of ability as it relates to how we consider the embodied nature of individuals: we are in particular interested in how art-making can be a disruptive process, signaling how we understand the relation of the body and its many functions to art making, and how certain kinds of digital technologies can be situated in relation to these considerations. (Riegel and Robinson, 2020)

The concept of ableism, defined in relation to the concept of disability, is central to our work. Bogart and Dunn (2019) define ableism “[a]s stereotyping, prejudice, discrimination, and social oppression toward people with disabilities … . People with disabilities are broadly defined as those who have conditions that are commonly perceived to be disabilities by the general public, including physical, sensory, and intellectual disabilities, in addition to invisible disabilities, chronic health conditions, psychiatric conditions, and others” (650). To be defined as being disabled is to be defined against a socially defined set of norms relating to bodies and minds. Fiona Kumari Campbell (2001) influentially recognizes the normalizing nature of ableism when she defines ableism as “[a] network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then is cast as a diminished state of being human” (44). To be disabled is to intrinsically be in deficit in relation to someone who is deemed able-bodied or able-minded. A disabled person is “an intrinsic bearer of a deficit. The dependency-­ relationship of a person is negatively valued: ‘normal’ means being an autonomous agent, where a centrally valued notion is that the autonomous agent is independent, not dependent upon others” (Carnevale 2015). Ableism others people with disabilities, becoming “ideas, practices,

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institutions and social relations that presume ablebodiedness, and by so doing, construct persons with disabilities as marginalized … and largely invisible ‘others’” (Chouinard 1997, 380, qtd. in Bogart and Dunn 2019, 651; see also Campbell 2008; Davis 1995; Friedman and Owen 2017; Kafer 2013; Keller and Galgay 2010; Ostrove and Crawford 2006; Overboe 1999; Palombi 2012; Rogers and Blue Swadener 2001; Snyder and Mitchell 2006; Thomas 2004). Our research project is thus inherently interested in the relationship of art making to a series of concerns relating to ableism and disability, including how interacting with digital technology in a disability context is often matched with the concept of assistance via technology, as well as with overcoming disability that might be deemed a health concern from an ableist perspective. Rather than being “assistive” the technology we create is designed purely for creative purposes so individuals can express themselves and find enjoyment in creativity for its own sake. Our research studies focus on the user experience of various art-making programs, on hardware and software interfaces, and on the development of eye training modules (eye control is taxing and difficult, especially initially), and the data we collect in these studies is geared to improving the experience of making art with the eyes only rather than to improve the individuals who engage in the art making. Indeed, focus group exercises we have conducted demonstrate that apart from the need to be able to move a single eye, no other physical movement is required to use our art-­ making programs, and that as such largely the matter of embodiment is removed. Participants with only the ability to move their eyes have found the experience of participating in focus groups to be interesting from a social perspective as every user of the eye trackers finds eye control challenging and, essentially, all users are in equally weak positions. Once users gain experience, the level of achievement in terms of controlling what is created with the eyes only is disconnected from bodily function (apart from the need to be able to move one eye), erasing ableist notions of physical superiority. Chris Hayes notes that technology “has the potential to destabilise the ableist assumptions at the heart of the art world, supporting artists and audiences with disabilities in radical new ways” (Hayes 2018 qtd. in Riegel and Robinson 2020). Art making through eye tracking technology thus has the potential to “serve as such a radical disruptive tool” (Riegel and Robinson 2020). What, then, does a transdisciplinary health humanities project look like in our context? It develops in a community-oriented manner, involving

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focus groups, individual sessions, and public events that draw on the experiences of users as they interact with our technology to help inform further research questions, outcomes, and understanding. Such research draws on what disabled artist Kristina Veasey deems as necessary to develop technology used by people with disabilities: “It’s important to involve disabled people in the development of that if you want to be relevant and impactful” (Hayes 2018). Thus, it works to resist ableist approaches to technology development, working to ensure the art-making experience is divorced from any notions of being assistive and/or curative. From a technology perspective, we seek to minimize cost in recognition that expense is a barrier to accessibility with much technology developed in relation to people with disabilities (Uslan 1992; Kaye et al. 2008; Borg and Östergren 2015; Dobransky and Hargittai 2016; Soong et  al. 2018; Ward-Sutton et  al. 2020). We have harnessed the power of low-cost gaming eye trackers by creating custom software programs that allow participants to use line drawing to create figures, to create abstract art by using colour dots and a colour picker, and to create colour-by-number art, including embedding multiple such figures on a broader digital canvas (for examples, see mindartlab.com). The entire experience is designed to be touch-free so that no assistance is needed to start a program, to navigate a program, to save or print a created work of art, and to close the program. Our project functions in a transdisciplinary manner in that its epistemology, methods, and disciplinarity exceed the specificity of our individual disciplinary grounding. It is informed fully neither by cognitive developmental psychology, nor by literary studies and the digital humanities, even when these disciplines provide insights into the project’s conception. We cannot, after all, sidestep our disciplines entirely, nor is that the aim of transdisciplinary work. Rather, such work is geared to address a challenge, which in our case relates to the potential for eye movements to be used for art creation. Leafing out of this challenge are considerations of disability and ableism, as well as creativity and aesthetics. Digital technology plays a central role in how we approach the challenge given that eye movements must of necessity be captured by digital technology.

Conclusion Connected to any use of technology in a disability context are concerns of accessibility and the uses of technology, which should always be understood through the lens of ableism to avoid discriminatory practices

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relating to technology development. The health humanities provide a useful field to situate our work given their transdisciplinary potential, as we discuss above. They allow researchers such as us to address research challenges through other disciplines outside our areas of expertise, combining them with our specific knowledge. Neither of us is an expert in hardware or software development, yet these are key elements of the project. This move to integrate expertise outside our disciplines meshes with what Andrea Charise (2020) sees as an important challenge facing health humanities work, which is to break down the “theory-application divide” as it is not “a productive driver for health humanities, nor does it make much sense to maintain such [a] partition when mapping the future directions of the field.” Our community participants come to our endeavours with eye trackers not as subjects of our research to be studied, nor with any specific theoretical disciplinary grounding. Rather, their participation in our project involves experiencing the technology, and as they interact with it, they provide us with their insights on how it functions and how it could be further developed. Such research fits uncomfortably within research conceptions that require solutions to problems, or as Eli Clare (2017) terms it in relation to disability “cure”. As researchers, transdisciplinarity affords a way to conceive a project that relies on community participation to address the broader social challenge of how we perceive disability and how ableism pervades health research rather than of disability as a problem to be solved. Creating art with one’s eyes is not a solution to a definable problem, but at its simplest an opportunity to be engaged in art making as a valuable experience in and of itself. Charise (2020) challenges the contours of the health humanities by noting that they “will only realize … [their] promise be recognizing, and being legible to, the multiplicity of sites and communities where such work is needed, shaped, and experienced.” Such work then needs to embrace transdisciplinarity, erasing the conventional boundaries of the disciplines, and the divisions between academic researchers, practitioners, and broader communities. As Robert J.  Lawrence (2010) remarks, transdisciplinary approaches offer practical solutions that require “the capacity of teams of researchers and representatives of civil society to join their research objectives by building dialogue” (129). Acknowledgements  The authors acknowledge funding from the Canada Foundation for Innovation (CFI) and the Social Sciences and Humanities Research Council of Canada (SSHRC) that supported this research. Open Access funds

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provided by the Office of the Vice President (Research), University of Regina, the Office of the Dean, Campion College, and the Social Sciences and Humanities Research Council of Canada.

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Crawford, Paul, Brian Brown, Victoria Tischler, and Charley Baker. 2010. Health Humanities: the Future of Medical Humanities? Community Mental Health Review 15 (3): 4–10. https://doi.org/10.5042/mhrj.2010.0654. Crawford, Paul, Brian Brown, Charley Baker, Victoria Tischler, and Brian Abrams, eds. 2015. Health Humanities. Basingstoke: Palgrave Macmillan. Davis, L.J. 1995. Enforcing Normalcy: Disability, Deafness and the Body. Ann Arbor: Verso Press. Dobransky, Kerry, and Eszter Hargittai. 2016. Unrealized Potential: Exploring the Digital Disability Divide. Poetics 58: 18–28. Frank, Arthur. 1995. The Wounded Storyteller. Chicago: University of Chicago Press. Friedman, Carli, and Aleksa L. Owen. 2017. Defining Disability: Understandings of and Attitudes Towards Ableism and Disability. Disability Studies Quarterly 37 (1). https://doi.org/10.18061/dsq.v37i1.5061. Frodeman, Robert. 2010. Introduction. In The Oxford Handbook of Interdisciplinarity, ed. Robert Frodeman, xxix–xxxix. Oxford: Oxford University Press. Frodeman, Robert, Julie Thompson Klein, and Carli Mitcham. 2010. Preface. In The Oxford Handbook of Interdisciplinarity, ed. Robert Frodeman, vii–ix. Oxford: Oxford University Press. Gibbons, Michael, ed. 1994. The New Production of Knowledge: The Dynamics of Science and Research in Contemporary Societies. London: Sage. Hadorn, Gertrude Hirsch, Christopher Pohl, and Gabriele Bammer. 2010. Solving Problems Through Transdisciplinary Research. In The Oxford Handbook of Interdisciplinarity, ed. Robert Frodeman, 431–433. Oxford: Oxford University Press. Hawkins, Anne Hunsaker. 1999a. Pathography: Patient Narratives of Illness. Western Journal of Medicine 171 (2): 127–129. ———. 1999b. Reconstructing Illness: Studies in Pathology. Purdue: Purdue University Press. Hayes, Chris. 2018. How AI Increases Art World Accessibility for Disabled Artists. Dazed, Sept. 2018. https://tinyurl.com/yxw3lg6n Huutoniemi, Katri, Julie Thompson Klein, Henrik Bruun, and Janne Hukkinen. 2010. Analyzing Interdisciplinarity: Typology and Indicators. Research Policy 39: 79–88. https://doi.org/10.1016/j.respol.2009.09.011. Jones, Therese, Delese Wear, and Lester D.  Friedman, eds. 2014. Health Humanities Reader. New Brunswick and London: Rutgers University Press. Kafer, Alison. 2013. Feminist, Queer. Crip: Indiana University Press. Kaye, H. Stephen, Patricia Yeager, and Myisha Reed. 2008. Disparities in Usage of Assistive Technology Among People with Disabilities. Assistive Technology 20 (4): 194–203.

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———. 2020. Writing Grief: The Fraught Work of Mourning in Fiction. In Exploring Grief: Towards a Sociology of Sorrow, ed. Michael Hviid Jacobsen and Anders Petersen, 104–123. Routledge. Riegel, Christian, and Katherine M.  Robinson. 2020. Disability, Ableism, Eye Tracking, and Art Creation and Disruption. In Radical Immersions: Navigating Between Virtual/ Physical Environments and Information Bubbles, ed. Elena Papadaki, 138–145. London: DRHA. Riegel, Christian, Katherine M. Robinson, and Ashley Herman. 2017. Harnessing Quantitative Eye Tracking Data to Create Art: Interdisciplinary Collaboration and Data Visualization. Body, Space & Technology 16: 101. Rogers, L.J., and B. Blue Swadener, eds. 2001. Semiotics & Disability: Interrogating Categories of Difference. SUNY Press. Siedlok, Frank, and Paul Hibbert. 2014. The Organization of Interdisciplinary Research: Modes, Drivers and Barriers: Organization of Interdisciplinary Research. International Journal of Management Reviews 16 (2): 194–210. https://doi.org/10.1111/ijmr.12016. Snyder, S.L., and D. Mitchell. 2006. Cultural Locations of Disability. University of Chicago Press, Chicago, IL. Soong, Ronald, Kyle Agmata, Tina Doyle, Amy Jenne, Tony Adamo, and Andre Simpson. 2018. Combining the Maker Movement with Accessibility Needs in an Undergraduate Laboratory: A Cost-Effective Text-to-Speech Multipurpose, Universal Chemistry Sensor Hub (MUCSH) for Students with Disabilities. Journal of Chemical Education 95 (12): 2268–2272. https://doi. org/10.1021/acs.jchemed.8b00638. Thomas, C. 2004. Rescuing a Social Relational Understanding of Disability. Scandinavian Journal of Disability Research 6 (1): 22–36. Trussell, Dawn E., Stephanie Paterson, Shannon Hebblethwaite, Trisha M.K. Xing, and Meredith Evans. 2017. Negotiating the Complexities and Risks of Interdisciplinary Qualitative Research. International Journal of Qualitative Research 16: 1–10. Uslan, M.M. 1992. Barriers to Acquiring Assistive Technology: Cost and Lack of Information. Journal of Visual Impairment & Blindness 86 (9): 402–407. https://doi.org/10.1177/0145482X9208600907. Ward-Sutton, C., N.F. Williams, C.L. Moore, and E.O. Manyibe. 2020. Assistive Technology Access and Usage Barriers Among African Americans with Disabilities: A Review of the Literature and Policy. Journal of Applied Rehabilitation Counseling 51 (2): 115–133. Christian Riegel  is Professor of Health Humanities and English at Campion College, University of Regina, Saskatchewan, Canada. He is a Fellow of the Royal Society for the Arts (FRSA) in the United Kingdom. Amongst his books are

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Writing Grief: Margaret Laurence and the Work of Mourning, Response to Death: The Literary Work of Mourning, and Twenty-First Century Canadian Writers. He is coordinator of the Certificate programme in Health and Medical Humanities at the University of Regina.  Katherine M.  Robinson is Professor of Psychology at Campion College, University of Regina, Saskatchewan, Canada. She is a Fellow of the Royal Society for the Arts (FRSA) in the United Kingdom. She specializes in mathematical cognition, the psychology of evil, and eye tracker computer game design for data collection. She recently published Mathematical Learning and Cognition in Early Childhood Education: Integrating Interdisciplinary Research into Practice.

Open Access  This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made. The images or other third party material in this chapter are included in the chapter’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

CHAPTER 9

Listen, Play, Learn: Rethinking Expertise and Collaboration in the Field of Disability Support Services Myles Himmelreich and Michelle Stewart

Introduction This chapter examines the development of an improvisation toolkit, called ImprovEnabled (available at: improvenabled.ca), that was meant to be a resource to support individuals with complex disabilities, such as Foetal Alcohol Spectrum Disorder (FASD), using facilitated improvisation games. These low-barrier games were meant to create a space for creative exploration and expression by all participants, including agency workers and “clients.” Using improvisation, as a method, put all participants in play together to create spaces for collaboration and connection. This M. Himmelreich Bigstone Cree Nation, Regina, SK, Canada e-mail: [email protected] M. Stewart (*) Department of Gender, Religion and Critical Studies, University of Regina, Regina, SK, Canada e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_9

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chapter is about unexpected pedagogical practices within and between researchers, experts, and collaborators. We say unexpected because this chapter is about a project that started off with one intention—to use community-based arts and improvisation as a method to better understand a complex disability—but was later transformed when the very intention and practice was called into question. The transformation came in the form of a disruption. The result was a different iteration of the project and a rich pedagogical space. The authors will discuss the project, and the new languages of collaboration and accountability that emerged, as an example of a health humanities project anchored in the tenets of disability justice. We hope this chapter will be of interest to a wide range of readers, including those with FASD and other complex disabilities, as well as researchers and artists in the field. We also hope it will be an interesting read for agencies that work with individuals with complex disabilities. Most importantly, we hope this chapter helps to push the field to think and rethink the terms of collaboration. The aim is to have a chapter that is accessible to non-academic audiences while also contributing to academic research and practices. The development of the toolkit happened simultaneously to heighten awareness around the complexities and role of social isolation for individuals with FASD (Thanh and Jonsson 2016). The broader project was started in 2015–2016 and was understood to be community-driven (Montoya and Kent 2011) in that it was instigated following discussions with caregivers. That said, the project was not developed by and with individuals that had the disability. Rather, the project was developed for individuals with the disability. For the reader that just popped an eyebrow, this framing will be unpacked and problematized as we will outline how an arts-based project developed by researchers and community artists who wanted to address social determinants of health outcomes of a particular disability reproduced some of the very social hierarchies they sought to dismantle. This chapter will place an emphasis on the intervention and reconfiguration of the project that helped inform a series of workshops by not for individuals with FASD. In this process of reconfiguration, a new workshop series emerged that used improvisation to help youth to better understand their disability—and for campus and community collaborations to be re-imagined. This original project, called ImprovEnabled, incorporated short-form improvisation games in a toolkit that could assist workers in community-­ based organizations that support individuals with disabilities. The toolkit was offered as a mechanism to connect with their “clients” to increase social inclusion and counter the adverse impacts of social isolation for

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adults that have Foetal Alcohol Spectrum Disorder (FASD). Improvisation has a robust history in music, art, community-based arts, and other settings (Caines and Heble 2014). Improvisation has also been understood to be a resource that can be used in workplace training (Jackson 1995), with clear application in corporate spaces, where “playing” together (Rajeev and Kalpathi 2016) is but one of many strategies to increase productivity or management prowess. Drawing on the arts is not unique, and the health sector has turned to community-based arts practices to improve health outcomes (Young et al. 2016) and looked to the capacity of improvisation, which can improve a wide range of outcomes, including social acceptance (Morse et  al. 2018). Interdisciplinary collisions between the worlds of health practitioners and artists can give rise to tensions between “health perspectives” and “arts perspectives” (Putland 2008) as well as an opportunity to think collaboratively. The project brought together the methods of social sciences, humanities, and community-based arts to generate a health intervention that sought to address a significant social justice and health equity issue with a new method: could improvisation (as a method) be used to better understand the experiences of individuals with FASD who were vulnerable to the adverse impacts of stigma and social isolation? Rebecca Caines co-­ designed the project by drawing on her expertise in the field of improvisation and community-based arts (Caines and Heble 2014) and Michelle Stewart drew on her FASD background (Stewart 2015). The project was also informed by research on the impact of social stigma and isolation on individuals and families (Malbin 2004; Rowbottom et al. 2010; Salmon 2011). Research indicated that individuals with FASD had an average life expectancy of 34 years old, with the leading cause of death to be suicide and accident (Thanh and Jonsson 2016), creating panic for those who have FASD, and for researchers and professionals it drove urgency into their work. ImprovEnabled leveraged improvisation as a methodology by which families and workers could better connect with individuals that had FASD (Stewart et al. 2020). While the project was seeded and nourished through discussions with caregivers, and was piloted with individuals that have FASD, it was not created collaboratively with those with FASD. Despite its vision of collaboration, it was imagined to be for people with FASD and delivered by those who did not have FASD. In different iterations this might have been in parent support groups and other spaces, including, but not limited to, the support group settings held for people with FASD in local nonprofit agencies.

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One question to disrupt the project: was this toolkit created for people with FASD to deliver (the workshop) or was it created for people with FASD to receive? The answer made visible an oversight on the part of the original team: the toolkit held the individual with FASD in a static space, as forever a “client” and never a facilitator. If the toolkit aspired to bring about change, individuals with FASD were not framed as facilitating that change. Rather than retreat to a fragile space that defends an action versus learning and adapting, the researchers and artists involved re-imagined the work. Organizations around the world were accessing the toolkit and finding the toolkit to be useful in a wide range of practices. But there was an opportunity to pivot. Subsequent funding to seed a community project was acquired, a structure for programme delivery and evaluation was created, and a new iteration emerged. The foundation of improvisation is not predicated on one leader but rather demands everyone to contribute. In that sense, improvisation is necessarily responsive as a method and a modality. We needed to respond and adapt, so a new collaboration emerged. The re-imagined collaboration was grounded in a shared commitment to paradigm-shifting work. To shift paradigms, we must first start with our own foundation—pulling it apart brick by brick—to rebuild something new that we, ourselves, cannot model in our own social relationships. This chapter tells the story of a new iteration of the project that was also rebuilding the foundation of the project and our collaborations in the field.

A Brief Word on Audience and Style To tell this story equitably, we do so through a collaborative interview. This method involves a short set of questions meant to instigate a dialogue between both parties. The conversation was recorded, and the chapter was built from the original transcript of the collaborative interview. The interview does not include a set of predetermined questions and both parties agree to be interviewed and have the content used in the text of the chapter. Accordingly, this chapter will move between narrative taken from the collaborative interview and an analysis of the narrative. As each author comes to the text with different strengths and training, this practice allows for both parties to shape the chapter to share this project and diverse perspectives. This style sits with other projects that are committed to equitable practices that are anti-colonial and anti-racist but can often run into barriers within traditional publishing practices (Liboiron et  al. 2017;

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Stewart et al. 2020) that make projects inaccessible. We also want to start by “situating” each author in the text to show how they relate to the story being told. Myles identifies as someone with FASD. Myles, as someone with FASD, defines FASD as a lifelong disability that can occur when there is alcohol consumption during pregnancy. It is known as a whole-body diagnosis that can not only impact brain development but also lead to physical health issues. An individual with FASD may experience developmental delays as well as slower processing speed. Michelle identifies as having a neurodevelopmental disability but does not have FASD. Given this background, both authors could be understood to be neurodivergent. Michelle, as someone that identifies as being neurodivergent, defines neurodivergence to mean there is variation in how our brains work, how we process and engage in the world, and the ideas therein. It can also mean that we spend a lot of time needing to adapt to the world around us. With that in mind, we are attempting to write to a similarly diverse audience which requires attention to the writing style to help make the text and ideas accessible. For example, we might take a moment to unpack an idea or try to define terms just as we have just done with the concept of “situated,” FASD, and neurodivergence.

Background This section discusses ideas from two different fields—health humanities and disability justice—to lay out elements from each field in relationship to the project. The field of health humanities is distinct from medical humanities. The field of medical humanities is focused on making better doctors and forming medical student “sensibilities” through practices that bring the humanities to bear on the professional training of medical professionals (Bleakley 2015). Health humanities is not focused on infusing medical professionalism through humanities training (Klugman and Lamb 2019; Crawford 2020). Rather, health humanities “puts the humanities, arts, and social sciences in the center, rather than as an add-on to clinical and basic science” (Klugman and Lamb 2019, 3). Crawford echoes that health humanities are not pre-occupied with training medical professionals, and instead challenges mechanistic or reductive routes to “injecting” the arts and humanities as a kind of treatment. Importantly, it has fractured the expert to non-expert dynamic, revealing fault lines in the project of professional

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“injectables,” treatments, or interventions over grassroots self- and community help and more open access to the benefits of social and cultural assets, that is, creative public health. (Crawford 2020, 3)

Through shattering the expert/non-expert binary, the health humanities join other fields, including medical anthropology, that place the “patient” or individual at the centre of an inquiry such that lived experience is understood to occupy a space of expertise and wisdom (Panter-­ Brick and Eggerman 2018). As Charise (2017) notes, the field of health humanities is radically interdisciplinary and that “health is not a single-­ sector issue, and its problems will not be addressed with single-sector solutions” (438). Crawford elaborates that these interdisciplinary projects are often applied and include co-design as a part of the collaboration (Crawford 2020). Seen this way, health humanities place the individual and wellness at the centre through interdisciplinary and intersectional approaches that reconfigure expertise and experience. Early interventions in the field expanded conceptual understandings of the patient’s experiences (Frank 1990) and moved beyond the understanding of illness in which patients are victims of illness. Frank (1990), drawing on his own story and others, offers a retelling of the medical experience as a tale or narrative reclamation that counters the illness story that begins with wreckage narrative—of life interrupted, disrupted, and rendered chaotic. This narrative is then reclaimed through self-story. The notion of self-story—of telling one’s own story can align in many ways within the disability justice framework. Disability justice is a framework which means it is meant to be a way to think about a particular topic and to inform how we work or organize together. The Sins Invalid collective outlines ten key principles of disability justice (Berne et  al. 2018).1 Disability justice starts with Audre Lorde and the concept of “intersectionality.” Lorde (1982) notes, “There is no such thing as a single-issue struggle because we do not live single-issue lives” (n.p.). This intersectional approach aligns with Charise’s comment that health is not a single issue and therefore requires interdisciplinary approaches. Intersectionality focuses on the various issues in the struggle or the various challenges that people might face by thinking about how these issues can intersect in key areas, for example race, class, gender expression, and sexuality. Disability justice is meant to be intersectional, inclusive, strengths-based, unapologetic, and political, and therefore rejects ableism and the paternalism that can surround disability and disability movements.

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As A.J. Withers (2012) puts more bluntly, “Disabled people are not problems; we are diverse and offer important understandings of the world that should be celebrated rather than marginalized.” Formed through collaboration and commitment to collective liberation, disability justice is a more recent approach in disability activism (Sins Invalid 2009; Eiler and D’Angelo 2020). Disability justice rejects a rights-­ based framework and demands more than tolerance or acceptance by society at large. It is meant to be paradigm shifting. According to Sins Invalid (2009), disability justice demands “leadership from the most impacted” (n.p.). If we challenge Frank’s wreckage narrative (if we replace illness and insert disability), the disability justice framework starts with, and stays focused on, self-story and places the individual at the centre of the experience. While we cannot ignore the role of medical interventions during illness and through the life course when one has a disability, we can collectively decide that the medical narrative (or medical model of disability) is not centred and instead focus on the lived experience of the individual. Doing so places the individual—and their lived experience—at the centre. How this could play out in the shaping of programmes, practices, and interventions will be the topic of discussion later in the chapter. Collective liberation is a central goal, and therefore how we work together, as well as our collective agreement about challenging who is an expert, is key. FASD can be placed within broader discussions in the fields of disability justice and the health humanities. FASD is a permanent and often referred to as an “invisible disability” in that there are limited physical characteristics associated with the disability (Malbin 2004; Winsor 2020). There is much debate as it relates to the overall prevalence of FASD in the general population as older studies looked at specific geographic locations or subpopulations (Jonsson 2019). It is often indicated that 1–5% of the general population is impacted (May et al. 2009; Stade et al. 2009). The stigma and marginalization associated with FASD is marked by misunderstanding, ableism, shame, and blame that surrounds the birthing parent (Bell et al. 2015) as well as systemic racism (Oldani 2009; Stewart 2016; Salmon 2011; Williams 2018). Shame and blame focuses on the perceived deficiencies of the birthing parent that consumed alcohol during pregnancy. Racism can be traced back to flawed beliefs that FASD exists only or primarily in Indigenous families and/or communities. The former ignores the statistical reality that most individuals do not know they are pregnant in the opening weeks of their pregnancy and that over 50% of pregnancies

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are unplanned. The latter ignores the impacts of trauma and privileges an outdated and racist caricature of drunken Indians. Research in the field focuses on the challenges facing those with the disability, including research that discusses the struggle to access appropriate supports and services across the lifespan (Popova et al. 2011), which requires increased capacity for advocacy from parents/caregivers, family, workers, and individuals (Duquette et  al. 2012). The outcome of this uneven and inequitable access to supports and services, is that individuals with FASD have disproportionate contact with social services, child welfare, and justice sectors (Popova et  al. 2011; Streissguth et  al. 1996). Research in the field is often deficit-driven. What this means, in practice, is that outcomes in projects (including research findings and interventions) will have different impacts based on one’s social location relative to the disability. For example, a research project and journal article could focus on struggles and challenges associated with the disability and that would be a satisfactory outcome for a researcher. For individuals with the disability, an article that outlines struggles but does not offer strategies is frustrating and even short-sighted. Collaboration between researchers and those who are impacted by the research can help to address this gap through methodologies that look at challenges alongside strategies, as well as knowledge translation practices that are thinking about a diverse audience and their expectations.

