PathoGraphics: Narrative, Aesthetics, Contention, Community 9780271087337

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PathoGraphics

Susan Merrill Squier and Ian Williams, General Editors Editorial Collective MK Czerwiec (Northwestern University) Michael J. Green (Penn State College of Medicine) Kimberly R. Myers (Penn State College of Medicine) Scott T. Smith (Penn State University) Books in the Graphic Medicine series are inspired by a growing awareness of the value of comics as an important resource for communicating about a range of issues broadly termed “medical.” For health care practitioners, patients, families, and caregivers dealing with illness and disability, graphic narrative enlightens complicated or difficult experience. For scholars in literary, cultural, and comics studies, the genre articulates a complex and powerful analysis of illness, medicine, and disability and a rethinking of the boundaries of “health.” The series includes original comics from artists and non-artists alike, such as self-reflective “graphic pathographies” or comics used in medical training and education, as well as monographic studies and edited collections from scholars, practitioners, and medical educators.

Other titles in the series: MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith, Graphic Medicine Manifesto Ian Williams, The Bad Doctor: The Troubled Life and Times of Dr. Iwan James Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s Aneurin Wright, Things to Do in a Retirement Home Trailer Park: . . . When You’re 29 and Unemployed Dana Walrath, Aliceheimers: Alzheimer’s Through the Looking Glass Lorenzo Servitje and Sherryl Vint, eds., The Walking Med: Zombies and the Medical Image Henny Beaumont, Hole in the Heart: Bringing Up Beth MK Czerwiec, Taking Turns: Stories from HIV/AIDS Care Unit 371 Paula Knight, The Facts of Life Gareth Brookes, A Thousand Coloured Castles Jenell Johnson, ed., Graphic Reproduction: A Comics Anthology Olivier Kugler, Escaping Wars and Waves: Encounters with Syrian Refugees Judith Margolis, Life Support: Invitation to Prayer Ian Williams, The Lady Doctor Sarah Lightman, The Book of Sarah Benjamin Dix and Lindsay Pollock, Vanni: A Family’s Struggle Through the Sri Lankan Conflict Ephameron, Us Two Together Scott T. Smith and José Alaniz, eds., Uncanny Bodies: Superhero Comics and Disability MK Czerwiec, ed., Menopause: A Comic Treatment Swann Meralli and Deloupy, Algériennes: The Forgotten Women of the Algerian Revolution Aurélien Ducoudray and Jeff Pourquié, The Third Population

Narrative, Aesthetics, Contention, Community

Edited by Susan Merrill Squier and Irmela Marei Krüger-Fürhoff

The Pennsylvania State University Press University Park, Pennsylvania

Copyright © 2020 We thank the Einstein Foundation Berlin for

The Pennsylvania State University

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member of the Association of University Presses.

Data It is the policy of The Pennsylvania State Names: Squier, Susan Merrill, editor. | KrügerFürhoff, Irmela Marei, 1965– editor. Title: Patho graphics : narrative, aesthetics,

University Press to use acid-free paper. Publications on uncoated stock satisfy the minimum requirements of American National

contention, community / edited by Susan

Standard for Information Sciences—Permanence

Merrill Squier and Irmela Marei Krüger-

of Paper for Printed Library Material, ansi z39.48–

Fürhoff.

1992.

Other titles: PathoGraphics | Graphic medicine. Description: University Park, Pennsylvania : The Pennsylvania State University Press, [2020] | Series: Graphic medicine | Includes bibliographical references and index. Summary: “A collection of essays exploring how fiction, life-writing, and comics portray illness, medical treatment, and disability”— Provided by publisher. Identifiers: LCCN 2019059724 | ISBN 9780271086170 (hardback ; alk. paper) | ISBN 9780271086187 (paperback ; alk. paper) Subjects: MESH: Narrative Medicine | Medicine in Literature | Medicine in the Arts | Graphic Novels as Topic Classification: LCC R727.3 | NLM WB 102 | DDC 610.69/6—dc23 LC record available at https://lccn.loc.gov /2019059724

contents Introduction (1) Susan Merrill Squier and Irmela Marei Krüger-Fürhoff

1 The Reflecting Physician (7) Einat Avrahami

2 Assembling a Shared Life in Anders Nilsen’s Don’t Go Where I Can’t Follow ( 23 ) Tahneer Oksman

3 Ways of Looking: Reading PathoGraphics ( 39 ) Nina Schmidt

4 The Comics Pain Scale and Comics About Pain ( 59 ) Ariela Freedman

5 The Tightrope to Equilibrium: Parkinson’s Disease in Literature and Comics ( 74 ) Irmela Marei Krüger-Fürhoff

6 “Her Leg”: Chris Ware’s Body of Work ( 100 ) Rieke Jordan

7 Crafting Psychiatric Contention Through Single-Panel Cartoons ( 115 ) Helen Spandler

8 Subverting Stigma: Community Building in Serial Comics ( 135 ) Leah Misemer

9 Psychosis Blues: Schizophrenia, Comics, and Collaboration ( 153 ) Elizabeth J. Donaldson

10 The Quickening ( 173 ) stef lenk

11 Interview with stef lenk on The Quickening ( 178 ) Irmela Marei Krüger-Fürhoff and Susan Merrill Squier

12 Desire Paths: PathoGraphics and Transgenerational Trauma ( 187 ) Maureen Burdock

13 Scaling Graphic Medicine: The Porous Pathography, a New Kind of Illness Narrative ( 205 ) Susan Merrill Squier

List of Contributors ( 227)

Index ( 231 )

Introduction Susan Merrill Squier and Irmela Marei Krüger-Fürhoff

Comics studies, life writing studies, and literary studies are all crucial sites for the exploration of pain and suffering. Works of fiction addressing the impact of an illness or a disability, autobiographies and memoirs exploring an experience of medical treatment, and comics in the genre of “graphic medicine” that speak of illness or disability from the perspective of a patient, family member, or caregiver: all of these narratives forge a specific aesthetic in order to communicate their understanding of the human condition. Yet these creative fields are customarily held apart from each other. They are explored in different sectors of the academy or the public, they speak to separate audiences, and though they pursue goals that are allied, their contributions have not traditionally been put in conversation with one another.

The essays in this book demonstrate what can emerge when scholars and

artists interested in fiction, life writing, and comics come together to explore how their media portray illness, medical treatment, and disability. Rather than stopping at the limits of genre or medium, they talk across fields, exploring together how works in these different forms craft narrative and aesthetics to build community and contention around those experiences and to discover how the knowledge and experiences of illness and disability circulate within the realms of medicine, art, the personal, and the cultural.

Illness and disability are very personal matters: they are located in indi-

vidual bodies, connected to specific life stories, and may even be difficult to communicate, as in the cases of pain or grief. At the same time, they are always experienced in social contexts and shaped by cultural and historical frameworks: they are lived in the presence of family members, friends, and a (benevolent or disinterested) public; in the midst of institutions such as the private home, the

workplace, the clinic, or the legal and health care regulations of a specific country; and they are formed by cultural expectations that they might affirm or seek to critique and transform. Ill/disabled lives—that is, all our lives, which are and 2

will be subject to vulnerability and mortality—thus have far-reaching cultural implications and political repercussions.