Improvisation to Facilitate Change In this section Myles and Michelle will share their perspectives on the project and offer analysis of our discussion. The goal is to offer the project from two different perspectives. We start with Michelle, not because she is the researcher, but because the initial project was created by Michelle and the framing of the project is central to the story we want to explore with the reader: Michelle S: If I were asked at the time what the goal of the project was, I would have likely offered something that sounded like this: in designing the toolkit, the goal was to create a resource that could be used by frontline professionals who were working with clients that had FASD. If I was asked to think about the broader applications, I was often thinking about how improvisation could be a tool for training, including training justice workers and others who work in the human services sector. When working with police and other frontline agencies, there is often a preference for

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experiential learning or scenario-based training and improvisation fit well within that structure. So, in designing the toolkit I was thinking about challenging social isolation through a games-based activity between workers and clients; I was also thinking about the games as a resource that could be used to train police and others to better understand FASD. There are clear intersections with health humanities in this statement and the ways in which this type of interdisciplinary work can be used as a teaching tool. For example, health humanities is taken up in the field of health education and can help with “soft skills” development such as using health humanities to teach about the human condition as part of formal medical training. Health humanities, from a branding perspective, can have “draw” and “deterrent” because of its novelty, opportunity for creativity, as well as applicability (Costa et al. 2020). The development of the improv toolkit, the practice of taking it into different communities and training agency workers to use the kit align heavily with these themes. Michelle S: From my perspective, I was trying to think of unique ways to bring people together and to effectively train workers to use a method of engaging with someone else’s humanity—and their own. I was not a trained improvisation artist when I started and I would share this with the workers we were training to try and lower their resistance. In this way, I was making a lot of effort to connect and empathize with workers while trying to secure their interest in the project and to use the tool. Similarly to health humanities, as a discipline, we were trying to draw people in through the novelty of the project but were aware that there would be hesitancy because of the novelty. Myles was first introduced to the improvisation toolkit when it was being presented to agencies across Canada. Myles joined for a sample workshop that was held in an outdoor gazebo on a warm day which allowed space for more participants but also an audience of people walking through the park. The workshop was hosted by the researchers/artists and was focused on doing outreach for the project and to let agencies know about the free toolkit resource. Myles attended as he was working at a frontline agency at the time and was then also invited as a special guest for a session held through campus partnerships. Myles H: As I attended the different presentations to different groups and agencies over a period of a week I found myself stepping back more and trying to imagine how this toolkit would be of use and could make change for individuals with FASD. I could see the potential the toolkit offered as it was taught using improvisation. I say that as someone with

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over 15 years of experience working with individuals with FASD, and as an individual myself with this disability so I know how beneficial hands-on learning can be. I was attending this session because I believed in the importance of having individuals (with FASD) at the table as there’s more opportunities and direction available if the work and/or the research is being done with us. The toolkit and the flexibility for it to be modified later lead to great success [and] this would not, and could not, have happened if Michelle and those who created the toolkit did not invite me to the table. The broader impact that this had for a number of individuals could not have happened if while at the table I didn’t feel like my voice was being heard as we will talk about in this chapter. The phrase of “nothing about us without us” rings true and goes along with my belief of “don’t do the work for us, do the work with us.” Michelle S: Myles is being generous here. Myles raised concerns at the first demonstration. His comments in the session focused on the types of games that were being played and concerns that it could make individuals feel like they are being treated as children. Myles also noted that the blending of physical actions (theatre games) with digital interfaces (using iPads for improvised music) was challenging to transition at the pace expected. This would be the start of a much larger—and much needed—intervention. Myles H: It changed by being able to take the original concept and asking “could this toolkit be taught to and taught by an individual with FASD?” It brought forward the idea that has been missing in research, surveys, conferences and even “FASD support groups” for years. The idea of looking at our work in the field through the lens of an individual with FASD.

Nothing About Us Without Us In sitting down to discuss this chapter, both Myles and Michelle start by visiting the idea of “nothing about us without us,” which can be traced back to disability rights activists in South Africa and Eastern Europe in the early 1990s (Charlton 1998). Charlton notes that this rallying call is informed, in part, by second-wave feminists’ framework of rights to self-­ determination and awareness as encapsulated in Our Bodies, Ourselves (Norsigian 2011), which was first published in 1973. Charlton (1998) traces the slogan to the civil rights movement more broadly, making the

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claim that millions of people with disabilities are subject to collective human rights atrocity. He writes: For the first time in recorded human history politically active people with disabilities are beginning to proclaim that they know what is best for themselves and their community. This is a militant, revelational claim aptly capsulized in “Nothing About Us Without Us.” (Charlton 1998, 4) The militancy comes with breaking from and actively pushing back against the  paternalism that treats individuals with  disabilities as  children or as politically inactive subjects

The rallying call of “nothing about us without us” emerged in the late twentieth century. However, if we turn attention to the field of FASD, this call has been either unheard or ignored. In some ways placing research in the field of FASD outside the broader mandates and expectations of disability studies and critical disability studies. Accordingly, the collaborative interview starts with this state of the field by reframing the idea of participation in which impacted individuals are not seen as “clients” or “subjects” but as valued experts with whom there must be professional courtesy: Michelle S: The idea of “nothing about us without us” is not common in the field of FASD. And so even though that idea might have emerged in the 1980s or 1990s you are still actively advocating and fighting for that [mandate or rallying call] to be part of the discussion in 2021. Myles H: … and to be done in a way that is useful for the researchers and professionals, but as well as the individual. And how it’s been done in the past isn’t always necessarily the right way. So now we have to learn how to do it the right way. This means to not just have us listed in these projects so you can put that down in the research “we have an individual involved.” But what does that actually look like? And how am I being treated? If I’m coming into this, I should be coming into this as a professional on FASD. And so that’s why you’re bringing us [people with FASD] in and you are treating us like you’re treating the other researchers that come to consult on the newest findings. The range of clinical, theoretical, and applied research projects in the field of FASD is vast. Research can range from fish and animal modelling projects (Fernandes et  al. 2018; Petrelli et  al. 2018) that focus on the impacts of alcohol on development to medication algorithms to deal with

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sleep disruption (Mela et al. 2020; Ritfeld et al. 2021) to the role of early diagnosis in securing appropriate supports for children and youth (Kambeitz et al. 2019; Hanlon-Dearman 2021), and to life course theory to better understanding the disability and support individuals across the lifespan (Badry and Wight Felske 2011). Moreover, there are dedicated conferences that take place focused on the disability. In other words, the research field is wide and the range of areas for input is broad. There are many spaces in which to invite individuals with lived experience and ethical reasons to do so as outlined above. While there is research focusing on strengths-based approaches to FASD (Flannigan et al. 2018), and research that does involve individuals with FASD which has expanded knowledge and driven our collective understanding of FASD as whole body disorder (Himmelreich et al. 2020), that footprint is small relative to the field of research at large. So, the challenge comes in the form of uptake and pragmatic considerations around robust collaboration. One way to rethink this conundrum is to think about what it means to call someone an expert and what it means to engage, then, in professional courtesy. Michelle S: Do you think, when you say, “how am I being treated?” and “I should be treated as a professional,” do you think everyone that has, in this case if we’re thinking about a person with FASD, everyone who has FASD is a professional—an expert of the condition because they have the condition? Myles H: So that’s where there’s been a bit of a tricky line and we saw this happening over the years when people would say, “oh, you have FASD, you should be up on the stage talking because look at these other individuals, and look at the impact they’re having.” As an individual, you have that feeling of “oh my gosh, people are paying attention to me in this positive way. This is amazing.” Even though these same individuals are not necessarily ready to talk about the trauma they’ve been through. But there are 200 people in the audience and so you think to yourself “it’s great when I talk about it, so I’ll do it for them.” And not everybody is ready and capable or should even want to be a part of the research and projects. But when people are ready, they should be supported, and should be respected in the same way, as a professional in the field. When thinking about those that want to be involved in the research and the question of what support will look like, Myles notes that there are many built-in supports that are created for experts and that if we think about participation as a form of expert engagement that there are professional courtesies to be considered.

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Myles H: When it comes to the support part, it’s set up for the researcher. For example, the researcher is picked up and taken for breakfast and taken to the University and shown around … if you’re really trying to learn how to work, and support and get more information from an individual with FASD, there are some things that we may need. For example, we may need somebody to have a schedule printed out for us and to have a go-to person who can focus on the structure and routine and then implement it so that I can come and give you the work that I know I am capable of when I am supported. Because if I don’t have someone to pick me up, or if I don’t have someone to make sure that I’m eating during the trip, then I’ll either not eat or, you know, I’ll just try to make it by. But I think it’s important to understand if you are going to collaborate with an individual, what are some things that they’re going to need. Because everybody that has FASD needs some type of support—more or less. And so that’s where I think it gets a little tricky. It can be noted here that Myles and Michelle held this conversation during a project trip that focused on a number of collaborations they were working on. It was the end of the second full-day of meetings. Myles’s examples are not abstract or tangential: they included accommodations that were made, and some that were overlooked, in the planning and execution of this trip. Michelle S: Reflecting on our interview, I am struck now at the request: a go-to person. This is critical and even though I often have a research assistant or associate that I imagine to be in that role, they really aren’t and so then certain things are overlooked or not done in the most helpful way. For example, transportation was an issue this time as was getting the schedule together in advance. Marking these now as critical, I can move forward with that understanding that it is part of professional courtesy. The default position for researchers can be to retreat or defend their perspectives or actions. For example, the request that was made by a group of individuals with FASD to see research questions in advance was rejected by researchers. For researchers the response might land somewhere in the area of not being able to distribute for fear it could over-determine outcomes. However, from the perspective of inclusivity, and working collaboratively, distributing the questions in advance is more equitable because we all have different processing speeds. For individuals with FASD, processing can be deeply impacted by their lived experience of having the disability. What does this mean in practice? Asking a question and expecting an immediate response might only afford a marginal response. If

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researchers are looking for robust answers to questions, then having the questions distributed in advance, so that the individual can think about the question and process at their own speed, means that the question is formally asked, there could be a robust answer available. This is but one example to think about. The point is to take a step back or tilt one’s head and think differently about research—design, method, analysis, and dissemination. That shift in perspective comes more easily as we expand our understanding, and practice, of collaboration. Michelle S: Probably six or eight months later [after the demonstrations] you were like, “we could use this for peer mentoring.” But the problem is we created the workshop in such a way that the imagined person hosting the session never had FASD because the tool kit was too complicated. It didn’t make any sense. And the thing I thought was really interesting was the process you and I went through where you would say, “okay, it needs like a lesson plan.” And so then I would sit down and create some elaborate “lesson plan” and then you would sit down with Krystal [research associate and evaluator] and Kat [co-facilitator who also has FASD] and strip it down, right, to its bare pieces. And, and then I think what really emerged at that point was your pedagogy [in the project], pedagogy is like how you teach, right? And so your pedagogy, your teaching style, is: a description, a visual, and then a way to, like, experience it, right? So, improv can be a way to experience “it.” The re-imagined project required rethinking from the ground up. Rather than thinking about the toolkit—the intervention designed by researchers and community artists who had worked in partnership with community agencies and family members—this was about going back to the original concept: could improvisation be a method to help hold space to do critical work? Having seen the toolkit used in a number of settings, Myles believed it could be but not in its current configuration. Rather than thinking about this as a toolkit for agencies to provide supports to individuals, Myles saw this as a method for education and self-advocacy. Myles H: By taking the toolkit and using it to inform and educate individuals about their own diagnosis provided more of a positive impact than we originally thought. We modified the process of “teaching” the toolkit until it was broken down and simplified. This process would involve weekly meetings in which the team that Myles was working with in one location (on the west coast of Canada) would meet and decide the coming week’s plans for the youth support group. Michelle would then work with her team a couple provinces over

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and develop an evidence-based “lesson plan” that would outline a particular strategy or approach to teach the chosen topic. That lesson plan would then be sent to the west coast team, some chuckles would take place, and then the west coast team would come up with the final plan that pulled some ideas from the lesson plan and blended with Myles’s pedagogy and ideas from the other team members. Myles explains this with an example below. Myles H: Okay, we would start with everything that Michelle’s wrote, and that seemed like a lot. We would wonder “how do we get this into the group” but then we would go from that initial idea that we have in our heads and we would start to rework it so we could think about “now how would you explain this?” So one of the examples is that we would be talking about processing speed. What we did was we started in the room with a group and said, “Okay, so this is what processing speed is: processing speed is being able to take the information and put it in your head. Then the next step is making sense of it, and the third step would be storing that information for later on. And then fourth step is where you’re going to deliver the information whether that be verbally, on a test, writing it down, or whatever. So being able to take that information to the different parts of your brain and deliver it.” So we would say that to the participants in the group and then we would draw an image of the brain with the numbers 1, 2, 3, 4 and a line connecting them and then what we would do is then dry-erase the number 3 and maybe move it over a little farther from the other numbers. And so now it shows that what started out looking like a basic 1, 2, 3, 4—almost a box is now transformed into a different shape. Now we’re saying, “So if three is over here, now the brain works differently. So now it takes me longer to find three and how do I come up with the same message at the same time as everybody else?” So the individuals in the group kind of connect to that idea. So we would do the speaking part and then we would do the visual part. Then we would take them outside. And we tell them that the activity is going to be about processing speed. We start with cups filled with water, and we say, “Okay, you have to walk from this side of the building to that side of the building and back.” And so the first person went, and then came back, and it was fairly basic point A to point B, no problem. Second person went in and I told them “so now when you go, you have to go around that post then walk to the end and then back again.” So they did. Then the third person was told “Ok, you have to go around that post, go the end, when you come back around the post again, and then come back to the beginning.” So they

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did—no problem. On the fourth person we said “you have to cut through those bushes over there, you have to step over that box of dirt where the plants are, then you have to go around the pillar. And then you will go to the wall, go back around all of those things again, and then come back.” So that person did theirs and when they got back, of course, they’ve spilt some of the water from the cup. And, of course, it took them longer. So then we asked the first person, “for you, was it pretty difficult?” They replied, “no, it was fairly easy.” We asked the second person, “so why did you take a little bit longer?” and they would reply “Oh, because I had to go around the pole.” Then we would say “Ok” and move onto the third person, “why did you lose some of yours or why did it take you longer?” and they would reply “Oh, I had to do more work than the other person.” And then we would get to the fourth person and I would ask why they spilled the water and remark “Oh, if you only tried harder, you’d able to do this.” And the interesting thing was, the other participants got on me and said, “That’s not fair! That’s not fair that you expect them to do all other this stuff.” And one of them was like “Yeah! It’s like that processing, where you have to remember more things.” And that was great. So it was awesome to see them try to be like, “That’s not fair.” This was the goal for workshop hosts from the start: to help youth better understand their diagnosis as means to better understand and advocate for themselves. To go from learning about processing speed to then intervening and advocating in the game by outlining what processing speed is and the need for equity in participation to account for different processing speeds. This meant that the pedagogical approach that blended improvisation and games-based learning was an effective tool to help educate youth to become their own advocates.

Conclusion The chapter started with a discussion about how the project fits into bigger discussions taking place in the fields of the health humanities as well as disability justice. The background section, reflecting on the aims of disability justice, also offered background on the authors and explained their relationship to health humanities, disability, and FASD. This act is often called “situating” the author and the aim is to help the audience understand how the context of the author contributes to the story that is being told. The authors identified as neurodivergent and with a goal to make a chapter that was as accessible as possible to a wider audience. And while the health humanities section of the text might not have been as accessible

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to individuals who are not working in these fields, it is meant to share some ideas from the field that are relevant to the chapter. Similarly, for those working in health humanities but with limited understanding of disability justice, the goal was to make some information about this framework accessible. ImprovEnabled is an open-access project with the improvisation toolkit available online at no cost. It is being used in locations around the world and likely in each location new iterations have emerged. The focus of this chapter was about the foundation of the project and the disruptive question: was this toolkit created for people with FASD to deliver (the workshop) or was it created for people with FASD to receive? The answer to this question transformed the project and a new iteration emerged. The main body of the chapter was like a conversation with long quotes taken from the collaborative interview. A short analysis of the excerpts from the conversation was carried out. The goal was for this section to be as accessible as possible, which includes researchers and those with FASD. If we are seeking for projects to be accessible, so too must the practices of dissemination. This chapter style is an experiment in collaboration and dissemination, the intent of which was to broaden our collective understanding of audience and writing styles in the interest of more equitable access to ideas in the field. Returning to the project, the youth advocacy project ran for approximately one year. It was a workshop series held in the evening for youth with a diagnosis of FASD. The workshop leaders were two adults who had FASD and who used the improvisation toolkit as a stepping-off point to think about how to incorporate improvisation and games-based learning into their workshop style. Each week, youth would come together with others that shared the disability and would learn together. Each week improvisation would move around in the background, each week the original games and ideas would be modified. During the course of the year, a formative evaluation was taking place to see how the project evolved and its overall impact. During one phase of the evaluation, the researcher/artists that designed the original toolkit came to visit and used the methods of improvisation to learn with the youth and assess what lessons resonated over the course of the semester. Myles outlines one of the practices during the evaluation session: Myles H: We said, “Okay, guys, tell us—on the sticky notes, right— something that you remember about the group: it could be a picture, it

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could be a word, it could be whatever.” We ended up filling up the hallway floor, into the group room, all the walls, all filled with different things they remembered. And, you know, I really believe that was because of the way that we went about doing these things, right. As Myles outlines, the evaluation trip produced an elaborate list of memories and ideas. Post-it notes were scribbled on, with drawings and phrases that filled the small pages, and soon there emerged so many notes that they filled the hallway (see Fig. 9.1) and the walls (see Fig. 9.2) with the themes of advocacy and support emerging in the discussion (see Fig. 9.3). The small games, and tiny moments stuck to the participants as

Fig. 9.1  Myles walking through the post-it notes that captured the feedback from the youth who had participated in the improvision series. Credit: Michelle Stewart

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Fig. 9.2  Themes that emerged during the arts-based evaluation with the youth included the role of advocacy as they learned more about their disability they were better able to advocate for themselves. Credit: Michelle Stewart

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Fig. 9.3  The swirl of words around “advocacy” also traces out the ways in which self-awareness and advocacy are linked, for participants, to acceptance, hope and loving oneself. Credit: Michelle Stewart

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Fig. 9.4  Images of cups of water were references to the water activity that had different expectations and tasks for different groups of individuals and participants recalled that the individuals with an “empty cup” can face blame and punishment. Credit: Michelle Stewart

a post-it note with a half-filled glass of water served as a memory for one individual about the game of spilled water (see Fig. 9.4), which is a game about processing speed but also a game about equity and in practice became a game that resulted in advocacy. The workshop series helped youth to connect with young adults who could help to explain the elements of their disability through language, activities, and games. Listen, play, and learn. These workshop activities were meant to give the youth critical tools they would need to advocate for themselves. The knowledge captured in the workshop was captured in post-it notes that demonstrated recalled knowledge, including pictures of half-filled glasses and words that read “now I change my own lights,” which alludes to youth finding out about how their sensory profile can be deeply impacted by such things as lighting or sounds. To change one’s own lights is to recognize a sensory input is overwhelming and to “change the lights” (e.g. to turn them off or turn them down) is to take action to adjust the environment to better support oneself. Critical acts of self-awareness and advocacy that can help make home and school that much more bearable. As the pictures below

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illustrate, the youth had many memories to share which created a post-it note road that everyone was able to walk together. As the evaluators walked the path, individuals would decode pictures, words, or phrases. What emerged was the clear impact of the project. A project not imagined when the improvisation toolkit was released but rather a project only possible through rich collaboration which sparked further collaborations and opportunities to bring improv to different audiences. Michelle S: It really is a mix of your creative instinct on how to adapt the activity at the time. But then a mixture of also tapping into them embodying what they’re doing, right? So physically doing these activities with you, and sometimes doing artistic practice with you. But I’ve seen you use a similar strategy in a ballroom at an international conference where you made probably the fanciest doctor in the room be the so-called fourth participant, right? And so this was someone who presented as a white, upper-class, “gentlemen”—very well dressed, very privileged. But then, as the person with the most amount of obstacles given to him, when he spilled his water, you said all the same things to him, like, “why didn’t you try harder? ”Why didn’t you do this? And why didn’t you do that?” And the audience, of course, laughed. It was funny, for a number of reasons. It was funny in part, I think, because you were saying, you know, as Myles Himmelreich, to a very established researcher in the field, right, “couldn’t you just try harder?” This thing that’s always said to so many individuals with the disability. Even if we all agreed that we are all very different or divergent, and that no one is really neurotypical, it’s funny to think about what it means to do that—to say that—in this room at an academic conference. It was a room that was mostly made up of families and individuals that have FASD and who hear this said very often “just try harder.” But to have someone with FASD tell that to the researcher, he just needed to try harder. It sent another message. In the space of the international conference where the team shared information about the youth mentoring workshop, there was an opportunity to talk to the audience and do a PowerPoint, or there was an opportunity to share the workshop and a broader message. By sharing the game, and delivering it in the same way, there was an additional lesson delivered to the audience of individuals that did not have FASD: stop telling us to try harder. The eruption of laughter in the audience as Myles demanded the researcher to try harder, and the response from the researcher also

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laughing at himself, demonstrated a shift, or willingness, to come in—to listen, learn, and play together. Acknowledgements  This project, and every version of it, is the result of the insights and perspectives of many people. The authors would like to thank the following individuals and agencies for their involvement and contributions to the project. While not an exhaustive list, we hope it captures the range of individual involved and their impacts. Thanks to Jan Lutke for early inspiration as well as Dorothy Reid and Ray Marnoch and the entire Family Advisory Committee with Canada FASD Research Network for direction and insights. Thanks to Rebecca Caines for the capacity to bring improvisation into the field and to continue to seek new ways to work and collaborate together. Thanks to Dustin Brass, Johanna Bundon, Erin Goodpipe, Katrina Griffin, Rick Kotowich, Jayden Pfeifer, and Tom Scholte for facilitating workshops and offering reflection and insights during different iterations of this project. Thanks also to our range of community partners who contributed in many ways to this project, which includes, but is not limited to, the FASD Network of Saskatchewan, Fetal Alcohol Syndrome Society Yukon, Options for Independence, and the Asante Centre for hosting and participating in workshops. Thanks also to the coordinators and students that assisted with facilitating workshops, research, and evaluation along the way, including Michelle Apps, Mia Bell, Krystal Glowatski, Alexandra Johnson, and Holly Shunamon. Thank-you to all the participants who took part in early versions of the workshop as well as different iterations—your insight continues to inform how we do this work moving forward. Thanks to Robyn Pitawanakwat and Chris Kortright for insight on the project and chapter. Thanks also to the editors, Katherine Robinson and Christian Reigel, for their dedication to this volume and critical insights on the drafts of our chapter. This project was also made possible through financial and/ or structural support from the University of Regina, Saskatchewan, Canada, the International Institute for Critical Studies in Improvisation, Canada FASD Research Network, Regina Improvisation Studies Centre, Social Sciences and Humanities Research Council, and Canada Council for the Arts.

Note 1. The following are the principles of disability justice: (1) intersectionality; (2) leadership of those most impacted; (3) anti-capitalism; (4) cross-movement solidarity; (5) wholeness; (6) sustainability; (7) cross-disability solidarity; (8) interdependence; (9) collective access; (10) collective liberation. These principles, with explanation, can be explored further by visiting sinsinvalid.org.

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References Badry, Dorothy, and A.  Wight Felske. 2011. Policy Development in FASD for Individuals and Families Across the Lifespan. In Fetal Alcohol Spectrum Disorder: Management of Policy Perspectives and FASD, ed. Edward P.  Riley, Sterling Clarren, Joanne Weinberg, and Egon Jonsson. Edmonton, AB: Institute of Health Economics. Bell, Emily, Gail Andrew, Nina Di Pietro, Albert E. Chudley, James N. Reynolds, and Eric Racine. 2015. It’s a Shame! Stigma Against Fetal Alcohol Spectrum Disorder: Examining the Ethical Implications for Public Health Practices and Policies. Public Health Ethics 9: 65–77. https://doi.org/10.1093/ phe/phv012. Berne, Patricia, Aurora Levins Morales, David Langstaff, and Sins Invalid. 2018. Ten Principles of Disability Justice. WSQ: Women’s Studies Quarterly 46: 227–230. Bleakley, A. 2015. Medical humanities and medical education: How the medical humanities can shape better doctors. Routledge. Caines, Rebecca, and Ajay Heble. 2014. The Improvisation Studies Reader: Spontaneous Acts. New York: Routledge. Charise, Andrea. 2017. Site, Sector, Scope: Mapping the Epistemological Landscape of Health Humanities. Journal of Medical Humanities 38 (4): 431–444. Charlton, James I. 1998. Nothing About Us Without Us. Berkeley: University of California Press. Costa, Marcela, Emilia Kangasjarvi, and Andrea Charise. 2020. Beyond Empathy: A Qualitative Exploration of Arts and Humanities in Pre-professional (Baccalaureate) Health Education. Advances in Health Sciences Education 25: 1203–1226. Crawford, Paul. 2020. Introduction: Global Health Humanities and the Rise of Creative Public Health. In The Routledge Companion to Health Humanities, ed. Paul Crawford, Brian J. Brown, and Andrea Charise. London: Routledge. Duquette, C.A., Stodel, E.J., Fullarton, S., and Hagglund, K. 2012. Educational advocacy among adoptive parents of adolescents with fetal alcohol spectrum disorder. International Journal of Inclusive Education 16 (11): 1203–1221. Eiler, Elijah C., and Karen D’Angelo. 2020. Tensions and Connections Between Social Work and Anti-capitalist Disability Activism: Disability Rights, Disability Justice, and Implications for Practice. Journal of Community Practice 28: 356–372. https://doi.org/10.1080/10705422.2020.1842278. Fernandes, Yohaan, Desire M.  Buckley, and Johann K.  Eberhart. 2018. Diving into the World of Alcohol Teratogenesis: A Review of Zebrafish Models of Fetal Alcohol Spectrum Disorder. Biochemistry and Cell Biology 96: 88–97. https:// doi.org/10.1139/bcb-­2017-­0122.

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Flannigan, Katherine, Kelly Harding, Dorothy Reid, and Family Advisory Committee. 2018. Strengths among individuals with FASD.  Canada FASD Research Network. https://canfasd.ca/wp-­content/uploads/publications/ Strengths-­Among-­Individuals-­with-­FASD.pdf. Accessed 21 January 2022/ Frank, A.W. 1990. Bringing bodies back in: A decade review. Theory, Culture & Society 7 (1): 131–162. Hanlon-Dearman, A.C. 2021. How FASD Presents Across the Lifespan. In Prevention, Recognition and Management of Fetal Alcohol Spectrum Disorders, ed. Raja A.S. Mukherjee and Neil Aiton, 85–102. Cham: Springer. Himmelreich, Myles, C.J. Lutke, and Emily Travis Hargrove. 2020. The Lay of the Land: Fetal Alcohol Spectrum Disorder (FASD) as a Whole-body Diagnosis. In The Routledge Handbook of Social Work and Addictive Behaviors, ed. Audrey L. Begun and Margaret M. Murray, 191–215. London: Routledge. Jackson, Paul Z. 1995. Improvisation in Training: Freedom Within Corporate Structures. Journal of European Industrial Training 19: 25–28. https://doi. org/10.1108/03090599510083413. Jonsson, Egon. 2019. Fetal Alcohol Spectrum Disorders (FASD): A Policy Perspective. The Canadian Journal of Psychiatry 64: 161–163. https://doi. org/10.1177/0706743718773706. Kambeitz, Cassondra, Marilyn G. Klug, Jacob Greenmyer, Svetlana Popova, and Larry Burd. 2019. Association of Adverse Childhood Experiences and Neurodevelopmental Disorders in People with Fetal Alcohol Spectrum Disorders (FASD) and Non-FASD Controls. BMC Pediatrics 19: 1–9. https:// doi.org/10.1186/s12887-­019-­1878-­8. Klugman, Craig M., and Erin Gentry Lamb, eds. 2019. Research Methods in Health Humanities. Oxford University Press. Liboiron, M., Ammendolia, J., Winsor, K., Zahara, A., Bradshaw, H., Melvin, J., … and Fürst, B. 2017. Equity in Author Order: A Feminist Laboratory’s Approach. Catalyst: Feminism, Theory, Technoscience 3 (2). Lorde, A. 1982. Learning from the 60s. In Sister Outsider: Essays and Speeches, ed. Audre Lorde and Mahogany L. Browne, 13444. New York: Penguin Books. May, P.A., Gossage, J.P., Kalberg, W.O., Robinson, L.K., Buckley, D., Manning, M., and Hoyme, H.E. 2009. Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in school studies. Developmental Disabilities Research Reviews 15 (3): 176–192. Malbin, Diane V. 2004. Fetal Alcohol Spectrum Disorder (FASD) and the Role of Family Court Judges in Improving Outcomes for Children and Families. Juvenile and Family Court Journal 55: 53–63. https://doi. org/10.1111/j.1755-­6988.2004.tb00161.x. Mela, Mansfield, Hanlon-Dearman Ana, A.G.  Ahmed, Susan D.  Rich, Rod Densmore, Dorothy Reid, Alasdair M. Barr, David Osser, Tara Anderson, Bola Suberu, Osman Ipsiroglu, Hasu Rajani, and Christine Loock. 2020. Treatment

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Algorithm for the Use of Psychopharmacological Agents in Individuals Prenatally Exposed to Alcohol and/or with Diagnosis of Fetal Alcohol Spectrum Disorder (FASD). Journal of Population Therapeutics and Clinical Pharmacology 27: e1–e13. https://doi.org/10.15586/jptcp.v27i3.681. Montoya, Michael J., and Erin E.  Kent. 2011. Dialogical Action: Moving from Community-based to Community-driven Participatory Research. Qualitative Health Research 21: 1000–1011. https://doi.org/10.1177/1049732311403500. Morse, Lucy A., Linda Xiong, Vanessa Ramirez-Zohfeld, Seltzer Anne, Becca Barish, and Lee A. Lindquist. 2018. Humor Doesn’t Retire: Improvisation as a Health-promoting Intervention for Older Adults. Archives of Gerontology and Geriatrics 75: 1–5. https://doi.org/10.1016/j.archger.2017.10.013. Norsigian, Judy. 2011. Our Bodies, Ourselves. New York: Simon and Schuster. Oldani, M. 2009. Uncanny Scripts: Understanding Pharmaceutical Emplotment in the Aboriginal Context. Transcultural Psychiatry 46 (1): 131–56. https:// doi.org/10.1177/136346150910229. Panter-Brick, Catherine, and Mark Eggerman. 2018. The Field of Medical Anthropology in Social Science & Medicine. Social Science & Medicine 196: 233–239. Petrelli, Berardino, Joanne Weinberg, and Geoffrey G.  Hicks. 2018. Effects of Prenatal Alcohol Exposure (PAE): Insights into FASD Using Mouse Models of PAE. Biochemistry and Cell Biology 96: 131–147. https://doi.org/10.1139/ bcb-­2017-­0280. Popova, S., Lange, S., Bekmuradov, D., Mihic, A., and Rehm, J. 2011. Fetal alcohol spectrum disorder prevalence estimates in correctional systems: A systematic literature review. Canadian Journal of Public Health 102 (5): 336–340. Putland, Christine. 2008. Lost in Translation: The Question of Evidence Linking Community-based Arts and Health Promotion. Journal of Health Psychology 13: 265–276. https://doi.org/10.1177/1359105307086706. Rajeev, Priya Nair, and Subramanian Kalpathi. 2016. Let’s Play: The Use of Improv Games in Change Management Training: A Case Study. Industry and Higher Education 30: 149–154. https://doi.org/10.5367/ihe.2016.0299. Ritfeld, Gaby J., Julie A. Kable, Jennifer E. Holton, and Claire D. Coles. 2021. Psychopharmacological Treatments in Children with Fetal Alcohol Spectrum Disorders: A Review. Child Psychiatry & Human Development 53 (2): 268–277. https://doi.org/10.1007/s10578-­021-­01124-­7. Rowbottom, Lisa, Noorfarah Merali, and Jacqueline Pei. 2010. Interventions for Non-biological Caregivers of Children with Fetal Alcohol Spectrum Disorder. Developmental Disabilities Bulletin 38: 35. Salmon, Amy. 2011. Aboriginal Mothering, FASD Prevention and the Contestations of Neoliberal Citizenship. Critical Public Health 21: 165–178. https://doi.org/10.1080/09581596.2010.530643. Sins Invalid. 2009. https://www.sinsinvalid.org/.

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Stade, B.C., Bailey. C., Dzendoletas. D., Sgro. M., Dowswell. T., & Bennett. D. 2009. Psychological and/or educational interventions for reducing alcohol consumption in pregnant women and women planning pregnancy. The Cochrane Library. Stewart, Michelle. 2015. Workshop Scribbles, Policy Work and Impact: Anthropological Sensibilities in Praxis at an FASD Workshop. Anthropology in Action 12: 24–35. Stewart, Michelle. 2016. The Fictions of Prevention: Fetal Alcohol Spectrum Disorder and Narratives of Responsibility. North American Dialogue 18 (2): 55–66. Stewart, Michelle, Rebecca Caines, and Andrea Kotlar-Livingston. 2020. On Neoliberal Thirst, Audit Hunger, and Sustaining Strengths-Based Research in Community and Academy. The Canadian Journal of Action Research 21: 67–86. Streissguth, A.P., Barr, H.M., Kogan, J., and Bookstein, F.L. 1996. Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Final report to the Centers for Disease Control and Prevention (CDC). 96–06. Thanh, Nguyen Xuan, and Egon Jonsson. 2016. Life Expectancy of People with Fetal Alcohol Syndrome. Journal of Population Therapeutics and Clinical Pharmacology 23: e53–e59. Williams, Robyn Deanne. 2018. Understanding Fetal Alcohol Spectrum Disorder (FASD) through the Stories of Nyoongar Families and how can this Inform Policy and Service Delivery. Curtin University: http://hdl.handle. net/20.500.11937/70736. Accessed 21 January 2022. Winsor, Katharine Dunbar. 2020. An Invisible Problem: Stigma and FASD Diagnosis in the Health and Justice Professions. Advances in Dual Diagnosis 14: 8–19. https://doi.org/10.1108/ADD-­07-­2020-­0014. Withers, A.J. 2012. Disability Politics and Theory. Winnipeg: Fernwood Publishers. Young, Rhea, Paul M.  Camic, and Victoria Tischler. 2016. The Impact of Community-based Arts and Health Interventions on Cognition in People with Dementia: A Systematic Literature Review. Aging & Mental Health 20: 337–351. https://doi.org/10.1080/13607863.2015.1011080. Myles Himmelreich  is a well-known national and international consultant and trainer on Foetal Alcohol Spectrum Disorder (FASD). Myles brings his own personal experiences as an individual with FASD by sharing an inside perspective to help society better understand and normalize FASD. Myles has been involved in the development of unique health research projects and innovative programmes and policy work. Myles has had his research published in the fields of health and social science. 

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Michelle Stewart is an associate professor at the University of Regina, Saskatchewan, Canada. Michelle is an interdisciplinary scholar trained in Science and Technology Studies, and Visual and Political Anthropology. Michelle is an applied researcher with projects focused on cognitive disabilities, mental health, and racialized inequalities with direct attention to settler colonialism. Michelle is a community-based researcher and artist with projects across Canada and overseas. Michelle focuses on high-impact applied research and arts projects, evaluation, policy, and knowledge translation. Michelle has held Social Sciences and Humanities Research Council of Canada (SSHRC), Canadian Institutes of Health Research (CIHR), and Canada Council funding and places an emphasis on openaccess, community-driven projects and collaborations.

CHAPTER 10

Deconstructing Disability from a Global South Perspective: Examples from an Interpretive Phenomenological Study Festus Yaw Moasun

Introduction This chapter draws on knowledge and experience gained from researching disability in the Global South, particularly in Ghana, to discuss the role belief systems, culture, language, and the local economy play in defining disability and determining the citizenship experiences of persons with disabilities (PWDs). I draw largely on literature in the African context and cite voices from an interpretive phenomenological study conducted with PWDs from the Konkomba ethnic group in rural Northern Ghana. The aim of the chapter is to demonstrate how culture, language, belief systems, and the local economy conjointly influence a people’s epistemology of disability and the consequent experiences of PWDs. This chapter seeks to

F. Y. Moasun (*) Faculty of Social Work, University of Regina, Regina, SK, Canada e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_10

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engender a discourse to reconstruct an epistemology of disability that does not blame the individual for their conditions, and to devolve the concept from the body of the person to one that connotes an interaction among bodily functions and structures, activity limitations, and environmental factors such as physical, social, and attitudinal barriers (World Health Organization [WHO] 2001) from a health humanities approach. Such a construction has the potential to improve the experiences of personhood and citizenship for PWDs. Although disability scholars argue against the tendency to equate disability to disease or illness, there is a consensus that disability and health are intricately connected such that it is almost impossible to view them distinctively. This connection makes it convenient to discuss them in tandem—the reason a health humanities perspective fits an explication of disability and the experiences of PWDs. Now more than ever is the appropriate time to embark on this trajectory because health humanities is a developing field (Crawford 2020) and its early introduction in disability discourses, particularly in Africa, will be beneficial to disability practice now, and in the long run. For example, Singh et al. (2022) found that the introduction of health humanities tools in training medical school learners resulted in their ability to explore struggles and oppressions of patients and to understand their diversity, dignity, autonomy, disablism, and social exclusion among other experiences. The construction and definition of disability is highly influenced by time and space. Within these imperatives, cultural values and norms, traditions, and belief systems have a significant influence on how disability is conceived and defined. This has resulted in not only different conceptions of disability but how the concept has evolved over time. Some cultures have advanced faster in their understanding of disability than others. In the Global North, the epistemology of disability has evolved from one emanating from a moral or religious perspective to a rights-based perspective (Retief and Letšosa 2018). However, in many parts of the Global Southern developing world, talks of rights-based approaches to conceive and understand disability are seemingly rhetorical, as the conception of disability is still very much rooted in the moral or religious and the medical perspectives. This has negative implications for how society relates to and treat PWDs. In many instances, PWDs become subjects of blame for their conditions (Livingston 2005) and many of them fall victim to social and economic exclusions that result in impoverishment and their overall poor health and social wellbeing.

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Beyond the socio-cultural factors contributing to the epistemology of disability in the latter context, the local economy and societal expectations are significant factors in the construction of disability in many societies (Galvin 2003; Meekosha 2008). Particularly in agrarian and impoverished communities, people’s experiences of disability depend to a large extent on their ability to contribute directly to the productivity and income of their households. Low or noncontribution, which is mostly the case for many PWDs, leads to a lower, or outright, denial of personhood. In my interpretive phenomenological study of disability in Global Southern contexts, I have found the degree of personhood ascribed to individuals with disabilities to directly impact their citizenship, health, and social wellbeing. This makes an application of a health humanities perspective essential in disability studies, particularly in the African context, where the “heritage and deep history of art, humanities, and cultural productions is undoubtedly plenteous, making it a rich context in which to curate unrecognized practices” (Ifeobu 2020, 231). Health humanities present an opportunity for disability scholarship and practices in Africa to source from the “collaborative, contextual and culturally needs-based consideration” (Ifeobu 2020, 231) of the different epistemologies of the African peoples to inform a comprehensive approach to addressing the needs and aspirations of PWDs. The interdisciplinary nature of the field makes it even more suitable for African disability discourses, as it gives us the ability to harmonize the different ontologies and epistemologies of disability in such multicultural and varied belief systems. This way, we can creatively and innovatively address the complex experiences of PWDs that emerge from the multiple ontologies and epistemologies.

Tracing the Evolving Definition of Disability in the Global Context Disability is a nebulous phenomenon whose definition has evolved over time. For this reason, it has been referred to as a “complex, dynamic, multidimensional, and contested” phenomenon (WHO 2011, 3). In the 1980 definition by WHO, disability was seen as a loss or abnormality in the physical, psychological, or anatomical structure or function of the person. Thus, disability was contextualized solely as a health and medical problem and defined as “any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered

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normal for a human being” (WHO 1980, 143). Stanford Encyclopedia of Philosophy (2016, 2) shows that disability used to be a concept covering: congenital absence or adventitious loss of a limb or a sensory function; progressive neurological conditions like multiple sclerosis; chronic diseases like arteriosclerosis; the inability or limited ability to perform such cognitive functions as remembering faces or calculating sums; and psychiatric disorders like schizophrenia and bipolar disorder. There have been criticisms that defining disability from the medical perspective suggests that medical treatment was required where possible to prevent or correct the “abnormality” (WHO 2001). This approach faulted the individual for the challenges faced in terms of functional limitation and placed power in the hands of the medical professional when dealing with PWDs even in cases where medical treatments were not required (Taylor 2013). The emergence of the social model of disability in the 1970s (Oliver 1990; Union of the Physically Impaired Against Segregation [UPIAS] 1976) triggered processes that led to alternative definitions of disability that shifted fault from individuals to the social context in which they live. Disability is defined as experiences emanating from socio-cultural and environmental barriers that marginalize and exclude persons with impairments (Albert 2004; Oliver 1990; Shakespeare and Watson 2002; Sullivan 2011). With this definition, impairments only play passive roles as evocators in the disability of people (Stanford 2016). However, it is difficult to deny the active roles of both the impairment and the environment in the experiences of PWDs (Bostan et  al. 2015; Shakespeare 2006; United Nations 2006; WHO 2001, 2011). As a result, the UN Convention on the Rights of PWDs acknowledges that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others” (UN 2006, 1). This acknowledgement proceeds from the refocusing of the definition of disability by the International Classification of Functioning, Disability and Health (ICF). The ICF defines disability as “a complex [phenomenon] that is both a problem at the level of a person's body, and a complex and primarily social [phenomenon] … an interaction between features of the person and features of the overall context in which the person lives” (WHO 2001, 9). Three factors combine to define disability in the current context. They include the role of the individual’s bodily conditions, activity limitations, and the social context of the individual such as physical,

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social, and attitudinal barriers (WHO 2001). Livingston characterizes disability from this perspective as a “biosocial identity that is at once both biologically grounded and socially parsed” (2005, 7). This approach to defining disability negates it as a binary between the individual and the environment and merges the two as mutually inclusive factors that contribute to an individual’s experience of impairment.

Models of Disability There are several models developed to shape disability discourse. Key among these is the moral or religious model, the medical, the social, the identity, the human rights, the cultural, the economic, the charity, and the limits models (Oliver 1990; Retief and Letšosa 2018). While some of these models are increasingly losing relevance in disability discourses across the world, they remain relevant to the understanding of disability and the experiences of PWDs in dispensations that are usually characterized by the abuse, neglect, marginalization and infanticide of adults and children with disabilities (Anderson 2013; Retief and Letšosa 2018). In developed Global Northern disability discourses, for example, the moral model of disability appears to be losing relevance. There is barely mention of this model in current disability discourse. Rather, rights-based perspectives such as the human rights model have become more prominent. The rise to prominence of the human rights model is attributable to different factors, among which are the increasing realization that PWDs experience inequalities in vital areas such as healthcare access, employment, and social and political participation (WHO 2011). PWDs also experience various forms of violence and neglect that negatively impact their dignity (WHO 2011). In these dispensations, stigma around the sources of disabilities do not appear to be matters of concern. However, while PWDs experience arguably more grievous forms of human rights violations in the developing world, particularly in parts of Africa (Moasun and Sottie 2014; Denham et al. 2010), the beliefs about the sources of individuals’ impairments and disabilities are often key precursors to serious mistreatments. Hence, any attempt to address the negative experiences by individuals with impairments in these dispensations should take an epistemological approach. This implies that disability discourse in these dispensations must necessarily keep in sight the beliefs that underpin society’s understanding of disability and how this understanding impact people’s daily interactions with PWDs.

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It is in considering the above dynamics that I suggest that contributors to African disability discourse make the conscious effort to not jump on the bandwagon of writing from rights-based perspectives in our bid to ensure our works get published but to remain focused on producing knowledge that best serve the population we research and write about. In this regard, rights-based approaches may be important but for an epistemological understanding of disability, we are better served with models such as the moral/religious model which I have already intimated is generally losing relevance in disability discourse. The Medical Model of Disability The medical model of disability, also known as the individual model or the illness approach to disability (Sullivan 2011) locates disability solely in the body of the person and identifies the disability as a medical condition that requires the expertise of a medical practitioner to cure or rehabilitate (Crabtree 2013; SEP 2016; Sullivan 2011). The model assumes that the rehabilitation of individuals with disabilities will enable them to overcome their limitations and thus return them to “normalcy” (Albert 2004; Sullivan 2011). The medical model absolves society from any contributions to the fate of PWDs and posits their adjustment to the norms and expectations of society if they are to fit in the system (Sullivan 2011). The medical approach to disability has been criticized (Anastasiou and Kauffman 2013; Shakespeare and Watson 2002) with the main arguments especially, by PWDs, being that it leads to the lowering of their “self-­ esteem, undeveloped life skills, poor education and consequent high unemployment levels” (Crabtree 2013, 1). The introduction of health humanities in disability discourse provides a cure to some of the criticisms against the medical model of disability. Health humanities aims to disrupt the power in the healthcare system that privileges medical professional expertise over lived experiences of the users of medical services (Crawford 2020). It champions the voices and perspectives of patients, their families, and the social environment in the healthcare system (Crawford 2020). This is particularly important for PWDs who experience double vulnerability by virtue of their impairments and the exertion of suppressive power on them by the healthcare system. The perspectives of the family and the social environment are important in the way we approach issues confronting PWDs, but also the role that these factors play in PWDs’ experiences of disability (Oliver 2004). It is particularly because of this that health

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humanities are important as it introduces creative ways to addressing family and environmental issues affecting the health and wellbeing of PWDs. The Social Model of Disability The social model of disability proceeds from the view that irrespective of a person’s impairment, they are as equal and capable as the able-bodied (Albert 2004; Shakespeare and Watson 2002; Sullivan 2011). The model posits that the inadequacies of PWDs arise from the physical (e.g. inaccessible buildings) and societal (legal, cultural and attitudinal) barriers that serve to exclude them from full participation in society (Albert 2004; Oliver 1990; Shakespeare and Watson 2002; Sullivan 2011). For the proponents of this model, disability is not a medical condition to simply be treated by a medical practitioner. They argue that barriers that disable persons with impairments are external rather than internal to them (Albert 2004; Oliver 1990; Shakespeare and Watson 2002; Sullivan 2011). Three key tenets underlie the social model of disability (Oliver 2004). The first is a call to shift emphasis from the limitations of individual due to impairments to environmental barriers, including inhibitive cultural practices. The second argues that the problems of persons with impairments such as unemployment go beyond social organization and labour market restrictions to encompass aspects such as transport, education, and culture. The third tenet posits that despite the social model’s stand on the individual/medical model of disability, the model does not discount the need for individualized interventions like medical, rehabilitation, or education where such approaches are deemed helpful to persons with impairments. It has been suggested that excessive investments in the individual or medical approaches to interventions have resulted in minimal positive outcomes for PWDs (Oliver 2004). This made the development of other models such as right-based perspectives necessary. The Moral/Religious Model of Disability The moral model, also known as the religious model of disability, is the oldest among the models that seek to inform and shape disability discourse (Retief and Letšosa 2018). Some have attributed its origin to Judeo-Christian traditions (Retief and Letšosa, 2018), even though in my study of the ontology and epistemology of disability in the African context I find that traditional African religious beliefs—which have no connection

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with Judeo-Christian traditions—share similar understanding of disability. At the heart of the moral/religious model of disability is the belief that disability is a punishment from God, the gods, ancestral, or other spirits for sins committed by an individual or a relative (Retief and Letšosa 2018). From a Judeo-Christian perspective, the Bible is replete with examples of belief that disabilities result from sin or transgressions from moral or religious standards.1 Also, there is a strong belief in predicaments as a test of faith by God. Hence, “undesirable” conditions such as impairments and chronic diseases are perceived to be the result of God testing the faith of the affected persons. It is only those who pass this test that get physical healings (Retief and Letšosa 2018). If anyone believed to be tested by God does not get healed, the implication is that such an individual is deemed to lack faith in God. The beliefs about disability and its sources have consequences for how PWDs are treated, and also their family members. For instance, the belief that an individual’s disability could be the result of the sins of their parents or other family members means that their families are equally susceptible to social exclusion and other forms of abuse (Rimmerman 2012). This has implications for neglect and other forms of mistreatment of PWDs. For instance, families in their bid to absolve themselves of any form of responsibility for an individual’s condition could decide to cast out the individual from the family. Others may take the extreme measure to eliminate particularly children with disabilities to gain the acceptance of society by killing them (Denham et  al. 2010; Moasun and Mfoafo-M’Carthy 2021; Moasun and Sottie 2014). In most Africa societies, the birth of a healthy (desirable) child is a sign of harmony between the living and their ancestral or guardian natural spirits (Mbiti 1991). However, the birth of a child who appears differently, gives rise to negative interpretations. In many societies in Ghana, it is believed that the misdeeds (sins) of parents can incur the anger of the spirits who punish them with children who have deformities (Allotey and Reidpath 2001; Botts and Evans 2010). There is also a belief in Ghanaian society that parents can spiritually exchange a part of the body of their child for money, leading to the child being born with, or developing physical defects in that part of the child’s body (Agbenyega 2003). Additionally, in some societies in Ghana there is the belief that animals such as snakes and crocodiles have special powers to punish people who are mean to them by causing them to give birth to children who have deformities (Agbenyega 2003).

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It is important to emphasize the relevance of the moral/religious model of disability in current disability discourse in the African context, as “local African concepts of disability reflect the boundaries of a worldview that includes ideas of life and death, this world and the supernatural, social relations, causal attributions, and a categorization of the extraordinary body” (Devlieger 2015, 91). Thus, disability is understood both as a physical and as a spiritual phenomenon. It is complicated in the African context, where “people with bodily differences in a cultural framework are allowed, by contrast, their full humanity, or classified as “other,” that is outside of the human realm or as more or less human” (Devlieger 2015, 80). There are rare instances where persons with bodily differences are arrogated positive superhuman qualities in Africa. However, in most instances, they are perceived in a negative light, leading to negative attitudes and treatments, including the killing of those who are considered “outside of the human realm or less human” (Denham et  al. 2010; Devlieger 2015; Moasun and Mfoafo-M’Carthy 2021; Moasun and Sottie 2014). There are especially those children referred to as bad children who are considered nonhuman, who “represent evil, death, and the supernatural world” (Devlieger 2015, 91). In many societies in West Africa, including Ghana, some children with disabilities for this reason are variously referred to as spirit, bad, evil, snake, or river children (Allotey and Reidpath 2001; Bayat 2015; Botts and Evans 2010; Denham et  al. 2010; Kassah et  al. 2012; Oppong-Ansah 2011). Signs of a “snake child”—most likely a child with cerebral palsy—include the fact that the child is unable to move, hold his head up, or walk at 12 months old (Bayat 2015, 6). In Ghana, many of the children who are referred to as river children have Down’s Syndrome (Agbenyega 2003). Similarly, predominantly in the Northern parts of Ghana, children who are regarded as spirit children are mostly born with hydrocephalus, broken limbs, teeth, facial hair, or other deformities (Denham et al. 2010). While there is no national survey to demonstrate the extent to which belief in spiritual sources and by extension the moral/religious model of disability is entrenched in Ghana, the result of a small scale survey on the perceptions of rural people about PWDs produced the following results: 68% of the sample believed a curse on the family could result in the disability of members, 62% believed that evil spirits caused disabilities, and 50% believed divine punishment from God caused disabilities (Fiasorgbor and Ayagiyire 2015). A similar study established that 38.2% of the

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respondents believed in curses as causes of disabilities (Slikker 2009, 34). Another study found that 40% of participants believed epilepsy was caused by factors such as “breaking taboos, spiritual/supernatural causes, and punishment of some sort for social wrongs” (Adjei 2019, 317). While in most cases, there may be belief in scientific causes of impairments, literature suggests that even in cases where people accept that disabilities could be caused by physical means, several African societies continue to maintain belief that most, if not all, causes of disabilities have spiritual or divine undertones (Devlieger 1999; Kisanji 1995; Kiyaga and Moores 2003). In my study of the experiences on personhood and citizenship of PWDs, a 40-year-old woman with physical impairment described her experience with an illness and how it degenerated into an impairment due to beliefs central to the moral/religious model of disability: [B]ut you know as Konkombas when somebody sees you suffering, they will all be proffering the causes of your suffering and what they think can be done to remedy it. … They said somebody cast a spell on me and that is why it happened like that. … Native healers used herbs to treat it but for a long time, it did not work, then I was taken to the hospital, and they performed surgery on it and then I am now able to manage it.

The extract above conveys a sense that such beliefs, while they have implications for the maltreatment of PWDs, could in themselves contribute to the onset of impairments that result in disabilities. Principally, if a person’s condition is believed to stem from a spiritual source, it only means that the person must resort to spiritual sources for antidotes. This means a delay in seeking treatment for medically treatable conditions, leading to the aggravation of otherwise minor conditions into impairments and then disabilities. Defining Disability in the Ghanaian Perspective: Linguistic Challenges It is not easy to arrive at a Ghanaian traditional definition of disability as there are many different languages and cultures in the country. Literature suggests that in Ghana, like in many African societies, not all PWDs are necessarily perceived as having disabilities. For many Ghanaians, disability connotes physical impairments, hence, persons with learning difficulties and those with epilepsy are likely not to be considered to have disabilities

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in a Ghanaian sense (Boachie-Sarpong 2012; Reynolds 2010). Talle stresses that from the perspective of the Maasai of Kenya that PWDs “are not regarded as a single, unified category towards whom they relate by a standardized set of behaviour” (1995, 56). There is a recognition of “many forms and degrees of physical impairments,” which invokes varied attitudes (Talle 1995, 56). When Ghanaian participants in one study were asked to define disability, most could not define it as a concept but used various descriptions such as “someone who lost one of his senses. One part of the body cannot function well. Someone who is cripple, dumb or deaf” to describe the concept (Slikker 2009, 32). Slikker cites other definitions such as “inadequacies of people” who depend “on others to have a meaningful life”; “someone who is not perfect, not created perfectly”; “disability means something on the body is lacking, it is not a perfect human being”; “a person with a disability is different from the normal” (2009, 33). In another study, participants defined disability as, “[A] disability here in Ghana is defined as people who cannot, who are deformed. Maybe they are also people who have mental disorder, not a disorder you can see” (Reynolds 2010, 200). While epistemologically Ghanaian societies perceive the causes of disability from a moral/religious perspective, when they define the phenomenon they tend to do so from an individual deficit or medical perspective. Functional ability and abnormality are apparent features in most of these definitions that are worth discussing. The latter is simply a matter of power relations; who and what is defined as perfect or normal remains in the hands of the wielders of power (Bourdieu 1990; Foucault 1982). Arguably, the emphasis on functionality has to do with the socio-economic conditions of the local context where disability is being defined. There is a strong connection between poverty and disability in most African societies, making PWDs overly dependent on others for survival (Meekosha 2008; Mitra et al. 2011; Nepveux 2009). Thus, it is not surprising that there would be such emphasis on functionality in the definition of disability. In my study on the personhood and citizenship of PWDs, I made conscious efforts to have participants attempt to define disability as a concept without making referring to specific bodily deficits to further understand the role that society plays in people’s experiences of impairments that result in their disabilities. I encountered a fundamental challenge in this effort due principally to linguistic limitations. Like extant literature has intimated (Talle 1995), among the Konkombas with whom the study was

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conducted, there was no common terminology for disability. Most people referred to their disabilities as sickness (tibunbuun). However, upon consulting Konkomba linguists and Elders, there was a consensus around the term kinandaŋ, which etiologically means destitution as the closest word to the concept of disability. Thus, I adopted this terminology in my interviews. However, recognizing the limitations with the term, I had to explain to the participants what I meant by the term whenever I employed it in a question. I have already made the case for why functionality is central to the definitions of disability that have been attempted by earlier studies. However, it is worth noting the drift in the use of the term destitution to refer to disability and binandam (destitutes) to refer to PWDs. The tenets of the medical model of disability are evident as disability irrespective of form or nature is referred to as a sickness. Yet, the referent to PWDs as destitutes smacks of blaming the individual for their conditions without recourse to the role that society plays in their destitution as per the tenets of social model. When PWDs were asked to define disability in the context of their society, they proffered definitions that connoted a combination of impairment, suffering, poverty, and functional limitations. The 40-year-old woman with a physical impairment who was cited earlier defined disability as follows: It is when an individual cannot do anything and is suffering, when the individual is poor. … For example, our type. … those of us who can’t walk, who can’t do any hard work.

Clearly, we see from this definition the equation of disability to functional limitations, but more importantly, suffering and poverty. The fact that disability is defined from these perspectives clarifies why there was consensus around the use of kinandaŋ to represent disability. More fundamentally, though, is why PWDs should experience suffering and poverty. The understanding that once a person has a disability, they are unable to do anything means that PWDs are less likely to be engaged in paid work. The emphasis on the inability to work as part of the definition of disability speaks to societal expectations of an able-bodied person—one who can contribute to productivity within the society by exerting some amount of physical energy. In reference to the emphasis on the exertion of physical energy, in the context of the local economy where

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the study was conducted, 88.9% of the working population were involved in subsistence agriculture and fishing (Ghana Statistical Service 2014). This makes it difficult for persons with impairments to participate in and contribute productively to the economy. Their inability to add to productive labour due principally to the nature of their local economy causes society to label them as unproductive (Boachie-Sarpong 2012; Voice Ghana 2014). The definition also leads to another fundamental issue—the acceptance of the disability label by PWDs themselves. The individual quoted above was involved in small scale trading which earned her some income. From my understanding of her situation, she only needed capital support and she would do well in her business. However, her lack of capital coupled with her acceptance of the inferiority label arguably made her feel the way she did about herself. The challenge with defining disability makes disability terminologies useful to understanding the epistemology of disability within the Ghanaian context. In any culture, a name provides a reference point for relationships. It enables the culture to provide meaning to a phenomenon. Thus, the label that is given to a particular impairment has the propensity to become the identifier of the individual in society and this becomes the source of local practices towards the person. Once a name is provided for a disability, the name “provides the individual with disability with the beginning of a socialization process that will shape the bodily experience of difference” (Devlieger 2015, 79). Labels are, therefore, powerful instruments which “become the determinant forces that guide our choices as to what to accept and what to reject” (Agbenyega 2003, 2). Most local Ghanaian referents to disability are largely derogatory and equally present the concept as a sickness. Among the Akan and the Ga peoples, PWDs are respectively referred to as yarefo and helatse, that is, sick persons (Nepveux 2009). In my native Likpakpaaln, the language of the Konkomba people, a person with impairments in the legs is called uwab, which means the wrecked one. Among the Nchumburu of the Northern and Oti regions of Ghana, such a person is referred to as kejabo, which means crippled, and a person with hearing and speech difficulties is called kpawu’, which means dumb (Naami et  al. 2012, 101). The Ewe ethnic group of Ghana and Togo refer to persons with epilepsy as dzeanyikplatowo, a term that derogatorily translates as falling-down sicknesses (Agbenyega 2003, 4). Cataract among the Ewe is known as kobi, which is accompanied by the belief that persons with cataract are facing

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punishments from the gods for offences committed by them or their families in line with the moral model of disability (Agbenyega 2003). The Ewe and Ga ethnic groups refer to persons with mental or intellectual disabilities as Asotowo, and Buluu, respectively (Agbenyega 2003). Both terms translate literally as idiots or fools. Similarly, the Akans refer to a person with intellectual disability as Nea wanyin agya n’adwene no’—literally translated as the one who has outgrown his or her mind. In other words, the feeble minded (Agbenyega 2003). In most Akan societies, persons with autism and Down’s Syndrome are labelled as kwasea, kwasea, or gyimi gyimi (Baffoe 2013, 193). Such derogatory referents have negative implications for the ways PWDs are accepted and integrated into society. Literature shows that, in Ghana, there is a general belief in PWDs as unproductive and incapable (Voice Ghana 2014). This greatly affects their ability to participate in various areas of societal life.