In titling this conversation PathoGraphics, we pay homage to that vulnerability,

returning to two ancient root words, pathos and graphe¯. Pathos is, at its origins, a complex amalgam of suffering and experience. In addition, it is a set of rhetorical strategies: the use of storytelling, metaphor, passionate emotion, and performance to engage an audience. Pathos also refers to the idea that every culture has a shared set of expressions to articulate, make sense of, and convey experiences of suffering. These embodied, sometimes verbal but more often visual expressions are culture specific but often work across long periods of time. As pathos formula (Aby Warburg), iconographies of illness (Sander Gilman), or dictionaries of gestures (Will Eisner), they remind us of a shared human condition of vulnerability, and also of the power of art to convey, critique, or cope with this condition.1 Along these lines, pathos might even serve as a common ground for political activity and community building.2

Over the years the term pathos has acquired a fraught legacy to which we

also gesture: the medical category of the pathological and its discursive offshoot, pathography, first-person accounts of disease, illness, and medical treatment.3 Disability communities now contest the very distinction between the normal and the pathological, and so, too, a new attention to health has joined, or even replaced, the focus on medicine. The health humanities, in particular, require us to acknowledge the various ways in which social injustices infuse our notions of illness, disability, treatment, and caregiving.4 We intend our use of patho to invoke not just the original meaning of the term but also its present contestation, which resists a narrow focus on pathology in order to plumb the experiences of vulnerability and pain that we share.

W. J. T. Mitchell used the typographic convention of the slash, as in “image/

text,” to emphasize the problematic gap, cleavage, or rupture in representation.5 From the earliest days of graphic medicine, the term medicine was equally the site of a debate rather than an institutional marker. The same problematizing perspective was evident when, in announcing its incorporation in 2018, the Graphic Medicine Collective stressed its commitment to challenging its key terms, graphic and medicine, by resisting associations that link the graphic line to the [porno] graphic image and refusing to limit illness to the individual body and healing to the zone of clinical medicine.6 In a similar vein, we in PathoGraphics—a 2016– 21 international research project based at Freie Universität Berlin, Germany, and funded by the Einstein Foundation Berlin7—also intend the typographical interruption of case between our titular terms to mark the dual premises of our work. For us, the term pathography—a written, nonfiction narrative of illness—not only

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obscures the acts of fictive creation that are integral to every piece of life writing but also carries assumptions of human-centered individuality that must be questioned. We also believe that important ambiguities are inherent in the term graphics, which evokes both graphe¯ (“I draw”) and its Derridean legacy graphein, the trace or the written word, and mingles the notion of explicit or shocking representation with the art of design. The two graphic endeavors embodied in our title term, PathoGraphics, thus seek to carve out the similarities of written and drawn illness stories in literature and comics without ignoring their mediaspecific, site-specific, or species-specific qualities.

Inspired by Graphic Medicine’s attention to the connection between image

and text in comic pathographies, our project in PathoGraphics is to fold into that rich mix an attention to the textual pathography embodied expansively in both literature and life writing. The core of our project, which we conceive of as proceeding in harmony with similar initiatives in Graphic Medicine but with a broader remit to speak to the fields of literature and life writing, is, first, to challenge any simple opposition between word and image, an opposition that has historically obscured a broadly shared project of using narrative and aesthetics to serve engagement and activism around the issue of human suffering and pain, and, second, to probe the unexamined assumptions that have narrowed the concept of pathos, or pain, and graphe¯/graphein to the human individual.

The essays herein are written for scholars in disability studies, literary stud-

ies, autobiography and life writing studies, medical and health humanities, and comics studies; for activists, patients, and patient advocates; for health care practitioners and for students, whether they aim to be future health care professionals or hope merely to become knowledgeable health care “consumers.” They incorporate a variety of analytic strategies, from close reading and textual and visual history to studies of circulation, practice, production, and collaboration.

The essays in this volume show how narratives of illness and disability—told

in biographical essays, fictional texts, cartoons, wordless comics, graphic novels, and serial comics—reflect on and negotiate the fact that these existential experiences are socially embedded and culturally shaped. They focus on the specific media qualities of verbal, visual, or (in the case of most comics) hybrid works of art to convey the experience of living, for instance, with autism, cancer, congenital disease, depression, Parkinson’s, prosthetic limbs, schizophrenia, or traumatic memories, and of working in ethics consultation, the clinic, or pharmacological research. They also push the limits of the individual medical experience, connecting parasitological research to epidemiology, medical history to contemporary knowledge of the microbiome, and the manifold impacts of climate change to geopolitical medical responsibilities. The aesthetic power of the selected artworks helps to testify and bring into public lived realities that often tend to be stigmatized, excluded, or disavowed by societies like our own that cherish efficiency, health, and success.

Introduction

3



While these essays allude to, and build on, the field of narrative medicine, with

its focus on the individual patient or the doctor-patient encounter, the essays are arranged so that the volume’s focus broadens gradually to incorporate the 4

social, political, and cultural context of illness, disability, and caregiving now characteristic of work in the health humanities. Common to all of the essays is attention to the historical context that shapes an illness or medical condition, whether as a brief, intensely private, and interpersonal encounter (as in the case of the essays by Avrahami and Jordan) or as a long-standing and widely shared set of experiences (as in the essays by Burdock and Oksman). Collaboration is an essential strategy these essays explore, whether as part of the production of the scholarly or artistic work (as in the essays by Donaldson, Freedman, and Spandler), or as a feature of the work being analyzed (as in the case of Krüger-Fürhoff, Misemer, Schmidt, and Squier).

Despite their different fields, these essays demonstrate a common purpose:

to examine the ways comics and literary texts build an audience and galvanize not just empathy (the traditional goal of narrative medicine) but also action. Particularly important are three signal concerns that appear in many of these essays: the refusal of stigmatized identity, whether through first-person storytelling, narrative strategies of displacement, the aesthetics of repudiation, or visual remediation of problematic images (Avrahami, Schmidt, Spandler, Donaldson); the insistence on community as a crucial component of health care and a critical (because so often underexamined) aspect of the medical experience (Freedman, Krüger-Fürhoff, Misemer, Squier); and the presence of disability gain, the process by which illness and disability come together to provide a range of narrative, epistemic, ethical, and political resources for artistic innovation motivated by a drive for social justice (Jordan, Burdock, lenk).8

The drawn and/or written narratives of illness and disability that these essays

analyze—works that, according to the term we coined in the introduction, belong to a shared universe of PathoGraphics—do not offer an ultimate meaning to the experiences they convey. On the contrary, most of them resist cultural attempts to hedge and tame the disturbing confrontation with our own finiteness by offering narratives of triumph and redemption, just as they refuse the supercrip story. Instead, the narratives present more limited but also more performative scopes: meaning- and decision-making, community building, and sharing and caring in day-to-day contexts and on a global scale with the help of stories that not only tell us what happened but help us to see it. At the same time, they acknowledge the fact that (visual or verbal) storytelling relies on collaboration in many ways: on experiences of health, illness, and disability lived through communally; on stories based on dialogue, dispute, or coauthorship; on comics drawn and told by several artists, developed by multidisciplinary teams, and addressed to specific communities with distinct geopolitical and cultural expectations and agendas. As readers and viewers, we are invited to envision ourselves less as competing

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for scarce resources—individual attention, health provision, encouragement, financial support—and more as belonging to a frail but resourceful, compassionate, and creative humanity that, while speaking in different voices, seeks to make sense of its shared vulnerability. These essays share their appreciation of the diverse geographic and social spaces in which human illness, pain, and suffering emerge and the challenge of accommodation and/or treatment transpires. Taken together they provoke a reconceptualization of the pathography, or illness narrative, gradually scaling it up to expand our understanding of the site and nature of illness and disability, the scope of treatment, and the necessary, and possible, spaces of care.