Citizenship Experiences of Persons with Disabilities in Ghana The epistemology of disability in any society has ramifications for the citizenship—total inclusion in the socio-political affairs of society—of PWDs (Boachie-Sarpong 2012; Ingstad 1990; Moasun and Mfoafo-M’Carthy 2021; Stone-MacDonald and Butera 2012). Particularly, in Africa, where “attitudes and beliefs on disabilities … are often based on fear and misunderstandings, stereotype …, discrimination” and ultimately a denial of rights and resources (Baffoe, 2013, 188), PWDs face myriad of maltreatments. The WHO (2004) estimated that if properly treated, 70% of the global population of PWDs could productively contribute to society and live fulfilling lives. The reality, however, is that about 90% of PWDs in developing countries face various forms of mistreatments which ultimately affects their citizenship in their societies. Social Citizenship of Persons with Disabilities in Ghana Perhaps the most significant challenge to the citizenship of PWDs in Ghana is their inclusion in the social life of their communities. They are confronted with stigma that results in discrimination, marginalization, and consequent exclusions (Baffoe 2013; Kassah et al. 2012). Literature suggests that generally Ghanaians have felt uncomfortable interacting with

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PWDs leading to neglect and restricted movement or isolation for many of them (Naami and Hayashi 2011). Other sources of literature have shown evidence that many PWDs are hidden from the eyes of the public leading to extreme neglect (Asamoah 2019; Baffoe 2013; Kassah et  al. 2012; Naami and Hayashi 2011; Nepveux 2009). In my study on the personhood and citizenship of PWDs in rural Northern Ghana, a 28-year-old woman with angular kyphosis shares her experiences with social exclusion in the following excerpt: I am always home alone. … Since I am aware that I am a sick [disabled] person, I avoid the companies of those who have the power [abled-­ bodied]…. when I go to the market, people will be pointing fingers and gossiping about me. Sometimes I see them, I hear what they say but I pretend not to have heard and just buy my things and leave. I’m not a thief, and I’m not a destroyer [evil], so why should people point fingers at me and say bad things about me?

One of the tenets of the social models of disability is how societal attitudes constitute barriers that limit the participation of PWDs in social activities. Worrying in this excerpt is the fact that the finger pointing becomes so severe that the victim feels criminalized. Her experience is no longer only about not being able to freely interact with her fellow human beings in society but one that makes her question why because of her bodily condition she is treated like a criminal. While social exclusion is a worrying experience for PWDs, it is not limited to the individuals with disabilities but extended sometimes to their families. Many authors in Ghanaian disability discourse have indicated that families of prospective or marriage couples will refuse or cause marriages to be annulled once there is evidence of disability in a partner’s family line (Attafuah 2000; Kassah 2008). Such stigma contributes to families hiding their members with disabilities or neglecting them (Nepveux 2009; Voice Ghana 2014). Among Konkomba communities, for instance, actions of an individual are deemed to have consequences for multiple families that make up a lineage. In such situations, decision making about the welfare of the family is the responsibility of the lineage head (who is the oldest male) who has the power to control and direct how individual families manage their everyday actions that have dire implications for the lineage. The directives of the lineage head are often inviolable as he derives his authority from the ancestors. This situation makes the protection of PWDs

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more complex, particularly in situations where their impairments are believed to be punishment from supernatural powers. In most instances the immediate family heads are unable to defend and protect their members with disabilities because they would be deemed to not only defy the orders of the lineage heads but those of the ancestors whom the lineage heads represent. What makes this more complicated is the fact that if a person’s condition is deemed to be the result of a punishment from a supernatural power, members of society are cautious in relating to and helping the individual for fear of incurring the wrath of the spirits. Economic Citizenship of Persons with Disabilities The neglect of PWDs due to fear and other already mentioned factors means they must take responsibility for their own health and wellbeing, particularly the adults. This also means defying their bodily limitations to engage in productive activities which are naturally at odds with their capabilities. While it is undeniable that impairments play limiting roles in the ability of PWDs to function effectively (WHO 2001), in the context of subsistence agriculture dominant economies, this challenge is aggravated. This is because in such economies, manual labour rather than mechanized agriculture is the dominant means of productivity. Fundamentally, the challenges faced by PWDs in such labour-intensive economies leads to poverty and hunger even though some of them work hard despite their impairments. The fact that they work hard but produce little gives false credence to the belief in the Ghanaian and other Global South societies that PWDs are unproductive and incapable (Boachie-Sarpong, 2012; Voice Ghana, 2014). For example, in the following excerpt, a 65-year-old man in a wheelchair describes his work routine: I am not able to sow seeds, but I can help the woman weed. I crawl as I weed. It is difficult to do that but what can I do? Because I am unable to weed with speed, sometimes the weeds destroy a portion of the farm, and I will manage to salvage a portion. … When I go to harvest termites for my fowls, I use the tricycle through the path and when I get to where I can locate an anthill, I leave the tricycle and crawl through the bush to the anthill. … When I return and harvest the termites, if I don’t have one of my children with me, I crawl and push the container gradually until I reach my tricycle and place the container on the tricycle and ride back.

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Despite his age and impairment, the individual continued to work hard. However, other factors external to him contribute to his inability to produce effectively. If he was able to afford mechanized agricultural services to till and sow seeds on his farm or herbicides to control the weeds among his crops—activities which some of his able-bodied counterparts were able to afford—he would have been in a better position than he was at the time of the interview, or if he had money to buy poultry feed for his farm birds rather than go hunting for termites to feed them, he could have increased his output, and this would have improved his finances and placed him in a better position. While this individual struggled to fend for himself and his family of five, attitudes of some extended family members contributed to his experience of poverty as he narrated in the following extract: When Ukalnja [an extended family member] was alive, he saw how I was suffering and gave me a cashew farm so that the woman can be harvesting it for us to live on. But whenever the fruits mature, they [family members] will leave very early at dawn and harvest the fruits before my wife will get to the farm. If I complain, they will threaten me that If I ever step on the farm, they will kill me.

Proceeding from the argument that external factors to individuals with disabilities contribute to limitations in their productivity, it is impossible to understand how this individual can thrive if family members react so negatively to him. They refuse to support him and simultaneously deprive him of the little that is bequeathed to him. The experiences shared in the excerpts largely confirm the position of the social model of disability that the dysfunction of PWDs stems from the environment rather than the individual (Albert, 2004; Oliver 1990). While this is true, it is important not to lose site of the fact that the individual’s impairments are fundamental to their limitations. Thus, the position of the WHO (2001) that disability arises from the combination of three factors: the bodily limitations, activity limitations and environmental factors such as negative attitudes that inhibit the functional abilities of PWDs holds true in this regard. Faced with the challenge to find a fit in a poor labour-intensive economy, it would be expected that PWDs might do well in the service sector. However, negative attitudes and stigma stemming from adverse beliefs about disability as noted above equally present serious barriers to their economic inclusion in this sector (Baffoe, 2013; Naami et  al. 2012;

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Nepveux 2009; Geurts and Komabu-Pomeyie 2016; Voice Ghana 2014). For instance, the woman with angular kyphosis referred to above is trained as a fashion designer, but complained that she was unable to establish a business for herself due principally to lack of patronage: People do not value me to bring their things to my house for me to sew for them. It is only my sisters and nieces who patronise my service, but I cannot charge them for it. … I learned how to sew both male and female clothing. … My machine is now gathering dust. All those I graduated with have established their shops and are working.]

Despite working hard to train as a fashion designer, the woman remains impoverished and on the verge of hunger each year during the lean season. Geurts and Komabu-Pomeyie (2016) shared a similar experience of one of them being sacked from her position as a shop attendant in the southern part of Ghana because sales started dwindling the moment one of them, who was born without forelimbs, was employed to work in the shop. These experiences present far-reaching consequences for PWDs in the context of this chapter. For instance, there is an implicit suggestion that they do not belong to society. If people are unable to engage in the dominant economic activities of their societies, they do not receive the required social support from their communities and yet people would not patronize their services because of their bodily appearances: how are they expected to survive under such circumstances?

Conclusion The chapter establishes the relevance of the moral model of disability in the epistemology of disability in the Ghanaian context, and that the medical and social models underpin the definition and experiences of disability by persons with impairments. The chapter details some fundamental struggles of PWDs towards exercising their citizenship as bona fide members of their societies to improve their health and wellbeing. Addressing these challenges, entrenched in belief systems and poor local economies, is a daunting task. To improve the experiences of PWDs would have to begin with a reconstruction of the fundamental beliefs about disabilities. For example, there is a deep belief in spiritual causes of disability which somehow makes others to relate with PWDs with fear and caution. There is a need to desensitize societies through education on the medical/

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physiological and the physical factors that contribute to impairments and disabilities. Many local languages refer to impairments and disabilities with labels that are either derogatory or have derogatory implications, and disability labels are fundamental to how others socialize and relate to PWDs (Agbenyega 2003). For this reason, it is important that any effort to shift a people’s epistemology of disability includes the discouraging of negative terminologies and promoting positive disability language. Doing this stands to improve the personhood and citizenship experiences of PWDs. The nature of disability and the experiences of PWDs are inevitably public health concerns. For this reason, it would be helpful if we begin to position the negative experiences of PWDs in a public health context and use a creative public health approach (Crawford 2020) to address the issues confronting them. This is possible, as music, for example, has been used to improve the health and wellbeing of individuals experiencing depression and mental health concerns (Fancourt et al. 2016). Music and other creative arts approaches can be used to craft and convey positive disability messages that have the potential to shape the language and epistemology of disability among a people. This can significantly improve the personhood and citizenship of PWDs and, thus, their health and wellbeing.

Note 1. An example of Christian belief in disability as emanating from sin is seen in the Bible in the ninth chapter of the Book of John (John 9:2), when Jesus had healed a blind man and His disciples directly asked to know whether it was the man or his parents’ sins that had caused him to be born blind. From this Biblical example, it is evident what the society thought of the sources of blindness. There are other examples from a Biblical context where mobility challenges, hearing loss, mental illness, and chronic illnesses otherwise referred to in the Bible as uncleanness were perceived to result from sin.

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Retief, Marno, and Rantoa Letšosa. 2018. Models of Disability: A Brief Overview. HTS Teologiese Studies/Theological Studies 74 (1): a4738. https://doi. org/10.4102/hts.v74i1.4738. Reynolds, S. 2010. Disability Culture in West Africa: Qualitative Research Indicating Barriers and Progress in the Greater Accra Region of Ghana. Occupational Therapy International 17 (4): 198–207. Rimmerman, Arie. 2012. Social Inclusion of People with Disabilities: National and International Perspectives. Cambridge: Cambridge University Press. https:// doi.org/10.1017/CBO9781139035668. Shakespeare, Tom. 2006. Disability Rights and Wrongs. London: Routledge. Shakespeare, Tom, and Nicholas Watson. 2002. The Social Model of Disability: An Outdated Ideology? Research in Social Science and Disability 2: 9–28. Singh, Satendra, Amir M.  Khan, Upreet Dhaliwal, and Navjeevan Singh. 2022. Using the Health Humanities to Impart Disability Competencies to Undergraduate Medical Students. Disability and Health Journal 15 (1): 101218. https://doi.org/10.1016/j.dhjo.2021.101218. Slikker, Jacqueline. 2009. Attitudes Towards Persons with Disability in Ghana. Voluntary Service Overseas (VSO). Stanford Encyclopaedia of Philosophy. 2016. Disability: Definitions, Models, Experience. https://plato.stanford.edu/entries/disability/ Stone-MacDonald, Angi, and Gretchen Butera. 2012. Cultural Beliefs and Attitudes about Disability in East Africa. Review of Disability Studies 8 (1) http://www.rdsjournal.org/index.php/journal/issue/view/v8i1/showToc. Sullivan, Kathryn. 2011. The Prevalence of the Medical Model of Disability in Society. 2011 AHS Capstone Projects. Paper 13. http://digitalcommons.olin. edu/ahs_capstone_2011/13 Talle, Aud. 1995. A Child is a Child: Disability and Equality among the Kenya Maasai. In Disability and Culture, ed. Benedicte Ingstad and Susan R. Whyte, 56–72. Berkley, CA: University of California Press. Taylor, Ashley. 2013. “Lives Worth Living”: Theorizing Moral Status and Expressions of Human Life. Disability Studies Quarterly 33 (4) http://dsqsds. org/article/view/3875. Union of the Physically Impaired Against Segregation. 1976. Fundamental Principles of Disability. London: UPIAS. United Nations. 2006. Convention on the Rights of Persons with Disabilities. Geneva: UN. World Health Organization. 1980. International Classification of Impairments, Disabilities, and Handicaps a manual of classification Relating to the Consequences of Disease. Geneva: WHO. ———. 2001. International Classification of Functioning, Disability and Health. Geneva: WHO.

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———. 2004. Disability and Rehabilitation Status: Review of Disability Issues and Rehabilitation Services in 29 African countries. Geneva: WHO Disability and Rehabilitation Team. ———. 2011. World Report on Disability. Geneva: WHO. Festus Yaw Moasun  is Assistant Professor of Social Work at the University of Regina, Saskatchewan, Canada. His research focuses on (dis)Ability, mental health, decoloniality and politics of knowledge creation, immigrant populations, and the intersection of culture with oppression and marginalization. His teaching cuts across courses on foundations in social work, research methods, critical thinking, and ethics. Dr. Moasun is a member of the Equity Committee of the Faculty Social Work at the University of Regina.

CHAPTER 11

The Networked Human: Coronavirus, Facebook, and Indian Politics Rimi Nandy, Agnibha Banerjee, and Santosh Kumar

Introduction Infectious diseases have altered the course of human history, reaching at least as far back as the plague of Justinian in the sixth century, followed by Black Death in the eleventh century, to the latest case of the COVID-19 pandemic (Piret and Boivin 2021). The term pandemic can be defined as a disease which has “wide geographic extension, disease movement, high attack rates and explosiveness, minimal population immunity, novelty, infectiousness, contagious, and severity” (McMillen 2016, 2). The study of pandemics is not restricted to medical aspects alone. Prevailing social,

R. Nandy (*) • A. Banerjee Department of Language and Literature, School of Liberal Arts and Culture Studies, Adamas University, Kolkata, India e-mail: [email protected]; [email protected] S. Kumar School of Liberal Arts and Culture Studies, Adamas University, Kolkata, India e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_11

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political, and economic structures influence the spread of diseases and are also influenced in turn. The COVID-19 pandemic has transformed various aspects of life, among which a primary element is human interaction and communication. The highly infectious nature of the coronavirus resulted in a global lockdown to control its spread (Onyeaka et al. 2021). The lack of availability of physical spaces for human interaction paved the way for the shift to the digital space. Consequently, the boundary between the physical and the digital is made flexible and porous. The digital space is a conglomeration of interconnected networks. The term network is increasingly used in the context of social media, yet it also signifies links and connections in the social space generally (Lindgren 2017, 94–100). This chapter focuses on the representation of political sentiments on the social networking site Facebook, with a specific reference to the Indian context relating to the spread of the coronavirus as a major determining factor in changing the interactive network within the space of Facebook and contextualized within critical health humanities. The social and cultural construction of the pandemic and its perception greatly influenced the political narrative on Facebook. The rising death toll, unavailability of vaccines, and increasing fear among Indians have evolved the Facebook platform to a space where the virus and the human interact through their interconnectivity. The coronavirus, as a non-human agent, has led to a massive change in the social fabric. The chapter draws upon Bruno Latour’s Actor-Network Theory and a posthuman critical perspective to analyse the evolving space of Facebook in the context of the Indian political realm and the perception and expression of COVID-19 through a study of Facebook posts, shares, and comments to examine the link between the coronavirus and humans. Observation and analysis of the activities on Facebook illustrate the shifting attitudes of people towards politics, disease, and the body. In this context, activities refers to the interaction between various users on Facebook engaging in discussions and debates pertaining to the present pandemic and the responses it is eliciting. For this purpose, posts and comments related to the government’s achievements/failure from January 2020 to December 2021 posted on the public pages MyGovIndia, Bhartiya Janata Party, and Indian National Congress were analysed using a passive analysis method, defined as follows: “Passive analysis on Facebook involves the study of information patterns observed on Facebook or the interactions between users in existing Facebook groups” (Franz et al. 2019). A content analysis of various posts connected to keywords search was also undertaken. The keywords searched

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were “COVID-19 India,” “Covid deaths in India,” and “Covid dead bodies floating in river in India.” Social media platforms have become an extension of our thoughts, beliefs, ideas, and self-representation (Thomas 2016). Interactions on social media platforms such as Facebook are based on systems of networks that interconnect people (Saxton and Wang 2014). Social media platforms act as the space which brings together and creates overlapping patterns of creation and consumption of data. During the pandemic the number of Facebook users in India increased to 433.75 million in 2021 from 288.99 million in 2019 (Keelery 2021). This rise in the user base can partly be attributed to the paradigm shift in personal and professional interaction because of the lockdowns imposed across the globe to contain the spread of the coronavirus. Gilles Deleuze and Félix Guattari’s concept of assemblages and Bruno Latour’s Actor-Network Theory can be brought into dialogue with health humanities to offer new perspectives on the study of diseases and their socio-political impact. The development of health humanities is based on interdisciplinarity and the interconnectedness of various elements which are encountered globally on a day-to-day basis (Crawford 2020).

Theoretical Discussion Health humanities is a system of networks comprising health and well-­ being in relation to the social, political, geographical, and economic conditions of human society. The term health has various connotations. The World Health Organization defines health as “a state of complete physical mental and social wellbeing and not merely the absence of disease or infirmity” (Sartorius 2006, 662). This perception of health as a unit formed by multiple aspects has gradually been gathering recognition. From the binary of the healthy body and the diseased body to the concept of well-­ being, the concept of health has traversed through myriad gazes and attitudes (Sartorius 2006; Svalastog et  al. 2017). The field of the health humanities has grown rapidly from 2007 onwards (Crawford et al. 2010; Crawford 2020). The health humanities enable the study of sociological and anthropological perception of disease as well as within the humanities and arts. Paul Crawford notes that the “health humanities has moved beyond a predominating concern with training health professionals through the arts and humanities, and a privileging of a medical, biomedical, or scientific frame or lens above that of the expertise of the public,

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non-medical, or non-science contributions and challenges mechanistic or reductive routes to “injecting the arts and humanities as a kind of treatment” (Crawford 2020, 3). In relation to Latour’s Actor-Network Theory, the health humanities can be understood in terms of connections and networks due to its interdisciplinary nature. A qualitative analysis of human behaviour with respect to health and disease alongside the clinical and quantitative analysis is a major focus of the health humanities (Crawford 2020, 3). Beginning from the earliest days of the distinction between the normal and the abnormal, the study of disease has transformed significantly (Svalastog et al. 2017). The necessity of compulsory confinement to protect the society from madness has travelled through the ages to reach the present day of the COVID-19 crisis and the resulting isolation on a global scale to fight against the spread of coronavirus. Like the rhizome structure propounded by Deleuze and Guattari, the health humanities do not have a focal point. Each element of human life is equally essential in understanding health and human perception of attitudes towards diseases. Moving beyond the clinical boundary, it encompasses the promotion of health and associated activism for the same. The health humanities are no longer restricted to the application of humanities in the field of health care and healing, but it ventures out to a critical understanding of the same. Recent posthuman trends have displaced the existing binaries between the human and the non-human. The health humanities further strengthen the lack of binaries through the understanding of the human body as an “interspecies intermingling” (Venkatesan 2021, 3) which houses human as well non-human elements such as bacteria and virus. As Nick J. Fox notes, “Health and illness are phenomena that are material, experiential and culturally contextual: diseases affect organs and cells, but also influence experience and identity, and manifest within contexts and across populations” (2011, 359). Therefore, health and its various coexisting components can be termed as an assemblage. The genealogy of the concept of assemblage can be traced back to Carl Jung’s use of the term rhizome. In Memories, Dreams, Reflections, Jung contextualizes the rhizome within human life, noting: Life has always seemed to me like a plant that lives on its rhizome. Its true life is invisible, hidden in the rhizome. The part that appears above the ground lasts only a single summer. Then it withers away–an ephemeral apparition. When we think of the unending growth and decay of life and

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c­ ivilizations, we cannot escape the impression of absolute nullity. Yet I have never lost the sense of something that lives and endures beneath the eternal flux. What we see is blossom, which passes. The rhizome remains. (Jung 1989, 2)

Building on Jung’s idea, Deleuze and Guattari expand on the significance of the rhizome as a system of networks characterized by a sense of multiplicity and interchangeability. Deleuze and Guattari referred to society as a system of rhizomes as a system of interconnected networks with neither a beginning nor an ending: A rhizome as subterranean stem is different from roots and radicles. Bulbs and tubers are rhizomes. Plants with roots or radicles may be rhizomorphic in other respects altogether: the question is whether plant life in its specificity is not entirely rhizomatic. Even some animals are, in their pack form. Rats are rhizomes. Burrows are too, in all their functions of shelter, supply, movement, evasion, and breakout. (Deleuze Giles and Guattari 1987, 6–7)

Though written before the development of new media technologies, Deleuze and Guattari’s concept of the rhizome is relevant, as they discuss how the various components of a machine are brought together and “reshaped by a sort of dynamism” (Savat 2009, 3). The internet is thus a rhizome, as it is non-hierarchical and democratic without a specific centre. The internet is “an indeterminate and potentially unlimited number of interconnected nodes [that] communicate with no central point of control” (Hardt and Negri 2000, 299). The concept of the rhizome can be linked to Bruno Latour’s Actor-­ Network Theory. Latour discusses a network structure in which each element influences and affects all other elements in the system. Within this system there is no superior and primary position. Instead, all elements of nature and society are equally essential. The concept of the rhizome and the Actor-Network Theory can be used to decentralize the position of the human species as the primary reason behind climate change. Human inventions in the industrial age gradually brought about climate change, and the change in nature affect the manner through which the human species interacts with its surroundings. The Actor-Network Theory considers the human and the non-human at par with each other. It negates the presence of a hierarchical order. To define the relationship between the human and the non-human, Latour uses the terms actor and actant, which exists

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in a set of complex networks (Latour 2005). The idea of technological determinism has often been used to explain human advancements. The best example of this interdependency between the human and the non-­ human is the invention of air conditioning systems. Rising temperatures paved the way for the invention of air conditioning. With the introduction of air conditioners, the neighbourhood culture of interacting with each other outdoors was substituted by private indoor spaces: “Air conditioning has seduced families into retreating into houses with closed doors and shut windows, reducing the commonality of neighbourhood life and all but obsoleting the front-porch society whose open casual folkways were an appealing hallmark of a sweatier America” (Arsenault 1984, 623). The idea of interconnectedness can also be depicted using Giorgio Agamben’s concepts of bios and zoe and is linked to pandemics and death. The term bios refers to a qualified life inclusive of sovereignty and personhood. The term zoe on the other hand refers to “bare life,” which is equivalent to a non-human (Agamben 2005, 4–5). In a state of crisis, the bios, or a life that is individual and sovereign, is no longer essential. Agamben hinges his theory of sovereign power on the distinction between bios and zoe. Sovereign power, argues Agamben, is founded upon its ability to implement a “state of exception” for any subject it deems errant. This subject, deprived of all political and legal rights, is reduced to “homo-sacer who may be killed and yet not sacrificed … who anyone can kill without committing homicide” (Agamben 1998, 15). The fulcrum of sovereignty is thus a paradox, for while it drafts, administers, and adjudicates the law, it situates itself outside the law, granting itself absolute power over life and death. Piled up and burned dead bodies negating human agency has been revisited repeatedly, from the plague of Justinian to the Black Death in the Middle Ages to the Great Plague of London during the seventeenth century, and from the cholera epidemic to the present coronavirus pandemic (The National Archives 2021). Death as a phenomenon is entangled with the concept of the dead body. Death and dead bodies should be understood as separate entities that are also interconnected. The politics of dead bodies is termed as necropolitics, whereas the politics of death is referred to as thanatopolitics (Troyer 2020). To manage mass death, bodies must be destroyed. Burning countless bodies in a pit or a pyre is the state’s will to manage death. Infectious and diseased bodies had to be removed from within the state to control the spread of disease and death (Troyer 2020, 130–139). The dead bodies thus exceed their appropriation by the power mechanisms of

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the state, persisting in their materiality. Such a perseverance engenders new modes of resistance not immediately foreseen by the system. This happens through the proliferation of images of dead bodies through the interconnected webs of social network. Following Guy Debord and Jean Baudrillard, it may be argued that these images run the risk of being spectacularized as mere simulation, as pixels made bereft of their sombre humanitarian and political dimensions. This happens often due to the oversaturation of these images on the digital space, dispersed en masse without paying much heed to the particularities of each image (Stratton 2020, 3–24). Technology, however, as Tauel Harper points out, is “latent with the possibility of developing a new mode of techno-politics capable of redressing the instrumental abuse of modern politics” (Harper 2009, 125). Images and video clips on the Facebook platform depicting the horrors of the second wave of COVID-19 in March 2021 in India brought about an affective response that exceeds hegemonic neutralization and containment strategies. This affective response in the form of comments, likes, emoticons, and shares creates an intermeshed network of views and attitudes. Social media, as a system of networks or an assemblage, thus has the potential to function as—to use Deleuze and Guattari’s terminology in A Thousand Plateaus—lines of flight. Lines of flight are areas within assemblages which contain the possibility of transgressing the power mechanisms which perpetually act upon it. The characteristic attribute of a line of flight is that it eludes capture and propels itself towards new coordinates of becoming that nurture multiple rhizomatic connections, many possible fragments of many possible realities. Therefore, “Technology is always already an assemblage with the potential of emancipation and capture” (Harper 2009, 127). In the context of Indians and the coronavirus crisis– and the ensuing crisis of governance–the plethora of images, memes, parodies, and video clips formulated new modes of resistance to hegemonic dominance. A single post lead to multiple other posts and comments with no central connective node of narrative. As a result, the bios loses his/her sovereignty to become zoe. According to Foucault, “Death is beyond the reach of power, and power has a grip on it only in general, overall, or statistical terms. Power has no control over death, but it can control mortality” (Troyer 2020, 131). A state’s health policies are targeted towards controlling the bare bodies stripped of their political power and personhood.

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Facebook and the Politicization of COVID-19 Patient Bodies: A Case Study The health humanities have become an integral part of our consideration of the politization of COVID-19 patient bodies. A health humanities approach allows the changing attitude towards the concept of health within the Indian context specifically, and the world in the larger context, to be understood. Seeing health as a series of networks that is understood through Deleuze and Guattari’s notion of the rhizome and Latour’s Actor-Network Theory allows for an understanding of the social world as a type of social network that is reflected in social media such as Facebook. Agamben’s conception of bios to see how life is lived and zoe as the biological dimension of existence only serves as a useful consideration to inform the study the political narrative on Facebook in relation to the COVID-19 crisis. The social, the political, the economical, the psychological, and society itself, come together to redefine the idea of health in the present crisis. The Indian government’s policies during an emergency normalize certain actions, which in other times could be considered as an offence, and the government and opposition creates a narrative and counter narrative of politicizing death and disease. To explore these issues, we conducted a study using the following questionnaire and collected responses between 25 October 2021 and 4 November 2021: Facebook Study Data, India Questionnaire: 1. Email: 2. Gender: Male, Female, Others 3. Age: 4. Education qualification: Graduate, Postgraduate, PhD, Postdoctorate, Other 5. Do you engage in political discussion on Facebook? Yes, No 6. Do you think one should share political content on Facebook? Yes, No 7. How has your pattern of using Facebook changed in the last one year? Check all that apply: –– Increased the number of hours spent on Facebook –– More content about COVID-19

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–– Shared more personal content –– Engaged in more political discussion in comparison to the pre-­ COVID period –– Using Facebook to stay connected to friends and family during lockdown 8. Do you follow any political parties/politician’s Facebook profile? Yes, No 9. Do you think Facebook is an important platform for citizens’ engagement with public issues? Yes, No 10. I generally post contents criticizing the Indian government’s role in dealing with the COVID-19 crisis: Mark one oval: 1 = Never, 2, 3, 4, 5 = Very often 11. I generally post contents supporting the Indian government’s role in dealing with the COVID-19 crisis: Mark one oval: 1 = Never, 2, 3, 4, 5 = Very often A total of 110 data sets were acquired. The data was collected using the snowball sampling method, defined as follows: a snowball sample “is created through a series of referrals that are made within a circle of people who know one another” (Balakrishnan et  al. 2006, 7818). Responders were between the ages of 5 and 64, but the majority of them (55%) were between the ages of 15 and 24. Of this subgroup of responders (see Fig.  11.1), 52% stated they do not engage in political discussions on Facebook, and yet 42% believed that political thoughts should be shared on Facebook (see Fig. 11.2). Most Facebook users access content without responding to posts, but use emoticons or the like button, which is also considered to be a response. This shows that political discussion need not only happen in overt ways. In addition to the questionnaire, a textual analysis of the individual public Facebook pages MyGovIndia, Bhartiya Janata Party, Narendra Modi, and Indian National Congress was conducted using a passive analysis method, as defined earlier, to understand the kind of interactions taking place among Facebook users. The textual analysis focused on posts and comments from January 2020 to December 2021. We were interested to

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Total 3%

1%

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Fig. 11.1  Facebook data demographics

Total 42

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Fig. 11.2  Facebook data: political thoughts

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examine politics understood as a site of struggle and opposition (Heywood 2013, 2). Political practices focused on conflict between people in power and people out of power. The various discussions on Facebook centred around the COVID-19 crisis in India and focused on the death of patients. In this respect the body is not restricted to the physical human body alone, but extends to medical facilities, such as the availability of hospital beds, availability of oxygen and the availability of vaccine. The focus of the criticism of the Indian government is the images of crematoria where the dead bodies of COVID-19 patients were burned. The other aspect which is commonly discussed with respect to the political sphere is unavailability of oxygen (Frayer 2021). The dead bodies resulting from the COVID-19 crisis became a site for political discourse, and death itself became a political tool. The narrative created around the bodies buried along the banks of River Ganga in Pragyaraj or some of which floated in the river (Sharma 2021) or were cremated in a single pyre was entirely a narrative of politics. The political dialogue on Facebook relevant through the textual analysis transformed the bare bodies into bios. Giorgio Agamben’s concept of bios/zoe becomes essential to understand the significance of dead bodies in enacting a zone of politics. The government is no longer focused on bios, which refers to the way of life. Instead, the zoe, the biological process of life, becomes more essential. As such, individual well-being takes a back seat in the government’s policymaking. However, the images of dead bodies wrapped in Personal Protective Equipment (PPE) kits floating in River Ganga was captured by leading national newspapers and shared on various social media platforms, including Facebook, in 2021. This brought forth a volley of criticism for the government’s failure to manage the COVID-19 situation. These criticisms, which are posted as comments to posts on Facebook, are countered by the Indian Prime Minister Narendra Modi’s government with statistics. Since in a state of crisis the individual well-being is no longer the focus, and instead it is the zoe, or biological or bare life, which becomes essential, the statistic denoting the number of lives saved is more acceptable than noting the number of deaths. The contaminated dead bodies become the Homo Sacer of the pandemic. For example, a post on the Bhartiya Janata Party (the leading political party forming the government in India) Facebook page portrays a graph comparing the number of days required to administer 1 million vaccine doses. In response several Facebook users comment on how the comparison made only includes countries with much lesser populations than India. Through the narrative of political

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discourse, the bodies are transformed into silent agents of power politics and thus lose their individual humanity. The initial images flooding across the Facebook platform related to the crucial state of the migrant workers in India. These images, capturing the plight of the migrant labourers in India soon after a total lockdown was declared on May 2020, became viral on Facebook and other social media platforms. The rootless population, walking vast distances, was the worst hit. Being migrants, the responsibility for their well-being was complicated due to their lack of belonging to any particular state of India. Images, photos, videos, and comments were replete on the Facebook pages. The necropolitics based around the coronavirus thus brought within its grip both the underprivileged and the privileged. The prevalent necropolitics practised in Indian society has been associated with the strict caste system. The idea of untouchability has always been connected to the Dalits, a term used to denote the class of people involved in menial jobs like a sweeper, and people concerned with precarious functions such as cleaning drainage systems, cremating bodies and similar. However, with the advent of the second wave of COVID-19, beginning in the middle of March 2020 (Kar et  al. 2021), the strict demarcation between castes became irrelevant. The COVID-19 virus functioned as an equalizer in the context of the idea of stigma and untouchability. The stigmatized bodies were no longer restricted within a particular class or caste. All COVID-19 patients were perceived as untouchables due to the highly infectious nature of the virus. COVID-19, spread across all boundaries irrespective of class, caste, race, and ethnicity. In a comment on a Facebook post on the MyGovIndia page a user mentions: “It is surprising to think that the Untouchables are now maintaining social distancing from the Touchable. How great the time! Still people of higher castes fail to understand that all human beings are same irrespective of their religion, castes races etc.” (MyGovIndia, Facebook user identity anonymized). A reading of the MyGovIndia page posts on Facebook relating to the government’s success in administering vaccinations shows both positive and negative responses. The response in the comments section to one such post mentions that “Modi ji is the Prime Minister of our country, who, by putting his life and his life for our country, also wishes for the efficient ahead of his India. Such are they open or open, give that stone to the heart, I wish you the very best that you will make a good decision very soon and will try right and do the most good of purity in India. Thank you!” A contrasting poster states, “you are really funny. But we are having enough of jokers clowns

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and buffoons running our country. Even Kapil Sharma show also lost its credibility” (MyGovIndia, Facebook user identities anonymized) In response to the Indian National Congress (the leading opposition party of India) Facebook page sharing posts pointing to the inefficiency of the Modi government, supporters of Narendra Modi make comments such as “Congress is spreading fake news” (Facebook user identity anonymized). The conversations taking place on these Facebook pages can be perceived to be a point of political conflict between the state and its individuals. This political debate on Facebook represents the dead either as bios or as zoe depending on whether the government is acquiring support or criticism. According to Agamben, in a state of emergency, the government is more concerned with the zoe or the number of lives saved, rather than bios or the well-being of the individual citizens. The Indian government through its Facebook page, MyGovIndia, reiterates the numbers of vaccine doses implemented and the number of people recovered, as the dead become the Homer sacer, who by virtue of being contaminated are sacrificed for the well-being of the community at large. Therefore, the criticisms of the government become redundant in a “state of exception” (Agamben 2005). Within this state of exception, the death of the affected people is normalized along with the constant surveillance. Joel Vos quotes Agamben: There have been more serious epidemics in the past, but no one ever thought of declaring a state of emergency like today, one that forbids us even to move. Men have become so used to living in conditions of permanent crisis and emergency that they don’t seem to notice that their lives have been reduced to a purely biological condition, one that has lost not only any social and political dimension, but even any compassionate and emotional one. (Vos 2021, 6)

Conclusion This chapter mainly focuses on the role of the virus in redirecting the understanding of political narrative along with the changing attitude towards health, disease, and the body. The mass disposal of the dead bodies in contrast to the number of people who are saved reduces the idea of life into that of survival alone. The importance of this chapter lies in the fact that it provides an understanding of the effect of the COVID-19 virus

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to influence our gaze towards health and disease. This chapter also shows how communication and interaction, along with the structure of society, become interconnected. Health can no longer be studied through the medical gaze alone. Instead, a more robust and holistic approach towards health is of greater significance.

References Agamben, Giorgio. 1998. Homo Sacer. Stanford University Press. ———. 2005. State of Exception. Translated by Kevin Attell. Chicago: University of Chicago Press. Anonymous. 2020. Indian National Congress (INC) Facebook. January. Accessed 30 December 2021. Arsenault, Raymond. 1984. The End of the Long Hot Summer: The Air Conditioner and Southern Culture. The Journal of Southern History: 547–628. Balakrishnan, N., Campbell Read, Brani Vidakovic, and Norman L.  Johnson. 2006. Encyclopedia of Statistical Sciences. Vol. 1. New Jersey: Wiley. Bocetta, Sam. n.d. Coronavirus and the Right to Online Political Participation. Accessed 6 November 2021. https://www.openglobalrights.org/coronavirus­and-­the-­right-­to-­online-­political-­participation/ Chistyakova, Marina. 2021. Bio-Art Between Bios and Zoe. November 03. https:// knepublishing.com/index.php/KnE-­Social/article/view/6356/11745 Crawford, Paul. 2020. In The Routledge Companion to Health Humanities, ed. Brian Brown and Andrea Charise Paul Crawford. New York: Routledge. Crawford, Paul, Brian Brown, Victoria Tischler, and Charley Baker. 2010. Health Humanities: The Future of Medical Humanities? Mental Health Review Journal 15 (3): 4–10. Facebook, Bhartiya Janata Party (BJP). 2021. Bhartiya Janata Party (BJP) Facebook. Accessed 1 January 2022. https://www.facebook.com/ page/121439954563203/search/?q=covid%2019%20vaccine Fox, Nick J. 2011. The Ill-health Assemblage: Beyond the Body-with-organs. Health Sociology Review 20: 359–371. https://doi.org/10.5172/ hesr.2011.20.4.359. Franz, Daschel, Heather Elizabeth Marsh, Jason I. Chen, and Alan R. Teo. 2019. Using Facebook for Qualitative Research: A Brief Primer. Journal of Medical Internet Research 21 (8): e13544. Accessed 24 December 2021. https://doi. org/10.2196/13544. Frayer, Lauren. 2021. 'This Government Has Failed Us': Anger Rises in India Over PM Modi’s COVID Response. May 11. Accessed 6 November 2021. https:// www.npr.org/2021/05/11/995446333/this-­g overnment-­h as-­f ailed-­u s-­ anger-­rises-­in-­india-­over-­pm-­modis-­covid-­response

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Ghaffary, Shirin. 2021. Vox. May 1. Accessed 6 November 2021. https://www. vox.com/recode/22410931/india-­pandemic-­facebook-­twitter-­free-­speech-­ modi-­covid-­19-­censorship-­free-­speech-­takedown Giles, Deleuze, and Felix Guattari. 1987. A Thousand Plateaus. Minneapolis: University of Minnesota Press. Hardt, Michael, and Antonio Negri. 2000. Postmodernization, or the Informatization of Production. In Empire, 280–303. Cambridge, MA: Harvard University Press. Harper, Tauel. 2009. Smash the Strata! A Program for Technopolitical Revolution. In Deleuze and New Technology, by Mark Poster and David Savat, 125-142. Edinburgh: Edinburgh University Press. Heywood, Andrew. 2013. Politics. Palgrave Macmillan. Jung, Carl G. 1989. In Memories, Dreams, Reflections, ed. Aniela Jaffe . New York: Vintage Books.Translated by Richard and Clara Winston Kar, Sujita Kumar, Ramdas Ransing, S. M Yasir Arafat, and Vikas Menon. 2021. Second Wave of COVID-19 Pandemic in India: Barriers to Effective Governmental Response. EClinicalMedicine. Accessed 21 January 2022. https://doi.org/10.1016/j.eclinm.2021.100915 Keelery, Sandhya. 2021. Number of Facebook Users in India from 2017 to 2020, with Estimates Until 2040. August 17. Accessed 24 December 2021. https:// www.statista.com/statistics/304827/number-­of-­facebook-­users-­in-­india/ Latour, Bruno. 2005. Reassembling the Social: An Introduction to Actor-Network-­ Theory. New York: Oxford University Press. Lindgren, Simon. 2017. Digital Media & Society. London: Sage. Lipscy, Phillip Y. 2020. COVID-19 and the Politics of Crisis. International Organization (Cambridge University Press) 74 (51): E98–E127. Accessed 6 December 2021. https://doi.org/10.1017/S0020818320000375. McMillen, Christian W. 2016. Pandemics: A Very Short Introduction. New York: Oxford University Press. ———. n.d. MyGovIndia|Facebook. Accessed December 2021a, 2021. https:// www.facebook.com/page/775974615850063/search/?q=covid%2019%20 vaccine. ———. “The Pandemic Democratizes the Power to Kill.” An interview|European Journal of Psychoanalysis. Accessed December 27th, 2021b. https://www. journal-­psychoanalysis.eu/the-­pandemic-­democratizes-­the-­power-­to-­kill-­an­intyerview/ Onyeaka, Helen, Anumudu K.  Christian, Al-Sharify T.  Zainab, Egele-Godswill Esther, and Mbaegbu Paul. 2021. COVID-19 Pandemic: A Review of the Global Lockdown and Its Far-reaching Effects. Science Progress 104 (2): 00368504211019854. Accessed 31 December 2021. https://doi.org/ 10.1177/00368504211019854.

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Pandhi, Nikhil. 2021. COVID-19 and India’s New Viral Necropolitics. May 25. Accessed 6 November 2021. https://thewire.in/rights/covid-­19-­india-­ necropolitics-­caste Pele, Antonio. 2020. Achille Mbembe: Necropolitics. March 2. Accessed 6 November 2021. https://criticallegalthinking.com/2020/03/02/achille-­mbembe-­ necropolitics/ Piret, Jocelyne, and Guy Boivin. 2021. Pandemics Throughout History. Frontiers in Microbiology 11: 631736. Accessed 31 December 2021. https://doi. org/10.3389/fmicb.2020.631736. Roy, Arundhati. 2020. Arundhati Roy: “The Pandemic is a Portal.” April 3. Accessed 6 November 2021. https://www.ft.com/content/10d8f5e8-­74eb­11ea-­95fe-­fcd274e920ca Sartorius, Norman. 2006. The Meanings of Health and its Promotion. Croatian Medical Journal 47 (4): 662–664. Accessed 22 November 2021. https:// www.ncbi.nlm.nih.gov/pmc/articles/PMC2080455/. Savat, David. 2009. In Deleuze and New Technologies, ed. Mark Poster and David Savat. Edinburgh: Edinburgh University Press. Saxton, Gregory D., and Lili Wang. 2014. The Social Network Effect: The Determinants of Giving Through Social Media. Nonprofit and Voluntary Sector Quarterly 43 (5): 850–868. https://doi.org/10.1177/0899764013485159. Sharma, Harikishan. 2021. In Covid-19 Second Wave, River was Dumping Ground for Dead, Admits Ganga Mission Chief. December 24. Accessed 29 December 2021. https://indianexpress.com/article/india/in-­2nd-­covid-­wave-­river-­was-­ dumping-­ground-­for-­dead-­admits-­ganga-­mission-­chief-­7687762/ Stratton, Jon. 2020. Death and the Spectacle in Television and Social Media. Television & New Media 21 (1): 3–24. Accessed 28 December 2021. https:// doi.org/10.1177/1527476418810547. ———. 2021. The National Archives. August 17. Accessed 23 December 2021. https://www.nationalarchives.gov.uk/education/resources/great-­plague/ Svalastog, Anna Lydia, Doncho Donev, Nina Jahren Kristoffersen, and Srećko Gajović. 2017. Concepts and Definitions of Health and Health-Related Values in the Knowledge Landscapes of the Digital Society. Croatian Medical Journal 58 (6): 431–435. https://doi.org/10.3325/cmj.2017.58.431. The National Archives. 2021. The National Archives  - Homepage. August 17. Accessed 2 January 2022. https://www.nationalarchives.gov.uk/legal/ copyright/ Thomas, Sherry. 2016. A Virtual Life  - How Social Media Changes Our Perceptions|TCSPP. October 7. Accessed 31 December 2021. https://www. thechicagoschool.edu/insight/from-­the-­magazine/a-­virtual-­life/ Troyer, John. 2020. Technologies of the Human Corpse. Cambridge: The MIT Press.

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Venkatesan, Sathyaraj. 2021. Sites, Contexts and Beyond: Mapping Health Humanities. Media Watch 12 (1): 3–6. Accessed 29 November 2021. https:// doi.org/10.15655/mw/2021/v12i1/205453. Vos, Joel. 2021. The Psychology of Covid-19: Building Resilience to Future Pandemics. London: Sage Publications. Rimi Nandy  is an Assistant Professor of English at Adamas University, India, in the Department of Language and Literature (School of Liberal Arts and Culture Studies). She is also pursuing PhD from the School of Media, Communication and Culture, Jadavpur University, India. Ms. Nandy has a Master’s degree in English and a PG diploma in Digital Humanities and Culture Studies. Her research areas include digital humanities, narratology, social media studies, posthumanism, and Japanese studies. She has recently got a book chapter published in the edited volume Storytelling in Luxury Fashion.  Agnibha Banerjee  is currently a PhD fellow at Rice University. Earlier to this, he worked as an assistant professor in the Department of English Language and Literature, Adamas University, India. His research and teaching interests include utopian/dystopian studies, posthumanism, Marxism, and critical race theory. His most recent essay on Yoko Ogawa’s The Memory Police was published in the Fall 2021 issue of the South Central Review. He has also presented papers at several international conferences, including the Pacific Ancient Modern Language Association (PAMLA), the Southeast Popular/American Literature Association (SWPACA), the South Atlantic Modern Language Association (SAMLA), and the London Centre for Interdisciplinary Research (LCIR).  Santosh Kumar is the Dean and Professor of Liberal Studies at Adamas University, India. A Commonwealth Fellow, he was awarded a Doctorate in Politics from Jawaharlal Nehru University (JNU), New Delhi, and Department of Politics, University of Glasgow. He was on intermittent employment with the World Bank during 2004–2007. He has contributions in several books, refereed papers published in reputed journals, and research and field action project reports to his credit. He is on the editorial board of three international journals and on the research advisory board of several academic institutions and professional bodies.

CHAPTER 12

On the Use of Encapsulation, Parity, and Visual Storytelling in Graphic Medicine Spencer Barnes

Introduction This chapter discusses how visual storytelling and social media platforms may be used for the presentation of experiential health information because “for a good proportion of the public … social networking sites are the first resource to find general and health-related information” (Farsi et al. 2022: 4). Experiential health information consists of the facts, circumstances, and outcomes concerning a health-related event that a person encounters or undergoes. It covers the context and nuance of such an experience as well. Imagine a breast cancer survivor that has recently completed her first full year of remission. Her accounts of her initial diagnosis and consultation with her doctor, treatment regimen, and her subsequent recovery along with her interpretations of these events can be considered pieces of experiential health information about her ordeal. The articulation and

S. Barnes (*) Hussman School of Journalism and Media, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_12

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dissemination of this type of information is facilitated by the health humanities, which is a field that encompasses interdisciplinary strategies for informing, promoting, and advancing health and well-being as well as any related inquiries (Bleakley 2019; Crawford 2020). The health humanities serve as a resource for situating and translating experiences; fostering awareness, social support, and resilience; and engaging audiences in critical reflection and advocacy. Storytelling is one of the solutions employed by the health humanities to attribute meaning to experiential health information (Bleakley et al. 2020). A narrative can organize how experiential health information is communicated and it can add significance to the information. Many social media platforms have features that invite storytelling and allow multiple forms of media to be integrated into a narrative to enhance its resonance. These capabilities may complement endeavours related to the health humanities. For example, Pangborn et al. (2021) found that social media platforms offered frontline healthcare workers the opportunity to reveal the impact of their experiences associated with COVID-19 and “social media storytelling enabled them to respond to the traumas they experienced: putting themselves in direct contact with a vicious virus, witnessing immense suffering and death, putting up with political and administrative moves that demeaned and intensified their work, and enduring contentious dialogues for the sake of saving others from becoming their next patient” (9). Yi-Frazier et al. (2015) explored how Instagram and visual storytelling could be used to enact health promotion strategies for adolescents living with type 1 diabetes and encourage positive health behaviours. Mercier et al. (2020) examined how women who experienced pregnancy loss used Instagram to disclose information about their miscarriage, seek social support, and build community around the experience. These cases (and many others) demonstrate the potential of expressing experiential health information using visual storytelling and social media platforms, and this chapter attempts to expand upon these efforts and address the factors that influence the design, production, and effectiveness of stories that convey experiential health information.

Social Media and Storytelling Recent advances in social media technologies have made it possible for people to engage in innovative storytelling. Platforms such as Facebook, Snapchat, and Instagram continue to introduce features that offer their

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users the opportunity to document, share, and curate life moments. For example, live video broadcasting enables users to publicize and present an event to other users (i.e. viewers) in an immediate and immersive manner, and it permits viewers to virtually experience the event or activity as it happens (Haimson and Tang, 2017; Sjöblom et al. 2019). A news feed (or stream) is a feature that is frequently accessed and reviewed throughout the day by users because it allows them to remain up to date and engaged with current affairs and the activities of people within their networks (Pew Research Center 2021). Carr and Hayes (2015) as well as Bayer et  al. (2016) described social media as an assortment of internet-based tools that are housed on a platform that supports computer-mediated communication and interaction between an individual and vast audiences. Generally, a platform is composed of an interface and sets of discrete features, where a feature is a property or tool that has a function(s) that users can employ to complete tasks (Bonina et al. 2021; de Reuver et al. 2018; Gawer 2014). Core features are the fundamental tools upon which the platform is based and peripheral features are tools that compliment core features and extend their functionality. An interface facilitates and governs interactions between the platform’s core and peripheral features, displays the communication mechanisms that exist between the user and a platform’s features (e.g. a window, menu, etc.), and an interface supports the direct manipulation of features by a user (Dudley and Kristensson 2018; de Souza Lima and von Wangenheim 2022; Sakal 2010). This architecture serves as the framework that unites, structures, and coordinates the activities of the components of the platform and it allows the system to remain stable as well as modular (Baldwin et al. 2009). Consider Twitter. One of the platform’s core or primary features is the production and posting of a tweet (i.e. a short and succinct message). However, Twitter Blue is a bundle of peripheral features (subscription-based) that now accompany the platform (e.g. “Undo Tweet,” etc.) and Twitter’s interface mediates how users access and implement its Twitter Blue features (Beykpour and Gupta 2021). Rhee et al. (2021) suggested that the essence of a social media platform is characterized by what users perceive as the system’s defining feature(s) and that platform essence may inform how features are utilized. According to Davis and Chouinard (2016), an affordance is the “range of functions and constraints” (241) supported by a feature. The utility of an affordance depends on several factors including the purpose of an activity and the context in which the activity will occur, how the affordance compels a user to complete a task in a certain way, and the user’s

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ability to recognize the affordance and deploy it. People frequently leverage the affordances associated with a platform’s essence. For example, it is common knowledge that short videos can be recorded and posted using TikTok. However, savvy users are able to demonstrate an awareness of the affordances of the platform’s video editing feature and determine the timing, duration, and placement of text within a TikTok video. Storytelling on social media platforms concerns the production and distribution of small stories which are narratives that recount events, impose temporal and spatial order upon the recounted events, and organize them into a moment (Georgalou 2015; Georgakopoulou 2015, 2020, 2021; Page 2015). Small stories are short in length and sometimes fragmentary because the moments that they describe are ongoing and incomplete, they “afford opportunities to share life in a miniaturized form” (Georgakopoulou 2017: 269), and they present a profile of one’s activities and experiences. A small story can be formatted as a simple series of message postings (e.g. a set of tweets) or as something much more complex and immersive. Platforms such as Google’s Accelerated Mobile Pages (AMP) web stories, Snapchat, and Instagram have all released features that allow users to articulate and deliver small stories that are organized as a coherent package of media elements (Bayer et  al. 2016; Jun et al. 2019; Leaver et al. 2020; Navío-Navarro and González-Díez 2021; Vázquez-Herrero et  al. 2019; Villaespesa and Wowkowych 2020). This approach to storytelling is known as visual storytelling and it communicates the context and description of an activity, sequence of events, or complex scenario. Visual storytelling allows a narrative to unfold by capitalizing on the distinct capabilities of various media elements to enrich and support the narrative (Klanten et  al. 2011). Photographs can provide a visual representation of a small story’s setting, short videos are able to portray motion and action, and graphics (static and animated) can depict phenomena that are too complicated to be documented by other types of media elements (Hernandez and Rue 2016). Small stories that apply visual storytelling are immersive and tappable, meaning that they provide users with greater control over the viewing experience because scrolling is not required to advance through the story (Forrester Research, Inc. 2019). Small stories crafted with visual storytelling can enhance the presentation of a wide range of topics. Several media companies and news organizations have utilized AMP to produce web stories that concentrate on health-related topics and the “First Pill to Fight the Worst COVID-19 Cases” by USA Today (2021) serves as an example. The story is narrated

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by patient safety enterprise reporter Karen Weintraub and it describes the research and development of Molnupiravir, a COVID-19 antiviral treatment. The story employs a carousel which enables viewers to advance through the narrative by navigating between sequential screens (or panels) that package multiple media elements and other pieces of narrative content. These panels are arranged and displayed horizontally. The story informs viewers about Molnupiravir’s ability to promote patient recovery by disrupting the coronavirus replication cycle. BBC News Labs, a technology incubation unit of BBC News, demonstrated the application of visual storytelling by developing a web application that generates small stories about health-related topics from full-length journalistic reports such as full-length feature stories (Molumby et al. 2020; Oduyemi 2020). All of these small stories use a carousel that displays panels containing both static graphics and text. BBC New Labs found that this form of visual storytelling was appealing, emotive, and easily comprehended by social media users within the age range of 18 to 35 years old. These solutions imply that health-related information can be effectively communicated and explained on social media platforms using visual storytelling. However, many aspects of small stories deserve further exploration such as how media elements are packaged within a story, how they support the story, and how visual storytelling in this context facilitates certain forms of health communication such as graphic medicine. The following sections address these matters.

Health Humanities and Graphic Medicine The health humanities explore how meaning can be attributed to health-­ related experiences and how healthcare practitioners (i.e. clinicians and non-clinicians), interventions, and other resources contribute to the development, maintenance, and advancement of individual well-being as well as global health and the sociocultural systems upon which health depends (Jones et al. 2017). The field emphasizes various approaches to storytelling as a means of contextualizing, documenting, and reasoning about health-related experiences and interactions (Crawford 2020; Crawford et al. 2010; Lewis 2021; Sklar 2017; Stewart and Swain 2016). Testimonials, poetry and spoken word performances, and paintings about living with and surviving an ailment serve as examples of how the health humanities have been used to engage people, facilitate sensemaking, advocate for positive health outcomes, and inform policy. Graphic medicine is

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an approach that is capable of conveying the meaningfulness of a person’s experiences with an ailment, injury, or illness. Graphic medicine utilizes combinations of images and text as well as “sequential (but not always narratively linear) visual storytelling to share health-related experiences and information” (King 2017: 523) with audiences. The discourse associated with graphic medicine usually communicates an understanding of the context and expectancies related to a chronic or terminal illness, provides an account of a one’s experience coping with it, and describes the nature of clinical encounters and information exchange between medical professionals, patients, and caregivers (Green and Czerwiec 2016). For example, a person may produce a series of images with text captions that depict their daily experience of living with type 1 diabetes or a person may lay out and arrange several images with text dialogue in order to present their experience of recovering from a serious injury. Czerwiec et al. (2015) characterized graphic medicine as “the intersection of the medium of comics and the discourse of healthcare” (1) due to the origins of the approach and how it juxtaposes imagery and text in order to tell stories. The practices of pathography and narrative medicine have equally influenced the development and implementation of graphic medicine. A pathography is an autobiographical story of a patient’s (or caregiver’s) experience dealing with the course of an illness and its associated treatment, and it can be written with the intent to provide practical information to other people encountering similar circumstances, to address deficiencies in medical care, or to highlight larger contextual issues that are related to public health (Glazer 2015; Hawkins 1999). Graphic pathographies are pathographies that incorporate illustrations and other imagery to visually present stories about health-related experiences (Green and Myers 2010). Narrative medicine is the practice of efficient engagement with patients during clinical interactions where a doctor listens to “the narratives of the patient, grasp[s] and honor[s] their meanings” (Charon 2001: 1897). Narrative medicine seeks to gain insight into the patient’s experience with an injury or illness, and delineate an effective course of action or remedy for the patient based on their stories (Charon 2006). Graphic medicine combines many of the features of pathography and narrative medicine and utilizes visual narratives to tell stories that inform people about the impact of illness (or injury) on one’s quality of life as well as present directives pertaining to health experiences (e.g. promoting awareness of prevention and screenings, etc.; Venkatesan and Saji 2019).