Notes 1. Colleen Becker, “Aby Warburg’s Pathosformel as Methodological Paradigm,” Journal of Art Historiography 9 (2013): 1–25; Will Eisner, Comics and Sequential Art (Tamarack, Fla.: Poorhouse Press, 1985); Sander Gilman, “AIDS and Syphilis: The Iconography of Disease,” in “AIDS: Cultural Analysis / Cultural Activism,” ed. Douglas Crimp, special issue, October 43 (2012): 87–107. 2. Lisa Diedrich, Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism (Minneapolis: University of Minnesota Press, 2016). 3. Anne Hunsaker Hawkins, “Pathography: Patient Narratives of Illness,” Western Journal of Medicine 171 (1999): 127–29, and Hawkins, Reconstructing Illness: Studies in Pathography, 2nd ed. (Purdue: Purdue University Press, 1998). 4. Rosemarie Garland-Thomson, Staring: How We Look (Oxford: Oxford University Press, 2009); Lennard J. Davis, The Disability Studies Reader, 4th ed. (London: Routledge, 2013);

Sayantani Dasgupta, “Listening as Freedom: Narrative, Health, and Social Justice,” in Health Humanities Reader, ed. Therese Jones, Delese Wear, and Lester D. Friedman, 251–60 (New Brunswick: Rutgers University Press, 2014); and Jasbir K. Puar, The Right to Maim: Debility, Capacity, Disability (Durham: Duke University Press, 2017). 5. W. J. T. Mitchell, Picture Theory (Chicago: University of Chicago Press, 1994), 89n9. 6. MK Czerwiec et al., Graphic Medicine Manifesto (University Park: Pennsylvania State University Press, 2015). 7. See http://‌www‌.fsgs‌.fu‌‑berlin‌.de‌/patho graphics. 8. Our thanks to Ann Fox for this crucial formulation. See Rosemarie Garland-Thomson, “The Case for Conserving Disability,” Bioethical Inquiry 9 (2012): 339–55, and https://‌serendip studio‌.org‌/oneworld‌/identity‌‑matters‌‑being‌ ‑belonging‌‑becoming‌/“what‌‑will‌‑you‌‑gain‌ ‑when‌‑you‌‑lose”‌‑disability‌‑gain.

References Becker, Colleen. “Aby Warburg’s Pathosformel as Methodological Paradigm.” Journal of Art Historiography 9 (2013): 1–25. Czerwiec, MK, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith. Graphic Medicine Manifesto. University Park: Pennsylvania State University Press, 2015. Dasgupta, Sayantani. “Listening as Freedom: Narrative, Health, and Social Justice.” In Health Humanities Reader, edited by Therese Jones, Delese Wear, and Lester D. Friedman, 251–60. New Brunswick: Rutgers University Press, 2014.

Davis, Lennard J. The Disability Studies Reader. 4th ed. London: Routledge, 2013. Diedrich, Lisa. Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism. Minneapolis: University of Minnesota Press, 2016. Eisner, Will. Comics and Sequential Art. Tamarack, Fla.: Poorhouse Press, 1985. Garland-Thomson, Rosemarie. “The Case for Conserving Disability.” Bioethical Inquiry 9 (2012): 339–55. ———. Staring: How We Look. Oxford: Oxford University Press, 2009. Gilman, Sander. “AIDS and Syphilis: The Iconography of Disease.” In “AIDS: Cultural Analysis / Cultural Activism,”

Introduction

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6

edited by Douglas Crimp. Special issue, October 43 (2012): 87–107. Hawkins, Anne Hunsaker. “Pathography: Patient Narratives of Illness.” Western Journal of Medicine 171 (1999): 127–29. ———. Reconstructing Illness: Studies in Pathography. 2nd ed. Purdue: Purdue University Press, 1998.

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Mitchell, W. J. T. Picture Theory. Chicago: University of Chicago Press, 1994. Puar, Jasbir K. The Right to Maim: Debility, Capacity, Disability. Durham: Duke University Press, 2017.

1

The Reflecting Physician Einat Avrahami

This chapter offers a narrative approach to the question of selective abortion, or, as it has been called by disability activists, eugenic abortion.1 This refers to the widespread practice of aborting a fetus if the prenatal diagnosis indicates that the child will almost certainly have a disability. The ethical problematic of genetic testing and prenatal diagnosis has attracted much scholarly attention in the past four decades, but it would be beyond the scope of this essay to summarize even a representative part of the debate. Rather, I wish to engage with Tom Shakespeare’s call for “an ethic of individual choice” when it comes to selective termination of pregnancies affected by impairment.2 I take Shakespeare’s position to mean that it is important to examine concrete, personal attitudes and responses to selective termination of “impaired pregnancies” and to treat these attitudes and responses as significant in themselves rather than as raw data that serves the higher end of philosophical appraisal or sociological research.

It is in this spirit that the following discussion attempts to conceptualize indi-

vidual moral choice in narrative terms—that is, as embedded in personal stories. Paying close attention to such narrative representations may complement and thicken the abstract and generalizing mode of thinking on the ethical significance of selective abortion that is prevalent in bioethics and disability studies. If, as Shakespeare has put it, philosophy addresses the “ought” and sociology describes the “is” of social behavior,3 then literary analysis is capable of negotiating the complex and contradictory voices in individual reflections about making hard moral choices. I have argued elsewhere that the narrative mode is better suited for addressing doctors’ moral dilemmas than the formal deliberation prevalent in bioethics.4 Here, my claim is that a narrative approach to the problematic of prenatal diagnosis can significantly contribute to the fierce debate (which some have called “a civil war”5) between bioethicists and disability activists. I wish to

shift the discussion from the detection of power struggles in ableist society to the specifics of personal choices. My assumption is that interacting with individual characters and the particular circumstances that lead them to act in certain 8

ways resembles our engagement in “real-life” situations much more than the deliberation of moral principles in bioethics or the quantitative and even qualitative categorization of data in sociology.

All stories, of course, are framed by social contexts. From a narrative perspec-

tive, they are enmeshed in communal metastories in which, for example, living with a disability may impose a social burden, or launch a personal and familial tragedy, or, less frequently, manifest heroic triumphs over physical and mental odds. Both personal and communal stories can be backed up with numbers and statistics,6 and often they use visual tropes and metaphorical prostheses to mobilize social fantasies and fears.7 Clearly, too, what readers and writers consider to be a disability is affected by social conditions and cultural stigmas. This is the underlying tenet of the disability movement’s political activism as well as “the social model of disability” developed in academia. My reading of personal stories takes into account the social critique of the medicalization of disability. Indeed, the collusion between the medical establishment and society in perceiving human diversity as a pathological condition that should be either rectified or destroyed is the very stage on which the characters in these stories unwittingly perform.8

My case study is a remarkable reflective narrative about a genetic consulta-

tion, written by Ruth Kannai, an Israeli family physician and teacher of medical ethics at the Hebrew University of Jerusalem, who has Gaucher’s disease. Tellingly titled “‘Maybe It Would Be Better If You Spoke to My Mother?’ Genetic Counseling and Personal Experience,”9 her story presents a unique encounter between a couple with “an impaired pregnancy” and a counseling doctor who lives with the same syndrome with which the couple’s fetus has been diagnosed. As a teacher of medical ethics, Dr. Kannai is well aware of the bioethical approach to genetic consultations, which is regulated by institutionally conceived “neutrality.” Thus her story focuses on the predicament of the physician-writer, who struggles to balance the “objective,” “factual” description of the problems of living with Gaucher’s with the personal recollections of her own lived experience as a child.