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Graphic medicine has been applied in a variety of contexts. For example, Muzumdar and Pantaleo (2017) found that people viewed illustrated vaccination flyers as more appealing, engaging, and informative than traditional vaccination flyers that presented information as a checklist or a bulleted list of items. Hanson et al. (2017) used graphic medicine to provide emergency room post-discharge instructions to injured children and their caregivers regarding the children’s awareness of pain and the subsequent administration of pain medications. Dobbins (2016) documented her production of illustrated health campaigns about type 2 diabetes and its symptoms for underserved Portuguese and African-American communities. Leung et  al. (2017) determined that illustrated narratives were instrumental in promoting health eating behaviours among adolescents. Hourani et  al. (2017) described how they designed graphic novels (i.e. stories presented in a comic book format) that incorporated learning goals to prepare US servicemen and servicewomen for combat deployment and to teach them how to mitigate stress and monitor their mental health and the mental health of their fellow soldiers. Willis et  al. (2018a, 2018b) employed animation and motion comics to discuss the prevention of AIDS with susceptible populations and reduce the stigma surrounding STIs. Graphic medicine expresses a story through the use of a visual narrative where a visual narrative presents a series of sequential panels that each contain imagery and text related to different aspects of the story (Cohn 2013a, 2013b; Czerwiec and Callender 2020; Squier 2020). Fundamentally, each panel serves as a composition that frames a part of narrative’s action and provides information about the scene and/or characters of the story. In the case of graphic medicine, panels are typically static and only include illustrated images and text because the medium of comics is traditionally print-based. However, the panels of small stories that adopt visual storytelling are dynamic by virtue of each panel being digital and possessing the ability to incorporate multiple media elements (e.g. photographs, short videos, etc.). Let’s briefly return to the “First Pill to Fight the Worst COVID-19 Cases” by USA Today (2021). The small story’s second panel introduces Molnupiravir and the panel becomes dynamic as a result of the inclusion of several animated images of the pill, animated graphics, and a voice over summarizing how the pill is administered to patients. Each of the small story’s 15 panels contain at least two media elements including audio narration that extends throughout the story. Whether a visual narrative’s panels are static or dynamic, the items enclosed in a given panel collectively serve the purpose of supporting and

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amplifying the concept (or aspect of the story) that the panel is responsible for communicating. This is realized through encapsulation, which is the process of leveraging the innate qualities or attributes of a media element to capture and describe certain kinds of information (Duncan et al. 2016). For example, information about how an activity transpires over time can be represented using video. Encapsulation establishes the opportunity for a panel’s media elements to “function together to communicate a more complete message for the reader [or viewer]” (Fine-Pawsey 2013: 201) and, in doing so, exhibit certain types of relationships (Cohn 2016; Cohn et al. 2017). An autonomous relationship occurs when a panel’s concept is solely expressed with one media element (e.g. a full-panel video) and no other content exists within the panel. A dominant relationship occurs when multiple media elements exist within a panel but only one of them primarily conveys the panel’s concept while the other media elements only make a minimal contribution to the presentation of the concept (e.g. a full-panel video that include ancillary text annotations). An assertive relationship occurs when a panel includes multiple media elements and all of them make some sort of substantive contribution to the presentation of a panel’s concept (e.g. an animated chronological timeline imposed over a full-panel video that includes audio narration). This type of relationship establishes the opportunity for parity to exist meaning that each media element in a panel equally contributes to the storytelling effort. Parity occurs because the affordances associated with each media element are concurrently leveraged to communicate the panel’s concept (Barnes and Sontag 2022). Every panel of a visual narrative fulfils a specific role relative to the story being presented and, according to the Theory of Visual Narrative Grammar, four narrative positions exist and they enable a viewer to advance through any story (Cohn 2013b, 2014). An establisher (E) provides context by introducing the setting, locale, time, character (or actors), and any other necessary referential information. An initial (I) depicts the source and commencement of the story’s activity whereas a peak (P) presents the climax or completion of the story’s activity. A release (R) conveys the aftermath, dissolution, outcome, and implications of the story’s activity. Together, these positions form the EIPR narrative structure. Any narrative position can be extended in order to introduce more information about the story to viewers (e.g. EIIPR, EIPPR, etc.) and these prolongations actually repeat a particular narrative position so that additional information can be provided to viewers (see Fig. 12.1). It is possible for the panels

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Fig. 12.1  Standard EIPR narrative structure

of a small story to adhere to the EIPR narrative and it is possible for several of the small story’s panels to be a part of a prolongation. In this way a small story could consist of many panels, some of which may accentuate certain parts of the narrative.

Comprehension and Mental Models Small stories can be entertaining as well as informative and one of the primary outcomes of viewing a story is comprehension, that is, “the processing of information to extract meaning” (McNamara and Magliano 2009: 298). Comprehension results in the formation of a mental model (or conceptualization) of the information acquired from the narrative (Johnson-Laird 2005; Magliano et al. 2013). Mental models have many characteristics such as the abilities to represent the causal and the temporal relations associated with processes and action, support different forms of reasoning (i.e. abductive, deductive, and inductive reasoning), and run mental simulations. Mental simulations are based on the information that is contained within one’s mental model and they allow a series of actions and conditional scenarios to be visualized in the mind for the purpose of forecasting the future state(s) of events and phenomena (Furlough and Gillan 2018; Landriscina 2013). For example, one could generate a mental model and subsequently run a mental simulation to anticipate what outcomes will most likely follow a certain event presented in a narrative. Ultimately, a mental simulation feeds novel and refined information back into the original mental model. Mental models are constructed and exist in working memory, and they are stored in long-term memory when they are not in use. Working memory and long-term memory are both components of human cognitive architecture and they fulfil vastly different roles while working in tandem to facilitate comprehension (Sternberg 2009). Conscious cognition takes

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place in working memory, that is, working memory is where the mind exists whereas long-term memory acts a passive repository that holds knowledge. The production of a mental model immediately follows information extraction and working memory takes information acquired from a story and continually integrates (or binds) logically related information about different aspects of the story together along with details generated from one’s mental simulations and other relevant information retrieved from long-term memory (Baddeley 2018; Hitch et al. 2020). The only constraint that faces working memory during information processing is a limited capacity. Working memory can only maintain or accommodate a finite amount of information at any given time before its capacity is depleted and the activities associated with mental model production become inefficient. The depletion of working memory requires a person to dedicate more mental effort to comprehension and information processing, which will cause the person to experience cognitive load (Moreno and Park 2010; Sweller 2010). Effective comprehension depends on two factors: cohesion and coherence. As previously discussed, it is possible for a small story to adopt visual storytelling and for its panels to be arranged according to EIPR narrative structure. According to the Theory of Visual Narrative Grammar, all of the components of EIPR narrative structure are linked to each other because each component relies upon the information that precedes it and each component implicates the information that follows it (Cohn et  al. 2012). For example, E introduces information about the environment and context in which a story takes place and I and P act upon that information. Further, R may resolve the causality and activity demonstrated in P. The connectivity of information throughout a narrative is called cohesion and it is achieved when information within a given narrative component is explicitly linked to or overlaps with information of surrounding narrative components (Graesser et  al. 2004; McNamara et  al. 2010, 2014; Stainbrook 2016). Cohesion offers a narrative continuity because information presented in one part of the narrative is related to information presented in another part of the narrative. Coherence addresses the quality of comprehension and the integrity of the mental model that is produced after exposure to a cohesive narrative. A coherent mental model enables a person to arrive at a complete understanding of the information. In the case of a small story, each panel in the carousel should be relevant to overall narrative and the concept expressed in each panel should connect with information contained within

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the other panels. A narrative is considered incohesive when it lacks continuity and does not maintain any linkage between its narrative positions. Exposure to incohesion leads to an incoherent mental model and in order to achieve coherence a person is required to identify where discontinuity (or breakpoints) exists within a narrative and then refine their mental model (Hard et al. 2011; Kurby and Zacks 2012; Newberry and Bailey 2019). When information is omitted or excluded from a narrative the corresponding mental model produced from it will contain lapses and an individual will have to address the lapses by estimating and predicting what information is missing and then update their mental model accordingly (Oudega and van den Broek 2018; van den Broek and Helder 2017; van den Broek et al. 2015). This process is known as inference generation and it reconciles the information surrounding an interruption or gap in a narrative so that a coherent mental model can be produced. In the case of a small story that exhibits incohesion, a viewer must engage in inference generation and recursively update their mental model to arrive at an understanding of the narrative. Comprehension is influenced by the apparent interdependencies between encapsulation, parity, cohesion, and coherence to a great extent. A small story consists of multiple panels and each panel is tasked with presenting a concept or part of the narrative. Each media element employed within a given panel should have affordances that make it appropriate to capture and represent certain aspects of the concept (e.g. an animated graphic to depict an intricate piece of human anatomy) and the panel’s topic should receive appropriate coverage as a result of all of the media elements employed within the composition. This addresses encapsulation and parity, respectively. Continuity in the narrative is established and maintained when each panel in the small story’s carousel fulfils a role in advancing the story (i.e. EIPR narrative structure) and its content overlaps or relates to the content of the other panels. This addresses cohesion. Comprehension is based on the quality of the mental model produced from exposure to a small story. If cohesion exists, then it likely that a viewer will produce a complete mental model of the narrative. However, if cohesion does not exist then it is likely that the viewer will produce an inadequate mental model and they will be required to generate inferences in order to increase to the integrity of their mental model. One’s comprehension of a story is directly reflected by the condition of their mental model.

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Sample Small Story and Conclusion With an understanding of how storytelling can lead to understanding and how experiential health information can be relayed to audiences, let’s now explore the construction of a small story about one’s involvement in a car accident and subsequent recovery beginning with a description of the event. Imagine driving a four door mid-sized sedan on a two-lane street that surrounds a small shopping centre. Your goal is to reach the stop light that allows you to get on the main highway that will take you home. Before you reach the stop light you encounter an intersection where you are not required to stop but the traffic that flows perpendicular to your direction is required to stop. As you cross the intersection a car that should have stopped fails to do so and hits the passenger side of your car (i.e. t-bones your car). The impact rocks you and when you get out of the car to check on the other driver and to assess the damage you notice that you feel slightly dazed. Within days of the accident you experience headaches and neck pain and an examination by an orthopaedic doctor confirms that you suffered damage to your cervical spine. Recovery from this injury will require months of physical therapy. Your chronic headaches and neck pain subside with each visit to your physical therapist, and you value the camaraderie that you are able build with him and his office staff. An excerpt of this ordeal will be translated into a small story. The small story will utilize an EEIPRR variation of the EIPR narrative structure and contains six panels (see Fig. 12.2). The first panel of its carousel will serve as E and this panel can represent the setting of the story by displaying a map of the locale where the accident occurred, and audio narration can introduce viewers to the area. The second panel can serve as a prolongation of the first panel by displaying a 360° video of the actual

Fig. 12.2  EEIPRR variation of standard EIPR narrative structure

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intersection with annotations about the volume of traffic that surrounds the shopping centre (i.e. pop-up graphics) so that the viewer can fully grasp the context of the event. The next panel can serve as I and display a static photo of the view that one would have as they look through a windshield while driving. By using the affordances of platforms like AMP, Instagram, or Snapchat, a slow zoom could be integrated into the panel so the viewer can seem to get closer to the car’s dashboard. A snippet of an instrumental of music can be included in this panel to foreshadow the accident. The fourth panel can function as P and represent the impact of the car crash by displaying action stars that appear in synchronization with audio snippets of the sounds made by screeching brakes. Text annotations can be coupled with each action star in this panel and use bold keywords to demonstrate the driver’s immediate feelings of distress. The final two panels can serve as prolongations of R. The first of these panels can display an interactive 3D model of a human spine along with tappable text annotations that list out the sections of the spinal cord (e.g. thoracic, lumbar, etc.) and reveal exactly where the driver sustained damage to their cervical spine. Audio narration incorporated in this panel can further explain the nature of specific injuries to vertebrae and discs. The final panel can consist of a video demonstrating how a physical therapist stretches and mobilizes a patient’s cervical spine (e.g. neck stretching, etc.) while a linear timeline of the patient’s post-accident recovery horizontally scrolls across the lower half of the panel. It is evident that parity exists within each panel of the sample small story. For example, the 360° video included in the second panel effectively encapsulates and presents the area surrounding the intersection so that the viewer can become immersed in the scene and the traffic volume annotations provide critical information that can allow the viewer to understand the possible traffic conditions that predicated the accident. Ultimately, both panels’ media elements complement each other and support the panel’s overall concept. It is also evident that cohesion exists between the sample small story’s panels. For example, there is geographical and spatial cohesion between the first three panels because the viewer is presented with a map of the general location of the event in the first panel, an actual 360° video of the specific scene of the accident (along with traffic information) in the second panel, and a view that is representative of driving in that area in the third panel. There is cohesion between the fifth and sixth panels as well. The fifth panel displays the anatomy of a human spine and focuses on its cervical section and the sixth panel depicts a physical therapist treating a

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person’s cervical injury. The cohesion of the sample small story can dictate the viewer’s arrival at coherence and whether or not inference generation is required. Overall, the sample small story is capable of communicating the car accident ordeal. There are several implications that arise from the discussion of storytelling presented in this chapter. Social media platforms foster storytelling and they offer tools that enable people to succinctly and efficiently share their experiences (Marcelino et al. 2019). Small stories are relatively easy and fast to produce and this means that the storytelling production process can become shorter and that small stories can be distributed and shared more frequently, which is advantageous for practitioners of graphic medicine. Specifically, graphic medicine traditionally relies on static visual storytelling and the small story format enables visual storytelling to become dynamic because video and animation can be introduced into a narrative. Consequently, a viewer can better experience the narrative and make sense of it. The objective of graphic medicine is to compel reflection, empathy, inspiration, action, and empowerment (Czerwiec and Callender 2020). For example, Gurrieri and Drenten (2019) found that small stories produced using Instagram helped breast cancer survivors to provide and receive social support as well as address health disclosures practices, that is, how a survivor “make[s] known or reveal[s] new or hidden aspects of … health care consumption experiences, to others” (706). The application programming interfaces (APIs) of most social media platforms are extensible and afford the opportunity to integrate vastly different kinds of media elements into small stories (e.g. AMP allows everything from motion graphics to tweets to be embedded in a panel). From a theoretical perspective, it is necessary to explore whether small stories and the platforms on which they are housed have recursive affordances that can be exploited. Encapsulation capitalizes on the strengths of specific types of media elements and their ability to successfully represent portions of a panel’s concept. Parity is realized through the composition of the panel and how well the media elements work together. Cohesion is afforded by a small story’s narrative structure and, of course, the coherence of one’s mental model of the small story is achieved because of the narrative’s cohesion. The production and distribution of a small story relies on the infrastructure and support of its platform. The characterization of these relationships will become increasingly important for research as social media platforms continue to evolve. Investigations into the nature of viewers’ mental models

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of small stories are equally important because such inquiries will provide social scientists, visual communicators, and designers a better understanding of how storytelling fosters comprehension. This chapter attempted to demonstrate the viability of small stories for the communication of experiential health information and any future inquiries or experimentation with visual storytelling and small stories should seek to expand upon the discussion presented here.

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Han Barthelemy, Lisa LaPlace, Colleen Staatz, Matthew Hogben, Susan Robinson, Joh T.  Brooks, and Madeline Y.  Sutton. 2018a. Developing a Motion Comic for HIV/STD Prevention for Young People Ages 15-24, Part 1: Listening to Your Target Audience. Health Communication 33 (2): 212–221. https://doi.org/10.1080/10410236.2016.1255840. ———. 2018b. Developing a Motion Comic for HIV/STD Prevention for Young People Ages 15-24, Part 2: Evaluating a Pilot Intervention. Health Communication 33 (3): 229–237. https://doi.org/10.1080/1041023 6.2016.1255841. Yi-Frazier, Joyce P., Katherine Cochrane, Connor Mitrovich, Michael Pascual, Emil Buscaino, Lauren Eaton, Neil Panlasigui, Clopp Bailey, and Mailk Faisal. 2015. Using Instagram as a Modified Application of Photovoice for Storytelling and Sharing in Adolescents with Type 1 Diabetes. Qualitative Health Research 25 (10): 1372–1382. https://doi.org/10.1177/1049732315583282. Spencer Barnes  is Associate Professor of Visual Communication at the University of North Carolina at Chapel Hill with an EdD (Doctor of Education). His research interests concern the design and efficacy of dynamic visual communication products and the application of 3D animation to enhance the comprehensibility of complex topics in the context of journalistic storytelling. Dr. Barnes serves on the editorial board of Visual Communication Quarterly. He teaches coursework in graphic design, 3D animation, visual effects, and inferential statistics.

CHAPTER 13

Medical Progress, Health, and the Chronic Disease of Racism in Kindred: A Graphic Novel Adaptation Tatiana Konrad

Introduction This chapter focuses on Damian Duffy and John Jennings’ graphic adaptation of Octavia E. Butler’s novel Kindred (1979), Kindred: A Graphic Novel Adaptation (2017),1 exploring how the graphic novel, viewed here as a pathography, visualizes racism from the perspective of the health humanities. The graphic novel’s multiple references to health and medicine are examined, and the issue of medical progress, as depicted in the graphic novel, is discussed. Medical progress as a tool through which racism is portrayed as a disease that the United States has not been able to cure for centuries is explored. Kindred: A Graphic Novel Adaptation tells the story of an African American woman, Dana, who is forced to travel in time and meet her T. Konrad (*) Department of English and American Studies, University of Vienna, Vienna, Austria e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0_13

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ancestors. As the narrative blurs borders between time and space, depicting its main character’s life in twentieth-century California and nineteenthcentury antebellum Maryland, it not only explores the United States’ slave past and ongoing racial oppression but also provides a detailed analysis of racial progress and lack thereof through its frequent references to medicine. The dramatic differences in understanding health and illness, ways to treat patients, and general medical awareness that the graphic novel visualizes and verbalizes, contrasting Dana and the nineteenth-­century characters (including the best doctors of that time), emphasize the simultaneous problem of racial progress and racial stagnation. The chapter explores how, through graphic images of health and medicine, Kindred: A Graphic Novel Adaptation depicts racism as a chronic disease of American society. I am interested in how visualization of these issues helps the reader to perceive anti-Black violence and racial injustice in the United States. One of the major aims of this chapter is thus to demonstrate how the health humanities can be a helpful lens through which to explore racial oppression.

Health Humanities, Race, and the Graphic Novel This chapter views the health humanities and medical humanities as similar yet separate endeavours. Cole et al. (2015) interpret “medical humanities” as follows: “We define medical humanities as an inter- and multidisciplinary field that explores contexts, experiences, and critical and conceptual issues in medicine and health care, while supporting professional identity formation” (12, italics in original). Medical humanities thus rely heavily on medical knowledge and cultural representations and interpretations of that knowledge to help reformulate medicine as a science where human interaction is of primary importance. In turn, the health humanities are a more inclusive field, for it, as Olivia Banner (2019) claims, drawing on Paul Crawford et al., “encompasses the wide range of professional identities and nonprofessionals—those typically marginalized by the medical humanities such as patients, caregivers, and allied health professionals— that a humanities addressing health should include” (2). Arno K. Kumagai (2018) persuasively claims that medicine is, first and foremost, “a social and ethical practice: a practice in which science is applied to the care of human beings in order to alleviate suffering and enhance health” (ix). Multiple actors are involved in this ethical practice. Due to that, an involvement of humanities in various issues related to health is not just

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appropriate but, in fact, essential to achieve medicine’s primary goal: to help humans and nonhumans in the issues broadly related to health. Medical progress has not only taught humans much about our own bodies and the bodies of other beings, but also positively affected humanity at large. Medical research and innovations save humans from various diseases and infections, ease pain, help to recover more quickly, offer different possibilities for people with disabilities to adapt and function in a desirable way. Yet, medical advancement has also made medicine complex and at times scary for those who are not professionally related to the field. Medical practitioners note that medicine can be very “challenging” for patients because it cannot perform magic: often, medicine helps a patient to go through an illness without curing it; in this process it sometimes becomes hard to identify whether an illness or medical help complicates the life of a patient more (Skorzewska and Peterkin 2018, 5). The health humanities are a particularly helpful intervention in cases like this one. The health humanities uncover ways for medical practitioners, patients, as well as relatives and friends of both groups to understand health, illnesses, the role of medical personnel, the anxieties and expectations of patients, the function of those who surround patients and medical practitioners, the importance of the built and natural environments in a patient’s life, and so on. Such an interaction facilitated by health humanities can happen in a variety of ways, including through cultural texts like graphic novels. Such texts formulate stories, present stories, and make others listen to these stories. Cultural texts thus play a very important role in mediating the relationship between medicine and culture and foregrounding the voices of patients, practitioners, and other individuals. Skorzewska and Peterkin (2018) accentuate the importance of such texts for practitioners, who learn new ways to work with their patients, and argue that health humanities “help foster narrative competence—the ability to work with stories, to listen optimally, and to co-construct the meaning of illness and healing with patients over time. They foster the ability to see—both literally and metaphorically—and to reflect—to step back and learn from past experience so that it can be applied in the here and now. They promote the ability for self-care” (10-11). Writing about health and illness and reading such experiences are “valuable contributions to medicine and to the way doctors and patients deal with illness and death” (von Egelhardt 2020, 4). Literary and cultural texts about medical issues help to better understand medicine itself and the human interaction in the field. But they also can use medicine to communicate other socio-political problems and

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concerns, such as the graphic novel Kindred: A Graphic Novel Adaptation that explores the problem of racism in the United States through various means, including medicine. The role of the metaphor in the health humanities is substantial. Metaphors are used when dealing with illnesses. According to Anita Wohlmann (2019a), metaphors “allow for ambiguous, flexible spaces around the meaning of a word, and experience or an illness in which new meanings can be negotiated” (“Analyzing” 35). In other words, the concepts that are unknown to a person not related to medicine can be clarified through metaphors by medical professionals (Wohlmann 2019a, 2019b, “Metaphor” 136). Similarly, Shane Neilson (2019) contends that while there are different ways in which a doctor and a patient can interact, when conversing about an illness, a treatment, possible consequences of various illnesses, and so on, doctors often avoid professional terminology that might be unclear and confusing for patients and instead use everyday language full of such literary devices as “idiom, metonymy, and metaphor,” which ultimately helps strengthen the bond between a doctor and a patient though a productive conversation (145). Kindred: A Graphic Novel Adaptation, as this chapter will further demonstrate, both uses metaphor to communicate medical issues and employs medicine as a metaphor to explicate racism. In doing so, the graphic novel dramatically expands the meaning and role of metaphor in texts that raise medical concerns. Moreover, as a graphic narrative, it effectively communicates medical issues relevant to the plot. Ian Williams (2012) foregrounds the special role of comics “in the discussion of difficult, complex or ambiguous subject matter” due to the ability of such texts to “effectively relate the patient experience” (21). While Kindred: A Graphic Novel Adaptation is not an explicitly medical graphic narrative, this chapter argues that its usage of medicine in different scenes—both literally, when some characters fall ill and receive medical treatment, and metaphorically, to depict racism as a disease—foregrounds the role of the human interaction in medical issues and reinforces the pathological nature of racism. This, as I will further demonstrate, is particularly strongly communicated in the graphic novel through visuals. Since racism plays an important role in this analysis, it is crucial to address the place of race and racism in medicine, and how racism impacts the issue of health. Daniel Goldberg (2014) argues that race and health as such are unrelated (271). They have been made related by perpetual anti-­ Black practices that turned health into a form of privilege to which African

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Americans have only restricted access, if at all (271). In the antebellum United States, health of enslaved Black people was viewed paradoxically by enslavers: on the one hand, it was crucial that the enslaved were healthy to perform the work allocated to them, yet, on the other hand, the death of a Black individual was viewed only as a financial loss by the enslaver, for an enslaved person could be easily substituted by another one. Various inequalities that racism generated in the antebellum era remained largely in place after the abolition of slavery in 1865. One way racism continues to manifest itself today is through medicine. For Goldberg (2014), “racism is a powerful social determinant of health” (274). First, “Racism is fundamentally related to stigmatization and discrimination, which exert significant effects on population health and its distribution” (274). Second, racism continues to dominate the medical world. John Hoberman (2019) foregrounds “[r]acial health and treatment disparities,” which is “inferior care for black patients” (111). Eradicating medical racism is thus one important task, and health humanities can help with this considerably. One way is by including race-related themes in the curricula that would make future practitioners aware of the problem and help identify ways to fix it and adhere to the principles of “medical ethics and social justice” (Hoberman 2019, 111). Scholars emphasize that treating every patient equally, irrespective of one’s race, gender, sexuality, class, age, ability, etc., can help foster social justice (Bleakley 2015, 4). Health humanities can help create just and equal human interaction in the medial world, and outside it, by foregrounding the voices of those who experience marginalization and discrimination. According to Sayantani Dasgupta (2014), “Fundamental to the teaching of health and humanities are questions of representation. Who speaks? Who is heard? Who is spoken for and about? These questions inevitably break down along lines of race, class, gender, and power” (255). Giving space to oppressed individuals and listening to their experiences can dramatically transform the medical world and help secure justice for all. Kindred: A Graphic Novel Adaptation is one such text that through medicine communicates health inequalities experienced by Black Americans as well uses medicine and health as lenses though which to contemplate racism more generally.

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Staying Healthy, Staying Alive: Racism in Kindred: A Graphic Novel Adaptation Kindred: A Graphic Novel Adaptation focuses on Dana, a Black American woman living in 1970s California. Dana is happily married to a white American man, Kevin. Due to a peculiar connection that her white ancestor Rufus has with her, Dana has to travel in time and place every moment Rufus’ life is under threat in order to save him. Rufus lives in antebellum Maryland; he is the son of a plantation owner Tom Weylin. When Dana travels in time and space to help Rufus, she not only simply gets to know her ancestors but also witnesses and experiences life in the antebellum South. This life was largely formulated through racism—an ideology that white people adhered to, enslaving Black individuals, forcing them to toil, whipping them, raping Black women, separating Black families, and selling Black Americans as pieces of property. Dana soon realizes that her own existence is the consequence of institutionalized racism: Rufus uses a Black woman, Alice, as his sex slave, and, as a result the two have children; one of them is Hagar, Dana’s direct ancestor. Traveling in time and space is described as a scary experience, and the more time Dana spends in the antebellum South, the more anxious she becomes for her own life and for the lives of other Black people whom she meets on the plantation. Through Dana’s life in antebellum Maryland and 1970s California, the graphic novel, just as Butler’s original novel, reveals the history of anti-Black violence and racial oppression. It comments on the centuries-long struggle of Black Americans for equality and emphasizes that the racism Dana experiences and witnesses in the 1970s is a direct consequence of slavery, thus outlining a peculiar kind of kinship that Dana has with her ancestors. This kinship, as the graphic novel illustrates, goes beyond blood relationship and becomes explicit in the ways generations of Black people have been facing racial injustice for centuries. Medicine is one prism through which Kindred: A Graphic Novel Adaptation reveals and examines racism. There are three major ways in which medicine plays a role in the graphic novel. First, there are numerous scenes when characters fall ill and need medical assistance and care. Second, medicine is foregrounded through Dana’s supreme medical knowledge, compared to the characters from the nineteenth century, and the way she uses it to help both Black and white characters. Third, medicine is a lens through which racial injustice is reinforced in the graphic novel. All these aspects turn Kindred: A Graphic Novel Adaptation into a pathography, a

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genre that Anne Hunsaker Hawkins (1999) defines as “a form of autobiography or biography that describes personal experiences of illness, treatment, and sometimes death” (1). Through the fictional story of Dana, the graphic novel reconstructs the experiences of Black Americans whose ancestors were exploited by white enslavers and who continue to face racism today. The graphic novel emphasizes how detrimental racism is to the Black mind and body and thus foregrounds health injustice as one of the consequences of racial oppression and anti-Black violence. Harriet A. Washington (2006) draws attention to “the troubled history of medical experimentation with African Americans” that overtly reveals “injustice in health” (5). The graphic novel contributes to such discussions, uncovering the troubled history of Black health that has been shaped via racist practices. Dana’s ability to travel in time and space is largely grounded in medicine and specifically related to the issue of health. She only finds herself in the antebellum South when Rufus is in danger. Dana’s mission is thus always to help Rufus and save him from death. This is one way in which the graphic novel brings the issue of health to the fore. While saving one from death does not equal to making one healthy, the graphic novel illustrates that Dana indeed makes Rufus healthier in every situation when he is in danger. In my usage of the term “health,” I rely on the 1946 definition of “health” provided by the World Health Organization that remains actual today: “Health is a state of total physical, social, and mental wellbeing and not merely the absence of disease and infirmity” (qtd. in von Egelhardt 2020, 4-5). This is exactly what Dana tries to do every time she saves Rufus: she helps restore his relationship with relatives, teaches him to act in a more humane way towards enslaved Black people and thus be a better human being. Kindred: A Graphic Novel Adaptation explores racism and anti-Black violence through physical and mental health. This is communicated in the graphic novel visually and verbally. Nimrod Tal and I (2018) argue elsewhere that graphic novels and comics are unique cultural texts due to their “visual-verbal” elements: “the verbal is not reduced to the text, and the visual is not merely about the image” (8). Hillary L. Chute (2016) provides another helpful approach to graphic novels and comics, paying special attention to the “spatial grammar of gutters, grids, and panels suggestive of architecture” (4). Through visual and verbal elements and the way these elements are arranged—all of which are unique in every graphic text—graphic novels and comics convey different issues to their

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readers, including racism and disease. Irmela Marei Krüger-Fürhoff (2020) throws into relief the aesthetics of graphic narratives, and regarding medical graphic texts claims that “comics in the genre of ‘graphic medicine’ are aesthetically appealing and address ethical, epistemological and socio-­ political issues, making them key for medical research, teaching and practice” (44). Ian Williams (2014) calls graphic texts that focus on illness “the intellectual, emotional and manual act of somatic self-expression” (74). Kindred: A Graphic Novel Adaptation utilizes medicine, and specifically physical and mental health, medication, and medical knowledge, to discuss racism in the United States as a socio-political issue. I argue that the graphic novel uses medicine as a prism through which to perceive racism, depicting moments when the mind and the body of a Black individual are tortured and harmed as well as metaphorically representing racism as a disease of American society. Numerous scenes in the graphic novel reinforce the importance of staying healthy and alive for the characters. These processes are largely connected to race. Black characters are physically abused and tortured by white characters, which, in some cases, also leads to deterioration of Black characters’ mental health. They never expect any medical help from white people. In turn, white characters do not experience any kind of abuse and get help from the local doctor whenever they need it. Importantly, all these experiences are mediated through Dana: her travelling in time and space is largely connected to the issue of health, for she helps save Black and white characters by providing them with necessary medical treatment as well as witnesses and experiences anti-Black violence herself. The novel opens with Dana’s first travel to the antebellum South, depicting her saving boy Rufus from drowning (see Figs. 13.1 and 13.2). The mother of the boy is terrified witnessing Dana—a Black woman—saving her child. In that scene, Dana’s experience of the life in the antebellum South ends abruptly: once a rifle is pointed at her face, she is transferred back to her apartment in California. Only in the next scene, when Dana is forced to travel again, to save Rufus from fire, does Dana witness how dangerous life in the antebellum South can be for a Black person. Having helped the boy, she walks out of the house to explore the locale. The scene that takes place later makes Dana fully aware of the time she finds herself in: she realizes that Blackness is perceived as an inferior characteristic in the country where slavery is institutionalized, and a Black person has no rights. Hiding behind a tree, she becomes an eyewitness to a brutal act, seeing a white man whipping a Black man, who, as the reader later finds

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Figs. 13.1 and 13.2  Dana is performing cardiac massage on Rufus and giving him artificial respiration, thereby reanimating the boy (p. 13). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

Fig. 13.3  Dana witnesses Alice’s father being whipped by a white man (p. 43). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

out, is the father of Alice—Dana’s ancestor (see Fig. 13.3). Despite this and multiple other instances of white people abusing Black people, Dana continues to save white characters. In so doing, she also tries to change their racist attitudes. Thus, when Rufus grows up, she saves him again, caring for him when she discovers him beaten up (see Fig. 13.4). Dana is forced to care for Rufus: every time he is in danger she does not choose to

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Fig. 13.4  Dana is taking care of a beaten-up Rufus (p. 115). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

travel in time and space to help him, but she is involuntarily transferred to him. She performs her duty never doubting her actions. Along with saving Rufus multiple times, Dana helps his parents. First, she tries to reanimate Rufus’ father, Tom Weylin, when he has a heart attack (see Fig. 13.5). The full-page image depicts Dana meticulously following the procedure, performing cardiac massage on the man and giving him artificial respiration. As Dana herself notes, she does all that despite the feeling of “disgust” (Butler et al. , 183). There could be two reasons for the emergence of such

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Fig. 13.5  Dana is trying to save Tom Weylin when the man is having a heart attack (p.  183). Kindred: A Graphic Novel Adaptation, by Octavia E.  Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

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a feeling: first, the man is old and Dana does not feel comfortable being so close to him, and, second, Dana is repulsed by the man’s inhumane attitude and actions towards Black people, including herself. Yet, just as in case with Rufus, Dana chooses to try and save the man, although this time she fails. Shortly after the funeral of Tom Weylin, the health of Rufus’ mother, Margaret, deteriorates and Dana keeps the woman company, reading and talking to her, while Mrs. Weylin is in bed. The graphic novel also depicts multiple instances when Dana helps save lives of Black characters. Yet these scenes are dramatically different from the scenes portraying white characters in need. The numerous images represent Black characters being abused, tortured, and humiliated. For example, the first time Dana realizes how Black people can be legally treated in the antebellum South is when she witnesses a white man whipping a Black man, Alice’s father (see Figs. 13.3 and 13.6). Dana herself becomes the victim of institutionalized slavery. Not only is she unable to behave as she is used to and has to pretend to be her husband’s slave when the two are on the plantation, but she is also treated by white people as they believe a Black person deserved: she has to sleep on the floor, live in the same unbearable conditions as the plantation slaves do, and, finally, she is once whipped by Tom Weylin for her behaviour that he considers inappropriate for a Black enslaved woman (see Fig. 13.7). In another scene, the graphic novel depicts Rufus carrying Alice whose body is full of wounds (see Fig. 13.8). He begs Dana to help Alice. All three images (see Figs. 13.6, 13.7, and 13.8) foreground anti-Black violence as one of the most brutal manifestations of racism. They portray the Black body as unfree: in Figs.  13.6 and 13.7, the hands of Alice’s father and Dana, respectively, are tightly fixed so that the Black people could not escape the punishment, whereas in Fig. 13.8, Alice’s attempt to flee fails and, injured, she literally ends up in the hands of her enslaver and abuser Rufus. These Black bodies are abused and tortured: the whip in the first two images and the wounds on the bodies of the characters depicted in all three images overtly illustrate that these Black bodies are violated. Moreover, the characters are in pain, as can be perceived via their facial and bodily expressions, and, especially, the distorted faces, tensed mouths, and screams that become audible without any verbal indication. Through such an explicit illustration of anti-Black violence, the graphic novel, according to Mollie Godfrey (2020), foregrounds the “relationship between the spectacle of black pain and the need to witness rather than

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Fig. 13.6  The Black body in pain (p. 42). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

become numb to that pain” (93). These abused bodies are also metaphorical wounds, in addition to being literal signs. They indicate the trauma of Black American experience and can be linked to Dana’s contemporary and historical experiences. The graphic novel makes pain palpable through its visual aesthetics, establishing a new perspective on understanding health through the lens of race. There is a crucial difference in the way the novel approaches health through the white characters (see Figs. 13.1, 13.2, 13.4, and 13.5) and the Black characters (see Figs.  13.3, 13.6, 13.7, and 13.8). The white

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Fig. 13.7  Dana is being whipped by Tom Weylin (p. 162). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

characters get into accidents, fall ill, and die due to unpredictable circumstances or through natural events. In turn, the Black characters experience physical pain and go through long and painful healing because of abuse. Racism becomes apparent in these images, for they authentically depict racial injustice and the very literal, physical harm that it does to Black people. Moreover, racism is further reinforced through the characters Rufus and Alice. While Rufus survives no matter what happens to him, Alice’s fate is different. The reader first gets to know Alice as a young girl. She and Rufus are friends; yet their relationship changes dramatically as the two grow up. Rufus falls in love with Alice, but she wants to be with a Black man, Isaac. Jealous and obsessed, Rufus does everything to separate the two. Isaac and Alice attempt to flee, yet they are caught: both are severely injured by dogs and white people; Isaac is sold South, whereas Alice is bought by Rufus and thus returned to the plantation and enslaved. Dana intervenes in the relationship between Rufus and Alice, trying to help both to co-exist peacefully. Dana attempts to influence Rufus and change his attitude towards Black people, reminding him that he and Alice used to be friends. At the same time, she advises Alice not to rebel because

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Fig. 13.8  Injured Alice is returned to the plantation (p.  136). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

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Fig. 13.9  Dana finds Alice’s dead body (p.  219). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

this might get her in serious trouble; moreover, she can be killed. While realizing the hopelessness of her situation Alice is unable to accept the way she is treated, being Rufus’ sex slave, the way Isaac and all other Black people whom she knows have been treated, as well as the fact that her mixed-race children will never be free. Alice cannot change the way Black people are treated in the antebellum South, but she also does not want to live the way white people make her. Towards the end of the novel, Dana finds the dead body of Alice hanging in a barn (see Fig.  13.9). This

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moment makes Dana realize that while she has been diligently saving Rufus, she herself has indirectly contributed to the maintenance of anti-­ Black violence on the plantation. Certainly, Rufus’ death would not guarantee that Alice would have a happy life, yet it was Rufus who enslaved and sexually abused her. Dana has been trying to keep both Rufus and Alice alive, especially so until the birth of Hagar2—the daughter of Alice and Rufus, and Dana’s direct ancestor. Examining this graphic novel elsewhere, I argue that “Dana’s investment in Hagar’s birth is problematic,” yet I also emphasize that “Dana is not responsible for the racial violence, abuse, and oppression directed at and experienced by African Americans” (Konrad 2022). Rufus exercises racial violence, not Dana. Rufus is the representative of the pro-slavery majority because of whom slavery remains an institutionalized form of oppression. Yet in this specific case, helping Rufus (Dana has basic medical skills to do that) and not being able to help Alice, Dana further imbalances the relationship between Rufus and Alice, strengthening Rufus’ power. Dana herself notes once: “I wish I’d left Rufus lying in the mud! To think I saved him so he could do this …! … He’s no good. All grown up now. And part of the system” (Butler et al. 2017, 197). Dana does not sabotage the relationship between the two, and Hagar is born. Yet through such actions, the graphic novel does not try to communicate Dana’s selfishness, but rather emphasizes that it is impossible to change history, that even if Alice were not sexually abused, there were numerous Black women who were treated this way by their enslavers, and that one must face this painful and frightening chapter in American history. Kindred: A Graphic Novel Adaptation foregrounds racism through the depiction of Black bodies that are whipped and tortured, or dead. Such a violation of physical health can also lead to the deterioration of mental health. This, for example, happens to Alice, who, after having been bitten by dogs, pummelled by white people, and returned to the plantation, turns, in the words of Dana, into “a very young child again”: “Incontinent, barely aware of anything but hunger, discomfort, pain … she had to be fed, spoonful by spoonful” (Butler et al. 2017, 148). Through images like this, the graphic novel reinforces the destructive nature of racism that acts as a disease on the Black body, harming it physically and mentally. The characters’ bodies, however, are not only harmed in the novel but also healed. Medical help is provided by Dana and the local doctor. While Dana helps everyone who needs her, irrespective of skin colour, the doctor is only available for white people. Racism thus can be vividly perceived

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Fig. 13.10  Dana is caring for severely injured Alice (p. 138). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

through the medical help that is (not) provided to the characters who need it. The image of Dana taking care of Alice after her failed attempt to flee (see Fig.  13.10) is reminiscent of Dana taking care of Rufus (see Fig. 13.4). Dana does not differentiate between white and Black characters; she is equally eager to help Rufus and his parents as well as the Black people on the plantation. Importantly, while the white characters get help from both Dana and the doctor, the Black characters can count only on Dana. Thus, when Dana asks Rufus to bring Alice to the doctor (note that to white characters the doctor himself comes), Rufus explains that he does not have money for this (because he had to buy Alice to prevent her from being sold South), whereas Tom Weylin will not even consider this: “Daddy won’t pay for doctoring niggers” (Butler et al. 2017, 138). Rufus is right about his father, for the man treats the enslaved Black people on his plantation as his property. These individuals are seen as

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less-than-­human and, for that reason, according to their enslaver, they do not deserve the same treatment as white people. When seeing Alice in bed, ill and helpless, Tom Weylin says: “Damn! Kindest thing you could do for her would be to shoot her” (Butler et al. 2017, 148). Professional medical help—at the state as it was in the nineteenth century—is unavailable to Black people. Not only are Black people abused, whipped, and overworked, which leads to the dramatic deterioration of their health, but they are also excluded from the medical world, both as patients and as practitioners, according to Kindred: A Graphic Novel Adaptation. Illustrating such an exclusion, the graphic novel excavates the historical roots of medical racism. In the twenty-first century, scholars continue to accentuate the ongoing discrimination in the medical world that Black Americans experience. John Hoberman (2012), for example, describes the medical situation that African Americans find themselves in as “a form of ‘internal colonialism’” (146). He emphasizes that “class” works differently for Black Americans, suggesting that even those individuals who have a certain form of privilege, remain subjected to racism and discrimination, including in the medical world: “what separates the African American relationship to the medical world from that of whites is that elevated social status does not eliminate racial stigma and estrangement that has persisted since emancipation” (148). Dana’s status in the graphic novel is, however, dramatically different compared to the other Black characters. The fact that she comes from the future, and thus possesses certain kinds of medical knowledge, makes her superior to both Black and white characters on the plantation. Dana is not a medical practitioner, but she comes from the time when medicine has undergone substantial development compared to the state of this science in the nineteenth century. Her knowledge, therefore, makes her appear as a magician who can save lives. Dana herself gradually realizes that the life in the nineteenth century can be very dangerous, especially for a Black person: there is no medical help (the one that is available cannot be trusted) and no medicine, yet there is a constant threat to be injured either via toiling or by white people. Because of this, aspirin becomes one of the most important items that she includes in her emergency kit, preparing for the next travel (see Fig. 13.11). A package of aspirin is depicted right in the middle of the image, which helps reinforce the vital role that medication can play in the nineteenth century as well as foregrounds the importance of medicine in human lives more generally.

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Fig. 13.11  Dana’s kit includes aspirin (p.  107). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

Aspirin plays a crucial role when injured Rufus stays in bed, tormented with pain. Dana quickly realizes that aspirin will help him. She explains that this is “medicine,” and adds: “In my time, people use them against fever and pain. Will you take it?” (Butler et al. 2017, 126). Rufus agrees to take aspirin, which, as he notes once he puts a pill into his mouth, does not taste fine (see Fig. 13.12). Dana is forced to stay with Rufus until the doctor arrives because many people on the plantation, among whom is Tom Weylin, believe that she “know[s] enough to do some doctoring” or perhaps even “more than doctoring,” the latter is a reference to her ability

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Fig. 13.12  Dana is giving aspirin to Rufus to ease his suffering (p. 126). Kindred: A Graphic Novel Adaptation, by Octavia E.  Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

to suddenly disappear and come back (Butler et al. 2017, 126). Despite Dana’s progressive knowledge, she remains viewed as a Black person, which in the eyes of white people means, among other things, uneducated. Thus, when the doctor arrives, he wants to talk to Dana to find out more about Rufus’ condition. The doctor, however, immediately doubts Dana’s ability to estimate the situation and communicate to people, as he asks Tom Weylin: “Does she have any sense? Can she answer simple questions?” (Butler et al. 2017, 129). Dana shares with the reader: “The doctor asked me his simple questions about fever and delirium—and whether I even knew what the word meant” (129). Dana also assesses the doctor’s medical skills, characterizing him as follows: “Stupid little man. One step up from spells and good luck charms” (129). The scene explicates racism

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through medical progress: Dana is evidently more advanced in various medical questions compared to the nineteenth-century characters, including the doctor, and her actions indeed save lives, yet her Blackness signifies a whole panoply of derogative characteristics for the white characters, not allowing her to be viewed as equal. Despite all her efforts, she remains uneducated, stupid, and incapable of providing any help in the eyes of the white characters, while at the same time, paradoxically, she is expected to know how to save lives. When Tom Weylin dies, Rufus blames Dana for this, saying, “You let him die!” after she has actively tried to reanimate the man, thus making Dana responsible for the death of the man (Butler et al. 2017, 184). This inconsistent vision of Dana, as both a saviour and a useless slave, is racially charged and actively communicated to the reader through the lens of medicine. Medical progress is reinforced in the graphic novel in multiple scenes. For example, when Dana checks Alice’s injured body (see Fig. 13.10), she asks Rufus, “Rufe, have you got any kind of antiseptic?” to which bewildered Rufus responds, “Anti-what?” (Butler et  al. 2017, 138). Dana immediately starts thinking what other options she has to save Alice without access to modern medicine, and soon asks Rufus to bring her “a salt solution” (138). Rufus is perplexed at Dana’s choice, sharing with her that this is what his father uses to punish enslaved Black people on the plantation (noteworthy, while Tom Weylin indeed causes more suffering in such a way, he is unaware that this kind of punishment also potentially saves lives, being a primitive form of disinfection). Rufus asks how Dana managed to cure her own back after whipping, to which Dana responds: “I washed it and used medicine. Here brine will have to be my medicine” (Butler et al. 2017, 139). Dana is aware of the dangerous consequences that a whipping can have, for earlier in the novel, treating her injured back, she notes: “Heaven knew what kind of infection you could get from a whip kept limber with oil and blood” (107). The scene further emphasizes the gap in medical knowledge that Dana and Rufus have when Rufus asks why Dana does not have “the big thick scars some of the hands have,” to which Dana responds that her body simply functions in such a way that she does not get “keloids” (139). Dana frequently uses medical terms and performs medical actions that are unknown to the nineteenth-century characters. This not only emphasizes the time gap between the characters but also helps fight racial prejudice that surrounds Dana. Because Dana is Black, she is automatically perceived by white characters as uneducated and helpless, yet her medical knowledge helps demonstrate that her race

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does not have anything to do with these kinds of perceptions, and the ones who are indeed uneducated and helpless in the graphic novel are the white characters whom Dana perpetually saves. In the graphic novel, medicine makes racism visible: it heals the wounds that Black characters get as a result of anti-Black violence, but it also functions as a cure against racism. When Alice decides to flee, she believes that medicine can help her realize this dangerous plan successfully. Dana shares with the reader: “A few weeks later, Alice asked me to steal her a bottle of Margaret’s laudanum to keep the baby quiet when she took the children and ran” (Butler et al. 2017, 204). Dana’s words are accompanied by an image: a bottle of the wished medicine in Dana’s hand (see Fig. 13.13).

Fig. 13.13  Dana steals a bottle of medicine to help Alice flee (p. 204). Kindred: A Graphic Novel Adaptation, by Octavia E.  Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

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Dana firmly holds the bottle; the brown and white lines that surround it suggest the importance of this medicine in Alice’s plan: laudanum can help Alice make her baby sleep, which makes her chances of escape greater. While this medicine certainly does not guarantee Alice freedom, neither does it have power to cure racism that the woman experiences, its value is nonetheless foregrounded. This bottle of medicine is portrayed as one way through which slavery can be escaped. The graphic novel thus suggests that just as with an illness or disease, medicine can be used to cure the oppression that Black people experience.

Black Body, Race, and Future in Kindred: A Graphic Novel Adaptation Kindred: A Graphic Novel Adaptation is a work of speculative fiction. Commenting on the plot of the original novel Kindred, Octavia E. Butler, emphasized that time and space travel was a strategic political tool that she chose when writing the novel. Butler confessed that the novel “was a kind of reaction to some of the things going on during the sixties when people were feeling ashamed of, or more strongly, angry with their parents for not having improved things faster, and I wanted to take a person from today and send that person back to slavery” (Butler qtd. in Yazell 2020, 159). One can speculate that the graphic adaptation of Butler’s novel is a reaction to racism that can be witnessed today, in the United States specifically but also in the world more generally. Using time and space travel in the context of slavery, racial oppression, and inequality, the graphic novel merges three distinct historical periods—antebellum America, 1970s America, and today—and foregrounds racism as a perpetual problem in the United States. Through the references to medicine, the graphic novel metaphorically depicts racism as a disease. In line with Kenneth M. Boyd (2000), I distinguish between the terms “disease,” “illness,” and “sickness,” and, in the context of Kindred: A Graphic Novel Adaptation, refer to racism as a disease, that is, “the pathological process” (10). In doing so, I emphasize the destructive nature of racism that literally leads to various health issues (from whippings during slavery to anti-Black violence one today can witness that often lead to the deterioration of Black Americans’ physical and mental health) and figuratively makes the United States appear as a diseased body, with inequality, injustice, and oppression being

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Fig. 13.14  The opening image of Dana (n.p.). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

detrimental to the productive functioning of the state and to the health of the nation as such. Before the graphic novel even begins, on an unnumbered page, above the blurb, the reader is provided with an image of a Black woman (whom we later get to know as Dana) lying in a hospital bed; her left arm is missing (see Fig. 13.14). A few pages later, the image appears again, in a prologue, thus opening the graphic novel. The image is accompanied by Dana’s words: “I lost an arm on my last trip home” (Butler et al. 2017, n.p.). In her analysis of the graphic novel, Godfrey (2020) stresses the crucial role of this image because it communicates “the structural pain inflicted on Dana by the past,” but also suggests that “we will need more images to understand the relationship of that past to our future’ (91). This image mediates past and present through the issues of race and disability, for the woman is Black and disabled.

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Speculative fiction is a powerful socio-political tool through which to explore multiple serious issues, including racism. Sami Schalk (2018) emphasizes the role of speculative fiction in “imagin[ing] alternative possibilities” (1). Specifically, Schalk claims: “Speculative fiction allows us to imagine otherwise, to envision an alternative world or future in which what exists now has changed or disappeared and what does not exist now, like the ability to live on the moon or interact with the gods, is suddenly real” (2). In doing so, speculative fiction forces its readers and viewers to “think differently,” that is, “[i]t makes us examine things we have never examined. Even better, it makes us re-imagine things we thought we knew” (Jakober qtd. in Schalk 2018, 2, italics in original). Speculative fiction thus has a great potential to educate readers and viewers, to make us rethink so many issues and events; but it is also a valuable platform via which to fight discrimination and facilitate equality, diversity, and inclusion. Schalk (2018) accentuates the important role of speculative fiction for oppressed groups and individuals: it can portray the world where “relations between currently empowered and disempowered groups are altered or improved” (2). In doing so, speculative fiction critically engages with the present and reconstructs the future for all. It can also invent scenarios that depict “the worst,” that is, speculating about the ramifications of our deeply disbalanced and unequal present (2). Kindred: A Graphic Novel Adaptation powerfully connects the present and the past (the antebellum South) to emphasize the ongoing nature of racism and censure the current social, political, and cultural choices that allow racism to happen. Thereby, it forces the reader to think about the problematic present and imagine the ways in which the future can be different for all, and for Black Americans in particular. Schalk (2018) foregrounds the process of “defamiliarization,” that is, “the way speculative fiction texts make the familiar social concepts of (dis) ability, race, gender, and sexuality unfamiliar to encourage readers to question the meanings and boundaries of these categories” (114). The scholar draws on Darko Suvin’s ground-breaking concept of “cognitive estrangement” that describes the relationship between the reader/viewer and reality mediated through science fiction in such a way that the reader/viewer becomes acutely aware of the limited nature of various issues, concepts, and phenomena that constitute reality (114). I adapt Schalk’s concept of “defamiliarization” for my purposes and argue that through disabled Black characters, Kindred: A Graphic Novel Adaptation foregrounds racism as detrimental to health literally and metaphorically. In the graphic novel,

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health and medicine function as a lens through which to understand the harmful nature of racism. Disability has a twofold meaning in neo-slave narratives: it is both a means through which enslavement is depicted as a reasonable act and a condition that describes the state and status of Black Americans during and after slavery (Schalk 2018, 34-35). In other words, disability can literally describe the state of Black characters’ health and figuratively stand for the inequality and injustice that these characters face in a racist society (35). This is exactly the way in which Kindred: A Graphic Novel Adaptation uses disability to explicate the complexity of racism. Having seen Dana’s image where she is in the hospital without an arm (see Fig. 13.14) and then later discovering that when Dana’s story begins she is an able-bodied woman, the reader suspects that an accident or an act of violence will cause disability. Dana loses her arm only towards the end of the graphic novel, after an unsuccessful travel back home (see Fig.  13.15). Dana does not lose her arm because someone has injured her. Yet there are multiple instances in the graphic novel when she is abused and injured because she is a Black woman: she had to pretend to be a slave on the plantation, she was whipped, she was mistreated and humiliated. Moreover, the scene that precedes the moment of Dana’s final return to 1970s California depicts Rufus trying to rape Dana. Dana withstands Rufus, and multiple panels portray the two fighting with each other. In the end, Dana stabs Rufus, killing him. Dana’s travels to the South ultimately cause her disability. Yet there are two ways in which Dana’s disability can be interpreted. On the one hand, she becomes literally disabled, having experienced multiple acts of anti-Black violence. On the other hand, Dana’s disability metaphorically stands for discrimination and injustice that she faces both in the antebellum South and in her present moment. Dana’s arm that remains stuck in the past (see Fig.  13.15) can be interpreted as a link through which America’s slave past is connected to Dana’s present. Through the arm, Dana’s ancestral bond is re-envisioned, too, for Dana exists only because Rufus enslaved and sexually abused Alice. Dana is both the product and the victim of racial oppression, as can be understood through the intricate connection between the past, the present, and the future. Dana is a “mediator” through which the complex history of racism can be perceived (Prorokova-Konrad 2022). Just as Butler’s Kindred reconstructs the linkages between generations of Black Americans and establishes the firm connection to the past (Weinbaum 2019, 117), its graphic adaptation energetically does this, too. The graphic novel does it even more

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Fig. 13.15  Dana returns home from the antebellum South for the last time (p. 234). Kindred: A Graphic Novel Adaptation, by Octavia E. Butler, adapted by Damian Duffy, illustrated by John Jennings (c) Abrams ComicArts

effectively through its visual freedom. Chute (2016) emphasizes: “Through its spatial syntax, comics offers opportunities to place pressure on traditional notions of chronology, linearity, and causality – as well as on the idea that ‘history’ can ever be a closed discourse, or a simply progressive one” (4). Similarly, Krüger-Fürhoff (2020) foregrounds the ability of comics and graphic novels to depict time “spatially,” thus “deviat[ing] from chronological time” (46). The meaning of history is dramatically reimagined through Dana, who is affected by the slave past, having experienced and witnessed racism that her ancestors were both supporters/

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executioners and victims of, and re-envisions her status as a Black woman in 1970s America. Using disabled Black characters to further uncover racism in American society, Kindred: A Graphic Novel Adaptation forces the reader to remember the past in order to re-evaluate the present and, in the end, to question the future. African Americans have been fighting for racial equality and justice for centuries; and “racial progress” is, indeed, the result of an “intergenerational struggle” (Prorokova 2019, 200). Kindred: A Graphic Novel Adaptation is a narrative about the past—slave past and post-Civil-­ Rights-movement past. Even more importantly, it is a narrative about the future. Depicting the centuries-long anti-Black violence, the graphic novel reinforces the problematic, criminal nature of America’s present perceived (Konrad 2022). As we critically engage with our present, we inevitably ask ourselves: What will the future look like? Will everyone have a place in this future? And will the relationship among individuals be established through the principles of justice and equality? These are the questions that we are to address. These are the choices that we have power to make.

Conclusion Visualizing health and medicine, Kindred: A Graphic Novel Adaptation presents racism as a disease that has poisoned American society for centuries. Kindred: A Graphic Novel Adaptation is a pathography through which one can study the harmful effects of racism on groups and individuals. These effects are both literal and metaphorical, for racism not only allowed anti-Black violence but also created conditions in which racial oppression on various levels can be maintained. Through its multiple references to such issues as physical and mental health, the Black body in pain, disability, and healing, the graphic novel foregrounds the pathological nature of racism. It also effectively contrasts medical progress with racial stagnation, thus emphasizing that racism has been a largely neglected disease. While there have been important steps made to facilitate racial justice and equality, racism still must be treated majorly to be eliminated. Williams (2015) accentuates the power of images that portray disease, for through them one can understand the culture of disease (117). Reading Kindred: A Graphic Novel Adaptation as a pathography not only opens a new perspective on racism and its effects on African Americans but also helps understand the ways in which racism can be deconstructed and eradicated.

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Notes 1. In this chapter, I continue to explore the representation of race, racism, and anti-Black violence in the graphic novel that I began in the article “The Legacy of American Slavery: Contesting Blackness and Re-envisioning Nationhood in Kindred: A graphic novel adaptation,” Journal of Perpetrator Research, 5(2) (2022). In press. 2. The allusion to the biblical figure of Hagar, who has a role as a surrogate, helps foreground the crucial role that Hagar plays in the graphic novel, starting Dana’s ancestral line.

References Banner, Olivia. 2019. Introduction: For Impossible Demands. In Teaching Health Humanities, ed. Olivia Banner, Nathan Carlin, and Thomas R.  Cole, 1–15. New York: Oxford University Press. Bleakley, Alan. 2015. Medical Humanities and Medical Education: How the Medical Humanities Can Shape Better Doctors. London: Routledge. Boyd, Kenneth M. 2000. Disease, Illness, Sickness, Health, Healing and Wholeness: Exploring Some Elusive Concepts. Journal of Medical Ethics and Medical Humanities 26 (1): 9–17. https://doi.org/10.1136/mh.26.1.9. Butler, Octavia E., Damian Duffy, and John Jennings. 2017. Kindred: A Graphic Novel Adaptation. New York: Abrams ComicArts. Chute, Hillary L. 2016. Disaster Drawn: Visual Witness, Comics, and Documentary Form. Cambridge: Belknap Press of Harvard University Press. Cole, Thomas R., Nathan S.  Carlin, and Ronald A.  Carson. 2015. Medical Humanities: An Introduction. New York: Cambridge University Press. Dasgupta, Sayantani. 2014. Listening as Freedom: Narrative, Health, and Social Justice. In Health Humanities Reader, ed. Therese Jones, Delese Wear, and Lester D. Friedman, 251–260. New Brunswick: Rutgers University Press. Godfrey, Mollie. 2020. Getting Graphic with Kindred: The Neo-slave Narrative of the Black Lives Matter Movement. In Slavery and the Post-Black Imagination, ed. Bertram D.  Ashe and Ilka Saal, 83–105. Seattle: University of Washington Press. Goldberg, Daniel. 2014. Law’s Hand in Race, Class, and Health Inequities: On the Humanities and the Social Determinants of Health. In Health Humanities Reader, ed. Therese Jones, Delese Wear, and Lester D. Friedman, 268–276. New Brunswick: Rutgers University Press. Hoberman, John. 2012. Black and Blue: The Origins and Consequences of Medical Racism. Berkeley: University of California Press.