Since the story is set in Israel, our understanding of its social context would

benefit from some extratextual information on the prevailing attitudes toward issues concerning genetic testing in Israel today. Significantly, the level of Israeli women’s participation in prenatal testing is extremely high compared to that in other developed countries.10 While the use of genetic testing is a standard part of medical care for high-risk pregnancies in many Western countries, in Israel a combination of cultural, economic, and regulatory social forces also target and encourage non-high-risk women to undergo an ever-growing battery of prenatal tests.11 Thus, for example, amniocentesis for low-risk pregnant women over thirty-five years of age is financed by the state, in addition to a basic kit of prenatal genetic screening.12 Other procedures such as chorionic villus sampling or

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complex fetal ultrasounds have become part of the standard prenatal follow-up expected of pregnant women, to the extent that low-risk women who choose to forego them may be viewed as “irresponsible mothers.”13 Notably, even late abortions (after viability) due to any risk to fetal pathology are legal and socially acceptable,14 and they are far more common in Israel than in countries such as Germany, the United States, the United Kingdom, Denmark, and Canada.15 This is the case even though the rate of congenital malformations in Israel is close to that of other developed countries.16

Arguably, the clinical conception of genetic screening as the solution to the

problem of impairment is not restricted to Israel. According to Anita Ho, the mainstream medical and bioethical literature views prospective parents and the individual embryo or fetus as “genetically responsible” for the impairment, and as “the potential barrier” to the opportunity to change or remedy it.17 Yet in Israel, the medical paradigm that assumes biophysical impairments inevitably reduce the individual’s quality of life and opportunities is aligned not only with a sweeping “quest for the perfect baby” but also with the celebration of motherhood as “the chief ideological icon and primary identity for most Israeli women regardless of their education, employment and career aspirations.”18 In a society described as historically rooted in the ideology of “the chosen body,” 19 in which, furthermore, there are no explicit ethical guidelines for distinguishing among various embryonic and fetal impairments, 20 it is no wonder that parents and doctors alike tend to select abortions in cases that would generate hesitation in many Western countries. The tacit message of this state of affairs is that if prospective parents fail to produce a healthy child, they will have to face the consequences of bringing it up alone, with minimal social services and support.21

This is the stage on which Ruth Kannai’s story is enacted. The physician-writer

was asked by a colleague to share her knowledge with a couple who had to decide whether to terminate a pregnancy of a fetus “like her.” Used to giving genetic consultations as part of her work, she “had agreed to a telephone consult for this couple, without giving it any serious thought.”22 Yet as she picks up the receiver, she quickly realizes that this conversation is going to be unusual. The couple was referred to her “not due to [her] training in medical ethics and trans-cultural medicine, and not because [she is] an experienced family doctor,” but rather because their fetus “had exactly the same mutation, which I also carry: He and I both have Gaucher’s disease, with a mutation known to cause a moderate to severe symptoms, which mostly does not influence longevity and never affects the brain or the nervous system. It almost always causes hepatosplenomegaly [enlargement of the liver and the spleen], as well as skeletal disorders to a greater or lesser extent.”23 Unlike the thorough, biopsychosocial, and moral deliberations she was used to conducting with her own patients, which she describes in the narrative at length, this time she finds herself implicated in ways she had not foreseen. As she admits, “The truth is, I was surprised they called. When I agreed to speak with them I was sure they would not call: who would dare speak to the genetic The Reflecting Physician

9

counterpart of the fetus they were considering aborting?”24 Her insistence on the biological cause of Gaucher’s is validated by the father’s opening, apologetic comment: “If we were younger, and if it was easier to get pregnant,” he tells her, 10

“I wouldn’t hesitate [to abort], but since this is perhaps our last pregnancy. . . .”25

The medical model of disability that governs the conversation is obvious

from the start. The couple was referred to the consultation following a diagnostic amniocentesis, with “a question” phrased in clinical rather than ethical terms: “the question being whether it is recommended to terminate their pregnancy.”26 The information the narrator obtained about them is as scant as the patient details on a medical chart. She was told that they were both forty years old, married with two healthy children, that this was their third pregnancy, and that it had taken them three and a half years to conceive. The description conforms to the SOAP (subjective, objective, assessment, plan) method of clinical documentation, with the exception of the narrator’s flitting thought that substitutes for the patient’s subjective component: “So this is their last chance to have another child, I assumed.”27 Not only is the ethical dilemma and the patient’s subjective complaint presented as interchangeable, but the case description exhibits the major characteristics identified by Renee R. Anspach as the linguistic markers of the medical case presentation. According to Anspach, the language of case presentations is characterized by the following four markers: (1) the separation of biological processes from the person, (2) the omission of the linguistic agent (e.g., in the use of the passive voice), (3) treating medical technology and not the person applying it as the agent in the speech event, and (4) putting emphasis on the subjectivity of the patient’s accounts by speech markers such as [the patient] “states,” “reports,” “denies,” and so on.28

Anspach’s first marker is evident in the definition of Gaucher’s disease in

the story as a genetic mutation that affects biological functions. The second and third markers are condensed and succinctly embedded in the solution to the clinical problem. Blatantly passive, the phrase “the question being whether it is recommended to terminate the pregnancy” altogether omits the linguistic agent. We do not know who is going to recommend the termination of pregnancy, nor do we know the identity of the person who is asking for the recommendation. While the question is “out there,” no one is linguistically or, indeed, ethically responsible for putting it there. The passive voice grants additional weight to the recommendation itself: “whether it is recommended to terminate the pregnancy” is, notably, very different from saying “whether it is recommended to carry on with the pregnancy.” Thus the very phrasing of the question that motivates the consultation is not neutral but tends toward a medical paradigm that highlights one concrete outcome: the medical intervention of abortion. Notwithstanding the narrator’s comment about “their last chance to have another child,” the medical language that she uses presents the termination of pregnancy as a solution proportionate to the problem of impairment: the treatment plan fits the severity of the diagnosis.

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And yet the unfolding story shows that the doctor cannot remain commit-

ted to the medical paradigm while intimately assuming the perspective of the fetus who has the same mutation that she also carries. In order to resolve the conflicting demands of either withholding or disclosing her identity as “a disabled physician,” she splits herself emotionally and rhetorically, and addresses two different audiences. On the one hand, she talks to the couple directly, in a tone that underplays the disadvantages of living with Gaucher’s, while, on the other hand, she addresses her “interior audience”—her own family members, their relationships with her, and her painful childhood memories. She thus jokingly suggests to the couple that they had better speak to her mother, for, “after all, I represent the fetus in this strange simulation, and you need to decide whether to have a child like this.” Then, she “trie[s] to charm them” by displaying her achievements as “the successful doctor, married and mother of four, lecturer at a medical school, youth movement counselor in the past, who never missed a single trip.” And, she concludes: “My mother definitely does not regret bringing me into the world.” Conversely, she writes, “I went dizzy for a moment, immediately noticing that in the first sentence I had taken on the role of the fetus advocate, not the consulting doctor.”29 This realization drives her to negotiate her sense of identity vis-à-vis her own family, a motion that complicates and even belies the image she has displayed to the couple. Accordingly, she tells her interior audience: I didn’t tell them about how difficult it was for my parents to work and support our small family when I lay in the hospital for weeks at age five for a splenectomy, and the long months of hospitalization when I was seven years old, due to avascular necrosis [death of bone tissue] and osteomyelitis [bone infection]. I did not mention my elder sister, who to this day recalls the weeks during which she was sent to Aunt Sarah “because of my little sick, weak, spoiled sister, who Mom and Dad loved more.” At my father’s Shiva, she recalled how my father used to cry during the Sabbath kiddush when I was hospitalized, during those dark days before there were sleeping arrangements for parents in the children’s ward.30

These moving recollections flesh out “the tragic imagination” of disability. But to her actual audience—the couple who is seeking her advice—she returns to speak of herself in terms of the discourse of abilities with which she started the conversation: “My childhood was happy, normal. I must honestly admit: there were some hospitalizations here and there, orthopedic operations, pneumonia, weeks of bone pain, fever of unknown origin but I underwent a splenectomy. Your child will get enzyme replacement therapy; young patients who are treated at a young age no longer need to have a splenectomy . . . and in between life was normal, with school, friends, activities.”31 Improved medical technology, in other words, should help to correct the impairment, thus ensuring a “happy, normal childhood,” just like anybody else’s. The Reflecting Physician

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The medicalization of disability goes hand in hand with the discourse of abil-

ities. The narrator is privileged in describing her experience as “happy, normal,” implicitly confirming the ideal of healthy living as the required standard. Both of 12

these discourses ignore the social foundation of disability. In both, the solution of the problem is clinical, and both assign to the individual the responsibility for overcoming the impairment; hence, “young patients who are treated at a young age no longer need to have a splenectomy.” Overlooking the social dimension of living with a disability may explain the narrator’s following self-qualification: “I could hear myself faking a bit. Perhaps because of the excitement, perhaps because of the role to which I assumed I had been appointed.”32 Authenticity aside, the balance she constructs between the personal and the professional voices in the story totally collapses the minute the prospective mother asks her about the physical pain caused by Gaucher’s. “What do you do when your child has pain in his bones for weeks on end?” questioned the mother, who until this point remained silent and brought me back in a flash to my other roles: the mother, the doctor, the caretaker. “‘You give him pain killers, rest, splints,’ I answered, as the bitter taste of someone caught in the act of failure rose in my mouth.”33

The question of pain trumps most other questions, thus urging the narrator

to address it through the medical imperative of “doing.” Her roles of “mother,” “doctor,” and “caretaker” are the same here: to give immediate help, to remedy the situation by taking action. Yet the prospective mother’s question can also be read differently: not “what do you do when your child has pain” but “what do you do when your child has pain in his bones for weeks on end?” This change of emphasis calls attention to the parent’s suffering rather than to the unborn child’s. It illuminates the mother’s helplessness while she is deprived of her maternal ability to comfort and relieve pain—much like the image of the narrator’s father, crying, in her sister’s story. Both stories frame disability as a lived interaction that overcharges pain with meaning: they highlight the ability to alleviate pain as the ultimate criterion of good parenting.

But it is precisely the meaning of pain, which is socially constructed, that is

excluded from the problem-solving medical model. Not surprisingly, the narrator connects her “bitter taste of someone caught in the act of failure” to her own moral failure to bridge the gap between the personal and professional stories. Turning again to her interior audience in the following sentence, she berates herself: “How could I—who took narcotic painkillers for months, who underwent orthopedic operations and horrendous bone crises that made me want to die—how could I so casually hide these facts from parents whose fetus is a child ‘like me.’ The doctor and ethicist within me returned to life. I was embarrassed at having presented such a unilateral and biased position in favor of the child, in favor of life . . . in favor of myself.”34

Reclaiming her identity as a “doctor and ethicist” comes at the expense of

acting as the fetus advocate, or as a role model for people with disabilities who seek an identity beyond that of a medical subject, a patient. While the narrator

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is a person with a disability, she is entirely unaware of the social dynamics that produce disabilities. Hence her rhetorical use of the double audience can mitigate the intensity of her conflicts only superficially and temporarily. Once again, she must split herself into the capable, “normal” consultant and the disabled “other.” At the same time, she senses that this split also carries a moral significance and cannot resolve the dilemma at the heart of the consultation: I resumed the role of the neutral doctor: I presented numbers and statistics about the current treatment options, about the treatments that are in advanced stages of clinical trials and will soon be on the market. I clarified a bit of the uncertainties, and described how even within the same genetic diagnosis there is a wide range of possible clinical characteristics. Once again I emphasized: the life span is usually ordinary and there is no mental damage. There is often some form of handicap that usually does not hinder one’s independence. Once again I felt as if my words were empty, hollow. After all, they already heard all of this from the genetic consultant.35

Resuming “the role of the neutral doctor” entails her dissociation from lived experience that in turn reinforces the self-excluding effect of her double-edged identity. Moreover, as she reiterates the “empty, hollow” words of medical speech, she not only drains her own experience of meaning but also actively conveys the hurtful message that children “like her,” defined only by their impairments, are inevitably burdensome and inferior.

As a narrator and character in the story, then, Kannai’s disabled physician

embodies the “expressionist” objection to selective abortion of “genetically impaired” fetuses because of its discriminatory implications for people who live with similar impairments. Yet to me, the critical aspect of this point in the story is the way it represents the great risk of talking—and of not talking—about the pains of disability, a risk that the disability movement has only recently started to acknowledge.36 I want to suggest that the mother’s question about pain and the writer’s argument, “in favor of the child, in favor of life . . . in favor of myself,” dramatize a distinct ethical dilemma. This dilemma is grounded in the lived experience of physical and mental pain from which the narrator tries in vain to extricate herself through the use of medical speech. Terrifying in its narrowness, to paraphrase Elaine Scarry,37 the mother’s question about pain raises the simple question: how can you expect me to bring a child into a world of pain and take responsibility for this tortured innocence? From a disability perspective, the fallacy here lies in confusing the disabling trait with the whole person. It is “the sin of synecdoche,” the empirical and logical errors of which have been exposed by the disability social critique.38 However, from the point of view of “the tragic imagination”—the grand narrative that can give human suffering coherence and meaning—this is a legitimate question, especially so since the reflecting doctor herself hovers between expressing her own right to live and acknowledging the torments of her physical and emotional pain. From the perspective of The Reflecting Physician

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narrative ethics, the fallacy in this consultation lies in disregarding the prospective parents’ need for a richer future story about good parenting, whose meaning they can envision and appropriate.39 14



It is important to emphasize, however, that this story focuses on the physi-

cian-narrator’s moral work rather than on the prospective parents. Her growing understanding of the moral inadequacy of the medical paradigm is part of this work, as is her readiness to reevaluate her identity in light of the stories of past relationships. While the couple “warmly thanked” her and ended the conversation, she was left to struggle with her own dilemma. On putting down the receiver, she feels “exhausted” and bitterly regrets agreeing to undertake the consultation. “Luckily,” she admits, “they did not ask me what my opinion was or what I would do, as other patients often ask.” She tries to imagine herself on the receiving end of the clinical explanations and assurances she has just given and cannot stop wondering, “What would I do in their place?”40

In our correspondence, Dr. Kannai told me that she had written the story in

a state of deep agitation right after the consultation. A few days later, she found out that the couple had decided to have an abortion. It is therefore significant that the narrative she eventually published does not end with the decision to end the pregnancy but with the following dialogue with her “twelve-year-old son who silently followed [her] side of the phone conversation.”41 Standing at her kitchen counter, she turns to him and asks: “Well, what would you do?” hoping for a simple explanation and a clear decision from this young teenager who has lived his entire life with this limping mother of his. “What would I do with what?” he asked. “If you and your wife were told you had a fetus with Gaucher’s disease?” I did not relent. (This was a legitimate question, considering the fact that my son is an obligatory carrier of the disease). “What nonsense,” he said. “What a silly question!”

Thanks for the vote of confidence. I smiled.42

Short as it is, the quoted dialogue achieves a resolution of the narrator’s dilemma: a moral “vote” has been cast and the question dismissed as “silly” in its new light. Obviously, the dialogue rests on much undisclosed narrative information that is shared only by the participants. As readers we are excluded from the history of their relationship and from the particular family life in which it is embedded. And yet, although the content of the relationship is mostly implied, the son’s “vote of confidence” is felt to be trustworthy and reliable. It enables the narrator to reclaim her sense of identity and self-value. Her smile in the story’s final sentence carries the promise of a better and more coherent story that awaits her son and his “future wife.”

Ironically, perhaps, the story as a whole represents Shakespeare’s sought-

after “ethics of individual choice” as interpersonal and collaborative.43 In Margaret Urban Walker’s words, the story shows moral choice to be “a continuing

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negotiation among people.”44 I have discussed elsewhere Walker’s view of morality as “a socially embodied medium of mutual understanding and negotiation between people over their responsibility for things open to human care and response.”45 In a nutshell, this means that moral knowledge is “thoroughly situated” in diverse social and psychological contexts, and, furthermore, that it accommodates people’s sense of time. Accordingly, moral reasoning takes the form of narratives, specifically by inviting close descriptions and analogies among narratives of relationship, identity, and value.46 Such a rigorous yet flexible method of reasoning that is capable of discerning how people arrive at a moral choice would come as no surprise to students of literature who are skilled in close reading and comparative analysis of complex representations of how people live, act, and think. By way of summary, I would like to take a quick look at another personal narrative by Ruth Kannai, for the interesting analogies that can be gleaned from its embedded, storied morality.