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———. 2019. Medical Education and the Challenge of Race. In Teaching Health Humanities, ed. Olivia Banner, Nathan Carlin, and Thomas R. Cole, 111–128. New York: Oxford University Press. Hunsaker Hawkins, Anne. 1999. Reconstructing Illness: Studies in Pathography. West Lafayette: Purdue University Press. Krüger-Fürhoff, Irmela Marei. 2020. Illness Narratives in Comics: Using Graphic Medicine in the Medical Humanities. Wiener klinische Wochenschrift: The Central European Journal of Medicine 132: 44–47. https://doi.org/10.1007/ s00508-­020-­01706-­w. Kumagai, Arno K. 2018. Foreword – at the Coalface: Engaging the Humanities in Medical Education. In Health Humanities in Postgraduate Medical Education: A Handbook to the Heart of Medicine, ed. Allan D.  Peterkin and Anna Skorzewska, ix–xii. New York: Oxford University Press. Neilson, Shane. 2019. The Practice of Metaphor. In Routledge Handbook of the Medical Humanities, ed. Alan Bleakley, 144–154. London: Routledge. Prorokova, Tatiana. 2019. Intergenerational Struggle and Racial Progress in The Help and The Butler. In Southern History on Screen: Race and Rights, 1976-2016, ed. Bryan M. Jack, 199–209. Lexington: University Press of Kentucky. Prorokova, Tatiana, and Nimrod Tal. 2018. Introduction. In Cultures of War in Graphic Novels: Violence, Trauma, and Memory, ed. Tatiana Prorokova and Nimrod Tal, 1–19. New Brunswick: Rutgers University Press. Konrad, Tatiana. 2022. The Legacy of American Slavery: Contesting Blackness and Re-envisioning Nationhood in Kindred: A Graphic Novel Adaptation. Journal of Perpetrator Research 5 (2). In press. Schalk, Sami. 2018. Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction. Durham: Duke University Press. Skorzewska, Anna, and Allan D. Peterkin. 2018. Why are the Health Humanities Relevant (and Vital) in Postgraduate Medical Education? In Health Humanities in Postgraduate Medical Education: A Handbook to the Heart of Medicine, ed. Allan D.  Peterkin and Anna Skorzewska, 1–20. New  York: Oxford University Press. von Egelhardt, Dietrich. 2020. Medical Humanities or Therapy as Art  – Art as Therapy. Wiener klinische Wochenschrift: The Central European Journal of Medicine 132: 4–7. https://doi.org/10.1007/s00508-­020-­01706-­w. Washington, Harriet A. 2006. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Harlem Moon. Weinbaum, Alys Eve. 2019. The Afterlife of Reproductive Slavery: Biocapitalism and Black Feminism’s Philosophy of History. Durham: Duke University Press. Williams, Ian C.M. 2012. Graphic Medicine: Comics as Medical Narrative. Medical Humanities 38 (1): 21–27. https://doi.org/10.1136/ medhum-­2011-­010093.

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Williams, Ian. 2014. Graphic Medicine: The Portrayal of Illness in Underground and Autobiographical Comics. In Medicine, Health and the Arts: Approaches to the Medical Humanities, ed. Victoria Bates, Alan Bleakley, and Sam Goodman, 64–84. London: Routledge. ———. 2015. Comics and the Iconography of Illness. In Graphic Medicine Manifesto, ed. M.K.  Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith, 115–142. University Park: Penn State University Press. Wohlmann, Anita. 2019a. Analyzing Metaphors. In Research Methods in Health Humanities, ed. Craig M. Klugman and Erin Gentry Lamb, 25–38. New York: Oxford University Press. ———. 2019b. Metaphor as Art: A Thought Experiment. In Routledge Handbook of the Medical Humanities, ed. Alan Bleakley, 136–143. London: Routledge. Yazell, Bryan. 2020. Teaching Octavia Butler’s Diverse Body of Speculative Fiction: Genre, Race and the Radical Imaginary. In Teaching Girls on Fire: Essays on Dystopian Young Adult Literature in the Classroom, ed. Sarah Hentges and Sean P. Connors, 154–170. Jefferson: McFarland. Tatiana Konrad  is a postdoctoral researcher at the Department of English and American Studies, University of Vienna, Austria. She is the author of Docu-Fictions of War: U.S. Interventionism in Film and Literature (2019), the editor of Cold War II: Hollywood’s Renewed Obsession with Russia (2020) and Transportation and the Culture of Climate Change: Accelerating Ride to Global Crisis (2020), and a co-editor of Cultures of War in Graphic Novels: Violence, Trauma, and Memory (2018).

Index1

A Ableism, 3, 7, 9, 19, 103, 109, 175–188, 200, 201 Abortion, 21, 22, 24, 26–29, 31, 34, 35 Abortion debate, 22 Abrams, Brian, 3 Accelerated Mobile Pages (AMP), 268, 277, 278 Activism, 17, 52, 79, 201, 250 Actor-Network Theory, 12, 248–251, 254 Adolescents, 82, 129, 144, 266, 271 Adults, 21, 77, 89, 95, 129, 130, 197, 211, 215, 227, 238 Aesthetics, 9, 84, 107, 165, 180–183, 187, 294, 299 Affective labour, 76, 95, 97n1 Affordance, 267, 268, 272, 275, 277, 278

Africa, 224, 225, 227, 230, 231, 236 African, 8, 12, 130–132, 223, 225, 229, 231–233 African Americans, 68n3, 271, 287, 290–291, 293, 303, 305, 315 African disability discourse, 225, 228 Agamben, Giorgio, 12, 252, 254, 257, 259 Agency, 22, 33, 79, 90–94, 125, 126, 130, 133, 142, 156, 162, 195–197, 202, 203, 208, 252 AIDS, 53, 79, 271 Alzheimer’s, 129 Antebellum US, 288, 291–294, 298, 302, 310, 312–314 Anti-Black violence, 288, 292–294, 298, 303, 309, 310, 313, 315, 316n1 Anti-capitalism, 217n1

 Note: Page numbers followed by ‘n’ refer to notes.

1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. Riegel, K. M. Robinson (eds.), Health Humanities in Application, Sustainable Development Goals Series, https://doi.org/10.1007/978-3-031-08360-0

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INDEX

Anxiety, 76, 78, 87, 90, 96, 97n1, 113, 129, 289 Application, 1, 20, 44, 46, 55, 65, 95–96, 105, 170, 175–178, 197, 202, 225, 250, 269, 278 Archive, 9, 76–78, 84, 85, 89, 96 Art/arts, 1–5, 7–11, 20, 33, 36, 48, 50, 76–79, 81–89, 91–96, 103, 105, 108, 115, 124, 125, 127, 135, 137–140, 142, 145, 153, 155, 160, 170, 180, 182–184, 186–188, 197, 199, 225, 241, 249, 250 Art creation, 175–188 Art creation tools, 181, 183, 184 Art education, 5, 9, 76 Artistic mapping, 78 Artists, 2, 5, 7, 9, 11, 77–79, 81–84, 87, 91–93, 95, 103, 105, 107, 128, 140, 142, 144, 183, 186, 187, 196–198, 203, 208, 211 Art-making, 9, 11, 78, 96, 185–188 Art repository, 83 Arts-based healing, 10, 153, 170 Arts-based knowing, 10, 153 Arts-based research methods, 17–36 Arts, community-based, 196, 197 Art therapy, 79 Artwork, 77, 79, 81, 82, 84, 86–89, 91, 95, 106, 116 Assemblages, 249, 250, 253 Astraea Lesbian Foundation for Justice, 62 Attention Economy, 154, 169 Audience, 18, 20, 22, 23, 28, 29, 32, 36, 50, 94, 137, 140, 141, 144, 186, 196, 198–199, 202, 203, 206, 210, 211, 216, 266, 267, 270, 276 B Baartman, Sarah, 57 Baker, Charley, 3

Banner, Olivia, 4, 46, 176, 288 Bari, Shahidha, 62 Bates, Victoria, 3 Baudrillard, Jean, 253 Big Data, 154 Biocultures, 5 Bioethics, 4, 5, 9, 59, 76, 87–89, 91–94 Biomedical ethics, 48, 49, 55, 58 Biosocial identity, 227 Bipolar disorder, 226 Black Death, 247, 252 Black feminism, 45 Black Feminist Thought, 28 Blame, 201, 224, 308 Bleakley, Alan, 199, 266, 291 Bodies, 9, 10, 12, 18, 20, 29, 32, 56, 58–61, 63, 82, 84, 88, 95, 104–110, 113–119, 124, 125, 127, 129–133, 136–143, 145, 154, 155, 158–163, 166–169, 185, 206, 211, 224, 226, 228, 230, 231, 233, 248–250, 252–259, 289, 293, 294, 298, 299, 302, 303, 308, 310–315 Bodies, dead, 12, 249, 252, 253, 257, 259, 302 Brown, Brian, 3, 7 Buddhist dance, 137 Butler, Octavia E., 287, 292, 295–297, 299–311, 313, 314 C Campbell, Fiona Kumari, 185, 186 Canada Foundation for Innovation (CFI), 181, 188 Caryānṛtya, 134–139 Cat’s cradling, 154, 156, 170 Charise, Andrea, 7, 17, 18, 178, 188, 200 Charon, Rita, 6, 58, 138, 142, 270

 INDEX 

Children, 51, 80, 82, 89, 95, 96, 144, 204–210, 227, 230, 231, 271, 292, 302, 309 Chronic health conditions, 185 Citizenship, 11, 223–225, 232, 233, 236–241 Citizenship, economic, 238–240 Citizenship, social, 236–238 Clare, Eli, 181, 184, 188 Clients, 21, 22, 26, 124, 195, 196, 198, 202, 203, 205 Clinical, 1, 2, 6, 10, 13, 18, 20, 21, 32, 35, 36, 124–129, 132–134, 138, 142, 145, 199, 205, 250, 270 Cognition, 159, 181, 273 Cognitive load, 274 Cognitive psychology, 5, 180, 181 Cole, Thomas R., 288 Collaboration, 11, 45, 64, 130, 145, 180, 181, 195–217 Collaborators, 196 Collective healing, 81–82, 84, 96, 137 Collective liberation, 201, 217n1 College, 50, 83, 90, 93 Communities, 3, 4, 7, 11, 13, 22, 28, 32, 45, 47–49, 51, 54, 56, 61–64, 82, 84, 86, 90–94, 104, 117, 119, 124–133, 137, 139, 142, 143, 145, 176, 177, 181, 183, 184, 186, 188, 196–198, 200, 201, 203, 205, 208, 217, 225, 236, 237, 240, 259, 266, 271 Compassion, 76, 88, 90, 91, 110, 259 Conocimientos, 18 Contemporary Art, 84 Content-based learning, 91 Coping mechanism, 82, 91 Coronavirus, 9, 248–250, 252, 253, 258, 263, 269 Course design, 64–65

321

COVID-19, 9, 12, 44, 47, 51–53, 68n3, 68n5, 75–96, 127, 247–250, 253–259, 266, 268, 269, 271 COVID-19 Cartography, 78, 80 Crawford, Paul, 2–4, 6, 7, 13, 119, 153, 170, 175–177, 179, 199, 200, 224, 228, 241, 249, 250, 266, 269, 288 Creative exploration, 195 Creative expression, 76, 77, 82, 128, 154 Creative writing, 9, 76, 89, 91, 92, 94, 96 Crenshaw, Kimberly, 19, 52, 53 Critical health humanities, 44, 50, 65, 248 Culture, 3, 12, 13, 19, 21, 46, 48–50, 55, 60, 85, 89, 107, 109, 116, 125–127, 130, 131, 133, 143, 145, 157, 179, 223, 224, 229, 232, 235, 252, 289, 315 D Dance, 5, 10, 123–145, 153–170 Dance, embodied, 10, 153–170 Danza, 131 Data visualisation, 182 Death, 51, 54, 60, 68n2, 68n3, 79, 83, 123, 127, 197, 231, 248, 249, 252–254, 257, 259, 266, 289, 291, 293, 303, 308 Debord, Guy, 253 Deleuze, Gilles, 12, 249–251, 253, 254 Depression, 76, 90, 96, 129, 143, 241 Desires, 19, 80, 83, 86, 88, 96, 107, 113, 117, 136 Dialogue, 12, 84, 85, 93, 96, 143, 155, 188, 198, 249, 257, 266, 270

322 

INDEX

Diaspora, 54, 130, 141 Digital, 5, 53, 55, 62, 81, 84, 87, 96, 180, 181, 185–187, 204, 248, 271 Digital archive, 78 Digital art, 83, 180 Digital pedagogy, 77 Digital space, 248, 253 Disabilities, complex, 195, 196 Disability, deficit-driven, 202 Disability/disabilities, 3, 7, 9, 11, 48, 57–58, 103, 106, 110–112, 116, 117, 175–188, 195–217, 289, 311, 313, 315 Disability justice, 196, 199–202, 210, 211, 217n1 Disability, moral/religious model, 229–232 Disability, religious model, 227–232 Disability, social model, 226, 229, 237, 239, 240 Disability studies, 2, 5, 6, 11, 55, 180, 205, 225 Discrimination, 133, 185, 236, 291, 305, 312, 313 Disease, 12, 13, 59–60, 69n8, 127, 135, 137, 144, 179, 224, 226, 230, 247–250, 252, 254, 259, 260, 287–315 Diseases, infectious, 247, 252 Diversity, 4, 5, 10, 33, 35, 45, 49–51, 95, 125, 133, 143, 224, 312 Domains of power, 19 Domains of power, disciplinary, 19 Duffy, Damian, 287, 295–297, 299–302, 304, 306, 307, 309, 311, 314 Dying, 53, 54 E Ecologies of attention, 154, 169 Educators, 2, 4, 6, 7, 11, 13, 20, 35, 36, 76, 78, 95, 176

Embodied dance practice, 10, 153–170 Emotional wellbeing, 78 Empowerment, 79, 126, 278 Encapsulation, 12, 265–279 Environment, 27, 35, 47, 63, 85, 88, 90, 96, 114, 118, 125, 130, 131, 215, 226–228, 239, 274, 289 Epistemology, 11, 160, 176, 182, 183, 187, 223–225, 229, 235, 236, 240, 241 Ethics, 6, 7, 9, 20, 48, 49, 54–59, 95, 291 Ethnic minority communities, 50 Experiential health information, 265, 266, 276, 279 Expertise, 89, 119, 133, 144, 178, 180, 183, 188, 195–217, 228, 249 Eye tracking, 10, 144, 175–188 F Facebook, 247–260, 266 Families, 50, 51, 197, 201, 216, 228, 230, 236, 237, 252, 292 Fear, 58, 59, 76, 79, 81, 84, 86–88, 96, 207, 236, 238, 240, 248 Feminist health humanities, 8, 44–49, 51–55, 57, 65 Ferguson, Laura, 106, 107, 109 Field, 2–7, 10, 12, 13, 44, 46, 47, 55, 56, 61, 76, 89, 106, 116, 117, 119, 124, 127, 145, 170, 175–178, 180, 184, 188, 195–217, 224, 225, 249, 250, 266, 269, 288, 289 Fiser, Karen, 107 Floyd, George, 51, 68n3 Foetal Alcohol Spectrum Disorder (FASD), 195–199, 201–208, 210, 211, 216 Food, 53, 85–87

 INDEX 

Foucault, Michel, 233, 253 Frank, Arthur, 176, 200, 201 Freedom, 45, 63, 88, 310, 314 Friedman, Lester D., 2, 176, 186 Friere, Paolo, 55 Frodeman, Robert, 177–179 G Gallery, 76–81, 83, 85–87, 89, 91, 92, 94–96 Gender, 2, 5, 19, 21, 25, 34, 44–65, 76, 82, 131, 141, 142, 200, 254, 291, 312 Ghana, 11, 12, 223, 230–233, 235–240 Global health humanities, 12 Global North, 11, 224 Global South, 11, 59 Gold, Jonathan, 138 Goodman, Sam, 3 Google Docs, 77 Graphic medicine, 7, 12, 13, 265–279, 294 Graphic novel, 13, 271, 287–294, 298, 299, 303, 305, 308–315 Gravendyk, Hillary, 105 Grief, 76 Grocery, 75, 87 Guatemala, 59 Guattari, Felix, 12, 249–251, 253, 254 Gynecology, 56, 57 H Hammonds, Evelynn, 46 Hardware engineering, 180 Hawkins, Anne Hunsaker, 176, 270, 293 Healing, 10, 62–63, 65, 79, 81–82, 84, 89, 90, 96, 109, 111, 119,

323

131, 137–139, 145, 153–170, 184, 230, 250, 289, 300, 315 Health, 1–5, 17–36, 115, 153, 175, 184, 196, 249, 266, 287–315 Health and social justice training, 45 Healthcare, 2–4, 7, 11, 12, 18, 20, 21, 27, 28, 30, 33, 34, 36, 45, 46, 53, 57, 58, 61, 62, 124, 126–133, 138, 139, 143, 227, 228, 250, 266, 269, 270, 278, 288 Healthcare careers, 27 Health careers, 46, 48 Healthcare providers, 2, 10, 12, 21, 35 Health disparities, 48, 49, 53 Health humanities, 1, 17–19, 32, 34, 35, 44–65, 69n8, 76, 77, 82, 89, 92, 95–96, 105, 107, 119, 124, 125, 132–133, 153, 170, 175–188, 196, 199–203, 210, 211, 224, 225, 228–229, 248–250, 254, 266, 269–273, 287–291 Health inequities, 24, 29, 30, 32–35, 49 Health justice, 8, 44–48, 64 Health professions, 10, 63 Health sciences, 8, 17, 18, 22, 25, 32, 35, 36, 144, 153 Health sector, 197 Health writing, 289 Hidden curriculum, 50 Hierarchies, social, 196 Historical narratives, 77, 96 HIV, 79 Hoarding, 87 Holistic healing, 131 hooks, bell, 18, 47, 51, 55, 68n1, 68n2 Hope, 44, 53–55, 78, 83, 86, 88, 96, 106, 116, 196 HoSang, Daniel, 53

324 

INDEX

Human connectivity, 81 Human flourishing, 76, 96 Humanities, 1–9, 33, 35, 36, 76, 95, 96, 142, 153, 170, 175–178, 180–185, 187, 197, 199, 203, 225, 231, 249, 250, 258, 288, 289, 291 Human potentials, 84 Hybrid pedagogy, 80–81 I Ifeobu, Ikem, 12, 225 Illness, 2, 3, 13, 48, 49, 54, 57–60, 78, 79, 105, 117, 124, 128, 131, 132, 136, 141, 143–145, 176, 200, 201, 224, 228, 232, 241, 250, 270, 288–290, 293, 294, 310 IMPACT Lab, 180, 181 ImprovEnabled, 195–197, 211 Improvisation, 195–198, 202–204, 208, 210, 211, 216, 217 Improvisation games, 195, 196 Indian context, 248, 254 Infectious, 247, 248, 252, 258 In-person pedagogy, 80–81 In-person teaching, 77 Institutional Review Board (IRB), 25 Interdependence, 217n1 Interdisciplinarity, 175–188, 249 Intersectional, 8, 18–20, 26, 30–33, 36, 48, 52, 53, 68n3, 126, 200 Intersectional analysis, 8, 17, 21, 24, 30, 32, 46, 49 Intersectional feminism, 8, 44 Intersectionality, 18–20, 24, 25, 27, 36, 45, 52, 65, 90, 95, 200, 217n1 Intersectional oppressions, 18 Intersections, 2–6, 8, 11, 13, 33, 62, 84, 92, 107, 140, 175, 178, 185, 203, 270, 276, 277

Interventions, 9, 19, 20, 50, 65, 124, 127, 129, 133, 155, 176, 184, 196, 197, 200–202, 204, 208, 229, 269, 289 Isolation, 9, 53, 76, 82, 84, 85, 90, 94, 110, 142, 196, 197, 203, 237, 250 J Jennings, John, 287, 295–297, 299–302, 304, 306, 307, 309, 311, 314 Johnson, Merri L., 117, 118, 273 Jones, Therese, 4, 5, 32, 145, 176, 269 Judeo-Christian models, 229, 230 Jung, Carl, 250, 251 K K-6, 78 K-12, 24, 83, 97n3 K-16, 9, 77, 78 Kathmandu valley, 134–139 Kitada, Makoto, 135, 136, 139 Klein, Julie Thompson, 180 Klugman, Craig M., 2, 4, 176, 177, 180, 199 Knowledge sharing, 91, 177 Konkomba, 11, 223, 232–234, 237 Konkomba people, 235 Kumagai, Arno, 21, 33, 45, 65, 288 L Lacks, Henrietta, 57 Lamb, Erin Gentry, 2, 4, 176, 177, 180, 199 Latour, Bruno, 12, 248–252, 254 Lau, Travis, 106–110, 112, 117 Law & Social Thought, 44, 64

 INDEX 

Learning objectives, 50, 91 Learning resources, 45 Lessons, 53, 77–81, 97n3, 116, 208, 209, 211, 216 LGBTQ, 48, 61, 142, 145 Liberatory education, 51 Limited mobility, 11, 180, 181, 183, 185 Linguistic challenges, 232–236 Lippincott, Rachel, 113 Literary studies, 1, 5, 6, 142, 176, 180, 181, 187 Lived experience, 10, 63, 90, 105, 119, 154, 155, 159–162, 165, 167–169, 200, 201, 206, 207, 228 London Plague, 252 Lorde, Audre, 46, 57, 58, 68n1, 200 Low, John Mac, 182, 225 M Macedo, Donaldo, 55 Machi, 131 Maps, 24, 28, 78, 80, 84, 276, 277 Mapuche, 131, 132 Marginalization, 79, 201, 227, 236, 291 Matrix of Domination, 19, 27 McRuer, Robert, 117, 118 Medical humanities, 2–6, 13, 76, 124–126, 145, 170, 176, 199, 288 Medical knowledge, 288, 292, 294, 305, 308 Medical progress, 13, 287–315 Medical racism, 291, 305 Medicine, 2–4, 6–8, 10, 12, 13, 20, 21, 33, 45, 48, 54, 56–60, 63, 78, 123–145, 154, 184, 265–279, 287–294, 305, 306, 308–310, 313, 315 Mental health, 3, 26, 57, 79, 81, 82, 85, 124, 127, 129, 130, 143,

325

144, 155, 241, 271, 293, 294, 303, 310, 315 Mental models, 273–275, 278 Metaphor, 107, 159, 290 Middle Ages, 252 Midwest US, 44, 55 Mipham, Jamgön, 135, 136 Modi, Narendra, 257–259 Multimodality, 165 Myers, Christiana, 110 N Naidu, Thirusha, 45 Narrative medicine, 6, 57–58, 124, 126, 136–139, 141, 142, 270 Narratives, 3, 12, 13, 19, 59, 75–96, 103–119, 138, 139, 141–143, 145, 183, 198, 200, 201, 248, 253, 254, 257, 259, 266, 268–275, 278, 288–290, 294, 313, 315 Narrative structure, 12, 272–276, 278 Nearpod, 77 Necropolitics, 252, 258 Needs, 2, 3, 6, 9, 10, 12, 18, 22, 32, 34, 35, 44, 45, 50, 52, 62, 64, 65, 76, 82, 83, 85–88, 96, 97n1, 112, 113, 115, 118, 119, 126, 129, 130, 133, 162, 179, 185, 186, 188, 207, 208, 210, 215, 225, 229, 240, 255, 292, 294, 298, 303, 304, 311 Neoliberalism, 17 Nepal, 10, 134–139 Network, 5, 6, 12, 185, 248–254, 267 Network, interactive, 248 Neurodivergent, 199, 210 New York, 81 Nguillatún, 131, 132 Non-artists, 78, 89 Normalcy, 46, 80, 228

326 

INDEX

O Online gallery, 78, 87 Outsider art, 77 P Page, Cara, 63, 65 Pain studies, 109 Pandemic, 9, 12, 44, 47, 51–53, 62, 63, 68n3, 68n5, 75–96, 247–249, 252, 257 Pandemic life, 80, 92 Pandemic pedagogy, 78–82, 90–93 Pandemic Poetry Slam, 92, 94 Panels, 52, 53, 269, 271–278, 293, 313 Panic, 87, 197 Parity, 265–279 Park, Lisa, 183 Parkinson’s, 129 Paternalism, 200, 205–210 Pathography/pathorgraphies, 13, 176, 270, 287, 292, 315 Patient, 2, 10, 12, 21, 26–29, 31–33, 36, 58, 105, 106, 116, 119, 125–128, 131–133, 138, 141–145, 176, 200, 224, 228, 254–259, 266, 269–271, 288–291, 305 Patsavas, Alyson, 105, 106, 111, 112, 118, 119 Pedagogical practices, 196 Pedagogy, 5, 7, 18, 46–47, 50, 51, 53–55, 63, 65, 68n1, 77–89, 95, 96, 144, 208, 209 Performative research methods, 18 Personal Protective Equipment (PPE), 257 Personhood, 12, 31, 224, 225, 232, 233, 237, 241, 252, 253 Phenomenological research practice, 155–160, 170

Phenomenologies, performative, 155–157, 160, 170 Phenomenology, 138, 154, 156, 159, 160, 162, 163, 170 Plague of Justinian, 247, 252 Poetics, 94, 107, 119, 140, 143, 177, 181 Politics, Indian, 247–260 Posthuman, 248, 250 Praxis, 17, 18, 29, 33, 36, 46, 56, 155, 157, 170 Predominantly White Institutions (PWI), 18 Pregnancy, 22, 26, 199, 201, 266 Pregnant, 32, 201 Privilege, 8, 10, 20, 45, 62, 106, 169, 202, 228, 290, 305 Pro-choice, 22, 30–31 Pro-life, 22, 29–32 Public health, 12, 24, 52, 54, 55, 68n7, 93, 124, 126, 132, 180, 184, 200, 241, 270 Q Qualitative research methods, 22 R Racialized, 32, 34, 48 Racial minorities, 50, 142 Racial oppression, 288, 292, 293, 310, 313, 315 Racial resentment, 34 Racial segregation, 18 Racism, chronic disease, 287–315 Reality, 29, 53, 77, 85–87, 89, 96, 105, 107, 118, 140, 154, 201, 236, 253, 312 Reconfiguration, 196 Rehabilitation, 228, 229

 INDEX 

Reproductive health, 6, 8, 21–30, 32–36 Reproductive health policy in the US, 8, 17, 18, 30 Reproductive justice, 25 Reproductive oppression, 31–34, 36 Research design, 11, 208 Research practices, 155–164, 170, 180 Restrictive health policies, 18, 30, 31, 33 Rhizomes, 12, 250, 251, 254 Riegel, Christian, 176, 181–183, 185, 186 River Ganga, 257 Role-playing, 21 Rural, 223, 231, 237 S Safe space, 35, 119, 129, 132, 142 Scholarship of teaching and learning (SOTL), 24 Science, Technology, Engineering, and Mathematics (STEM), 18, 35 Self-care, 48, 62–63, 289 Sexual health, 8, 21, 23, 24, 26, 28, 30, 32 Shakespeare, William, 182 Shame, 201 Sins Invalid, 103, 118, 200, 201 Slavery, 56, 291, 292, 294, 298, 303, 310, 313 Social media platforms, 12, 154, 169, 249, 257, 258, 265–269, 278 Social science research methodologies, 180 Social Sciences and Humanities Research Council of Canada (SSHRC), 183 Sociodrama, 29, 32

327

Software engineering, 180 Solidarity, 54, 130, 217n1 Space invaders, 36 Spargo, Clifton R., 7 Sustainability, 85–87, 89, 217n1 T Technology, 7, 64, 77, 108, 111, 119, 154, 169, 176, 180–188, 251, 253, 266, 269 Technology development, 180, 181, 187, 188 Tentacular worlding, 10, 153–170 Thanatopolitics, 252 Tischler, Victoria, 3 Toolkit, 196, 198, 202–204, 208, 211, 216 U United Nations (UN), 85, 226 User experience, 181, 186 V Veasey, Kristina, 187 Visualizing health, 315 W Wear, Delese, 2, 33, 176 Well-being, 1–3, 6–8, 17, 45, 46, 48, 54, 57, 62, 63, 76, 90, 96, 97n1, 116, 119, 129, 130, 135, 139, 154, 170, 224, 225, 229, 238, 240, 241, 249, 257–259, 266, 269, 293 White fragility, 34 Whitehead, Anne, 3 White privilege, 216

328 

INDEX

Wittgenstein, Ludwig, 5–7 Women of Colour (WoC), 18, 19, 22, 36, 53 Woods, Angela, 3, 65 Workers, 28, 53, 59, 195–197, 202, 203, 258, 266

World Health Organization (WHO), 53, 130, 224–227, 236, 238, 239, 249, 293 X Xiong, Jody, 183