The story “‘Jum’ah’ Syndrome,” published in 2012 (two years after “Genetic

Counseling”), revolves around the narrator’s memories of hospitalization as a six-year-old child and her discovery of resilience, friendship, and empathetic inner resources during the long months of postoperational treatments and partial recovery.47 Unlike her “Genetic Counseling” narrative, this story is prefaced by a personal statement of authenticity in lieu of the usual academic abstract: This is my memoir as a sick child, hospitalized in the Pediatric ward of a large hospital, many years ago. The story tells about my friendship with another young patient, Jum’ah, a Bedouin child who suffered from Congenital Cyanotic Heart Disease, to whom the pediatric ward was Home.

My childish understanding of Jum’ah’s loneliness, anxiety and struggle to be

loved and belong are described in this narrative. I describe how this experience still has an influence on my adult professional and personal concepts.48

Like a concise bildungsroman, the “memoir” part of the narrative is a lesson in identity formation that is effected by and through the power of stories. It opens with an interior monologue that conveys the little girl’s experience of waking up from anesthesia to a barren white landscape, where she is poked and prodded by a procession of medical staff. Soon, however, the adult narrator takes over the telling to communicate how her young and “quite angry” self learned to cope with external and internal obstacles in the alien, hostile environment, in “those horrible years” (mentioned also in “Genetic Counseling”) when “the walls of the children’s ward . . . were not yet decorated with drawings of animals and clouds,” parents “were not offered sofas beside their children’s beds, and friends were not allowed to visit.”49 Significantly, the two strategies that helped the young Ruth to discover her inner resources were reading children’s books and, later, creatively transferring their plots to her developing relationship with Jum’ah. Together, the children set up their imaginative resistance to the dreary routine of the hospital, The Reflecting Physician

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creating “a whole world of imagination into which [they] escaped from the illness and pain of the children’s ward.”50 At long last, the precocious Ruth is released from the hospital and returns home stronger and wiser, gaining a new status 16

among her friends as an expert reader and storyteller.

In contrast to “Genetic Counseling,” in this story Kannai seems to be aware of

the extent to which the pains of disability depend on social and even geopolitical circumstances rather than on bodily impairments. In fact, after the opening sentences the narrator mentions “the illness and pain of the children’s ward” only in terms of the ability to escape them, while at no point in the story does disease or bodily impairment dictate their friendship and daily life in the ward. Whereas much is said about their emotional pain—quite explicitly in the second part of the story that dwells on Jum’ah’s loneliness and forced estrangement from his parents, culture, and native language—these painful feelings are shown to be the direct product of the hospital’s strict regime and the different social contexts of their families. Thus the narrator poignantly compares the hospital of her childhood with today’s much more child- and family-friendly units, but, on turning to Jum’ah’s story, she clarifies that his suffering stems from his family’s poverty, implicitly linking his parents’ inability to relieve his pain with their lower-class geographic and social status as members of an ethnic and religious minority: “Jum’ah would not stop crying until his sad and embarrassed parents turned to leave, apologizing effusively for having to rush to catch the three buses they needed to take back to the tent somewhere in the desert. They could come again only in a month’s time. Inshallah.”51

Illness and impairment, by contrast, are mentioned only casually, as a given

condition or a passing phase. Even the physiologic breakthrough that enabled Ruth to read occupies no more than a sentence: “The moment the physiotherapist taught me to turn from my back to my side, I turned my back to the chaotic ward and immersed myself in other worlds.”52 Likewise, the pivotal moment of relearning to sit and, consequently, to start using a wheelchair is nested as a sentence-clause in the cheerful paragraph on her and Jum’ah’s childish adventures: Jum’ah showed me where to find dairy delicacies when all the other kids got only regular milk, cheese, jam and a cucumber (it was in the nurses’ refrigerator in a special box marked “jum’ah’s food”). When I could finally sit in a wheelchair, Jum’ah took me to explore the fascinating world of the hospital basement. It was quite simple: all we had to do was press the button on the glass door of our ward, roll out to the elevators, press one of the buttons in the elevator (ignoring the threatening warning: “Use of the elevator is strictly forbidden by children under age 12 without an accompanying adult!”) and a whole world opened up before us. We were safe as long as we returned by the time they distributed our medication.53

In much the same way, Jum’ah’s heart disease is bracketed off as a short break in their engrossing games. Far from being perceived as a disability, his condition

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is embedded in the larger story of Ruth’s emergent coping strategies, as she learns to shift her attention from the isolated world of books to the possibility of a shared imaginative world with another child.

Thus when the “energetic, talkative and enthusiastic” boy disrupts Ruth’s

quiet reading by “chattering and laughing,” she relies on her mother’s orientalist narrative to account for the moments Jum’ah’s “red lips turned blue” and he “would squat for a short while and take a few deep breaths before leaping back into action”: “My mother explained to me that this is how Bedouins sit around the fire, recounting folk stories and warming their bodies on cold desert nights.”54 Almost as an afterthought, the narrator adds: “Only much later on, with my medical knowledge, did I recall that image of Jum’ah squatting and realize he suffered from Cyanotic heart disease.”55 The medical conception of suffering ironically contrasts with the young girl’s experience and the adult storyteller’s perception of Jum’ah’s emotional suffering and its social origin. At one point in their “short childlike conversations,” Jum’ah tells Ruth that “his name means ‘Friday’ in Arabic.” Now in the absence of her mother’s mediation, she turns to her own collection of stories to help her construct their relationship: “in my imagination I already sailed off to a deserted island, casting myself as Robinson Crusoe and Jum’ah as my ever-faithful servant Friday.”56 Casting herself as the heroine in an adventure story allows their relationship to evolve and even thrive in the real world of the hospital. Jum’ah, who has practically been raised by the nurses in the ward, takes the lead in their joint explorations of the hospital’s hidden corners during the day, whereas Ruth takes the lead in their shared bedtime stories at night.

There, with Jum’ah curled on her bed at night, she gradually becomes aware

of their differences: “how fragile he was, how fast his little heart beat,”57 and with that awareness came a new recognition of his life story as separate from hers and deserving of her compassion. Her moral growth is implied in the second half of the narrative, which foregrounds her experience of Jum’ah’s breakdown on every one of his parents’ rare visits. An observant child, Ruth overhears the nurses discuss her friend’s harrowing crisis as he cries and yells at his parents to go away. The adult narrator quotes the head nurse’s explanation that this was Jum’ah’s way of expressing his great need for his parents’ love and his fear of abandonment. Years later, the narrator would label Jum’ah’s behavior as “a syndrome” that can be applied to diverse everyday situations. In the closing passages of the story, Kannai presents episodes from her patients’ lives and her own that reflect “Jum’ah’s” syndrome, the all-too-human predilection to allow one’s fear of an anticipated end to overshadow the simple joys of the flitting moment.

Read individually, neither one of Kannai’s personal stories signals a differ-

ence between the narrator-character and the implied author; that is, neither of them suggests that the narrator is unreliable. Yet the juxtaposition between them presents a very different picture of the experience of growing up with Gaucher’s. A counternarrative in more ways than one, Kannai’s “memoir as a sick child” The Reflecting Physician

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highlights the pains of disability as a product of social regulations and control rather than of bodily impairment. The vision of disability as a private individual tragedy that dominates “Genetic Counseling” is altogether absent from this 18

story that, on the contrary, actively works to normalize the children’s lives in the ward. Even similar personal recollections, such as the nightly separation from her parents, clash in terms of tone, narrative emplotment, and thematic focus. It is enough to compare the familial agony caused by separation in “Genetic Counseling” with the matter-of-fact report of the same circumstances in “‘Jum’ah’ Syndrome” in order to realize that the stories are not simply differently inflected. In contrast to the deep feelings of guilt and shame the narrator invokes in the first story, in the second parental separation functions as a prelude to the story’s focus on the friendship that would lead to young Ruth’s moral growth: “In the evenings, after my parents returned home, and Jum’ah’s parents never arrived, Jum’ah would curl up in my bed. Only then, with my already developed motherly senses, I felt how fragile he was, how fast his little heart beat. ‘Tell me a story’ he would invariably ask.”58 Moreover, unlike the failure to integrate the different parts of herself, so keenly felt by the narrator in “Genetic Counseling,” in “‘Jum’ah’ Syndrome” the young girl manifests the very qualities and values that the adult narrator also cherishes: caregiving, empathy, imaginative creativity, and self-reflection; indeed, young Ruth’s already developed maternal senses have been seamlessly integrated into the adult narrator’s self-reflection.

“‘Jum’ah’ Syndrome” is a storied response to the medical model of disability

as pathology represented in “Genetic Counseling.” It is an attempt to revisit—and revise—the physician-narrator’s failure to respond to the prospecting parents’ need for a future story other than the medical story “they [had] already heard.” Retelling her own story as a child with Gaucher’s has enabled her to engage in a moral inquiry into the relationships and values that informed her identity. Rereading “Genetic Counseling” in light of the later published “‘Jum’ah’ Syndrome” is an exercise in thinking with stories,59 the professed medium of narrative ethics. Storied identities, in Adam Zachary Newton’s apt words, take up “narrative as relation and human connectivity, as Saying over and above Said or as Said called to account in Saying; narrative as claim, as risk, as responsibility, as gift, as price. Above all, as an ethics, narrative is performance or act.”60 Kannai’s narrative process of unlearning to view disability as pathology is not merely a personal achievement. It affirms the ethical viability of stories told by people with disability—stories that have been rejected by the medical system and bioethics as a form of knowledge.61

Granted that it is high time doctors and genetic consultants become better

acquainted with the social critique of genetic testing, what prospective parents need when they have to decide whether to bear a child who would have, say, Gaucher’s, is not an explanation of how to reduce social suffering. It is futile to answer narrative questions with politically correct abstraction. Whatever they choose to do, they require the consultant’s collaboration in creating a future story

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that they can accept. Especially in Israel, where the ethical debate on genetics has evolved wholly within the medical paradigm, there is an urgent need for developing a new and deeper understanding of what counts as nondirective information in genetic counseling. Genetic consultants cannot remain ethically neutral, for a great part of their job consists in helping prospective parents understand that people with a disability lead lives as rich and complex as their own. Understanding this is extremely hard. Indeed, without the skills of a good reader it is doubtful that doctors and consultants would be able to see through the biases of the medical paradigm in whose terms they already think and communicate with parents. In order to shake off the notion of medical neutrality, we cannot simply resort to general propositions and arguments. We need a particular story or, rather, many particular stories to help clarify where individuals stand, and the best way for health professionals to begin this education is by and through the narrative testimonies of people with disabilities.

Notes 1. The wide range of the debate can be seen in Tom Shakespeare, “Choices and Rights: Eugenics, Genetics and Disability Equality,” Disability and Society 13, no. 5 (1998): 665–69; Simon Jonathan Hampton, “Family Eugenics,” Disability and Society 20, no. 5 (2005): 551–53; David Turnbull, “Genetic Counselling: Ethical Mediation of Eugenic Future,” Futures 32 (2000): 853–65; Ruth Hubbard, “Abortion and Disability: Who Should and Should Not Inhabit the World?” in Disability Studies Reader, ed. Lennard J. Davis, 3rd ed., 107–19 (New York: Routledge, 2010); and Marsha Saxton, “Disability Rights and Selective Abortion,” in Davis, Disability Studies Reader. In “Disability, Bioethics, and Rejected Knowledge” (Journal of Medicine and Philosophy 31, no. 3 [2006]: 269–83), Christopher Newell quotes an Australian government authority rule from 2002 that weeding out embryonic “defects” such as deafness or dwarfism is reasonable and permissible, whereas doctors cannot simply accept the wish of parents to select embryos that have deafness or dwarfism (273). 2. Shakespeare, “Choices and Rights,” 219. 3. Ibid. 4. Einat Avrahami, “Positive Wrongdoings: Reading Doctors’ Narratives on Ordinary Ethics,” Literature and Medicine 29, no. 2 (2012): 325–54. 5. Mark Kuczewski and Kristi Kirschner, “Bioethics and Disability: A Civil War?” Theoretical Medicine and Bioethics 24, no. 6 (2003): 42. 6. Kathryn Montgomery, Doctors’ Stories: The Narrative Structure of Medical Knowledge (Princeton: Princeton University Press, 1991).

7. David T. Mitchell and Sharon L. Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (2000. Reprint, Ann Arbor: University of Michigan Press, 2011). 8. Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (London: Verso, 1995); Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998). 9. For the sake of brevity, I refer to Ruth Kannai’s “‘Maybe It Would Be Better If You Spoke to My Mother’” by its subtitle: “Genetic Counseling.” 10. Yael Hashiloni-Dolev, Life (Un)Worthy of Living: Reproductive Genetics in Israel and Germany (Dordrecht: Springer, 2007), 41. In “The Quest for the Perfect Baby: Why Do Israeli Women Seek Prenatal Genetic Testing?” (Sociology of Health 28, no. 1 [2006]: 21–53), Larissa Remenick writes that in Japan “only 4% of pregnant women over 35 years of age reported having amniocentesis; in Denmark and Holland, these figures range between 9% and 16%, while in Israeli Jewish women this rate was about 51% in general and reached 94.4 percent for secular women, in 2003” (24). 11. Hashiloni-Dolev, Life (Un)Worthy of Living; David Wasserman, Jerome Bickenback, and Robert Wachbroit, eds., “Introduction” to Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability (Cambridge: Cambridge University Press, 2005), 3–4. 12. In Life (Un)Worthy of Living, HashiloniDolev claims that in Israel cost-benefit analysis related to genetic abnormalities is common and ethically acceptable, and at the level

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of policy-making economic discourse has replaced moral reasoning (53–54). 13. Remenick, “Quest for the Perfect Baby,” 26. 14. Sagit Mor, “The Dialectics of Wrongful Life and Wrongful Birth Claims in Israel: A Disability Critique,” Studies in Law, Politics and Society 63 (2014): 113–46. 15. Remenick, “Quest for the Perfect Baby,” 45. 16. Hashiloni-Dolev, Life (Un)Worthy of Living, 35. 17. Anita Ho, “The Individualist Model of Autonomy and the Challenge of Disability,” Bioethical Inquiry 5 (2008): 199. 18. Remenick, “Quest for the Perfect Baby,” 25. 19. See Meira Weiss, The Chosen Body: The Politics of the Body in Israeli Society (Stanford: Stanford University Press, 2002). The two types of frequent mutation of Gaucher’s disease are N37OS, often associated with a mild type of the disease, and 84GG, associated with a more severe disease. In Life (Un)Worthy of Living, Hashiloni-Dolev notes that “the frequency of the mild form of the disease, the inability to predict the severity of the phenotype and the existence of an effective treatment for this phenotype are among the arguments against screening for carriers of Gaucher disease [in Israel]” (52). However, both Kannai and the fetus in her story carry the “N37OS/84GG mutation,” which is associated with the more severe symptoms of Gaucher’s. 20. Ibid., 52–53. Hashiloni-Dolev stresses the absence of written policy and active guidelines for genetic counseling, which results in different hospitals having separate units and different policies of prenatal genetic screening and counseling. Her study contrasts the Israeli lack of ethical guidelines with the explicit and detailed guidelines provided by the German Society of Human Genetics. 21. Remenick, “Quest for the Perfect Baby,” 26. 22. Kannai, “Genetic Counseling,” 260. 23. Ibid., 261. 24. Ibid., 260. 25. Ibid. 26. Ibid. 27. Ibid. 28. Renee R. Anspach, “The Language of Case Presentation,” in Sociology of Health and Illness: Critical Perspectives, ed. Peter Conrad and Rochell Kern, 3rd ed., 319–38 (New York: St. Martin’s Press, 1994). 29. Kannai, “Genetic Counseling,” 261. 30. Ibid. 31. Ibid. 32. Ibid. 33. Ibid. 34. Ibid. 35. Ibid.

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36. In a series of interviews with parents of children with Down syndrome and expecting parents, Alison Piepmeier showed the complexity and diversity of her interviewees’ personal stories. Their narratives challenged both the cultural stereotypes about disability and the conventional feminist reproductive rights discourse. “Ultimately, the interviews highlighted the inadequacy of the narratives of ‘choice’” (Alison Piepmeier, “The Inadequacy of ‘Choice’: Disability and What’s Wrong with Feminist Framings of Reproduction,” Feminist Studies 39, no. 1 [2013]: 169). 37. Elaine Scarry, The Body in Pain (1985. Reprint, New York: Oxford University Press, 1987), 51–56. 38. On the medical paradigm that evaluates the “quality of life” of a whole person only in terms of their disability, see Adrienne Asch, “Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy,” American Journal of Public Health 89, no. 11 (1999): 1651; Erik Parens and Adrienne Asch, Prenatal Testing and Disability Rights (Washington, D.C.: Georgetown University Press, 2000), 3–43; Erik Parens and Adrienne Asch, “The Disability Rights Critique of Prenatal Testing: Reflections and Recommendations,” Special Supplement, Hastings Center Report 29, no. 5 (1999): S1–S22; and Adrienne Asch and David Wasserman, “Where Is the Sin in Synecdoche? Prenatal Testing and the Parent-Child Relationship,” in Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability, ed. David Wasserman, Jerome Bickenbach, and Robert Wachbroit, 172–216 (Cambridge: Cambridge University Press, 2005). 39. A narrative approach should not be confused with a philosophical argument, such as Parens and Asch’s “parental attitude argument,” since the latter assumes the position of a moral agent who can scrutinize and judge propositions as universally adequate or inadequate. The parental attitude argument in Prenatal Testing, namely that “if we recognize what is really important about the experience of parenting, we would see that we should be concerned with certain attitudes toward parenting, not with ‘disabling’ traits in our children” (18; emphasis added), totally overlooks the particular, situated, and negotiated nature of arriving at an individual moral choice; therefore, while it may be useful as a guiding principle for counselors, it is too general to be useful for individual prospective parents. 40. Kannai, “Genetic Counseling,” 261. 41. Ibid. 42. Ibid. 43. In “Would It Be Better for Her Not to Be Born?,” Alison Piepmeier discusses the

decision-making processes of women following positive prenatal testing for Down syndrome. Her interviews with these women suggest that, regardless of their final decision about the pregnancy, they experienced the decision-making process as an emotionally agonizing and morally ambiguous struggle with contradictory social narratives. 44. Parens and Asch, Prenatal Testing, 67. 45. Ibid. 46. Margaret Urban Walker, Moral Understandings: A Feminist Study in Ethics, 2nd ed. (Oxford: Oxford University Press, 2007), 17, 116–19; Avrahami, “Positive Wrongdoings.” 47. Ruth Kannai, “‘Jum’ah’ Syndrome,” Patient Education and Counseling 87 (2012): 133–34. 48. Ibid., 133. 49. Ibid.

50. Ibid., 134. 51. Ibid. 52. Ibid., 133. 53. Ibid., 134; emphasis added. 54. Ibid., 133. 55. Ibid. 56. Ibid. 57. Ibid., 134. 58. Ibid. 59. Arthur Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago Press, 1995), 23–24. 60. Adam Zachary Newton, Narrative Ethics (Cambridge, Mass.: Harvard University Press, 1997), 7. 61. Newell, “Disability, Bioethics, and Rejected Knowledge,” 272.

References Anspach, Renee R. “The Language of Case Presentation.” In Sociology of Health and Illness: Critical Perspectives, edited by Peter Conrad and Rochell Kern, 319–38. 3rd ed. New York: St. Martin’s Press, 1994. Asch, Adrienne. “Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy.” American Journal of Public Health 89, no. 11 (1999): 1649–57. Asch, Adrienne, and David Wasserman. “Where Is the Sin in Synecdoche? Prenatal Testing and the Parent-Child Relationship.” In Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability, edited by David Wasserman, Jerome Bickenbach, and Robert Wachbroit, 172–216. Cambridge: Cambridge University Press, 2005. Avrahami, Einat. “Positive Wrongdoings: Reading Doctors’ Narratives on Ordinary Ethics.” Literature and Medicine 29, no. 2 (2012): 325–54. Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. London: Verso, 1995. Frank, Arthur. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1995. Hubbard. Ruth. “Abortion and Disability: Who Should and Should Not Inhabit the World?” In Disability Studies Reader, edited by Lennard J. Davis, 107–19. 3rd ed. New York: Routledge, 2010. Hampton, Simon Jonathan. “Family Eugenics.” Disability and Society 20, no. 5 (2005): 551–53.

Hashiloni-Dolev, Yael. A Life (Un)Worthy of Living: Reproductive Genetics in Israel and Germany. Dordrecht: Springer, 2007. Ho, Anita. “The Individualist Model of Autonomy and the Challenge of Disability.” Bioethical Inquiry 5 (2008): 193–307. Kannai, Ruth. “‘Jum’ah’ Syndrome.” Patient Education and Counseling 87 (2012): 133–34. ———. “‘Maybe It Would Be Better If You Spoke to My Mother?’ Genetic Counseling and Personal Experience.” Patient Education and Counseling 80 (2010): 260–61. Kuczewski, Mark, and Kristi Kirschner. “Bioethics and Disability: A Civil War?” Theoretical Medicine and Bioethics 24, no. 6 (2003): 455–58. Linton, Simi. Claiming Disability: Knowledge and Identity. New York: New York University Press, 1998. Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. 2000. Reprint, Michigan: University of Michigan Press, 2011. Montgomery, Kathryn. Doctors’ Stories: The Narrative Structure of Medical Knowledge. Princeton: Princeton University Press, 1991. Mor, Sagit. “The Dialectics of Wrongful Life and Wrongful Birth Claims in Israel: A Disability Critique.” Studies in Law, Politics and Society 63 (2014): 113–46. Newell, Christopher. “Disability, Bioethics, and Rejected Knowledge.” Journal of Medicine and Philosophy 31, no. 3 (2006): 269–83. Newton, Adam Zachary. Narrative Ethics. Cambridge, Mass.: Harvard University Press, 1997.

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Parens, Erik, and Adrienne Asch. “The Disability Rights Critique of Prenatal Testing: Reflections and Recommendations.” Special Supplement, Hastings Center Report 29, no. 5 (1999): S1–S22. ———. Prenatal Testing and Disability Rights. Washington, D.C.: Georgetown University Press, 2000. Piepmeier, Alison. “The Inadequacy of ‘Choice’: Disability and What’s Wrong with Feminist Framings of Reproduction.” Feminist Studies 39, no. 1 (2013): 159–86. ———. “Would It Be Better for Her Not to Be Born? Down Syndrome, Prenatal Testing, and Reproductive Decision-Making.” Feminist Formations 27, no. 1 (2015): 1–24. Remenick, Larissa. “The Quest for the Perfect Baby: Why Do Israeli Women Seek Prenatal Genetic Testing?” Sociology of Health 28, no. 1 (2006): 21–53. Saxton, Marsha. “Disability Rights and Selective Abortion.” In The Disability Studies Reader, edited by Lennard J. Davis,

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120–32. 3rd ed. New York: Routledge, 2010. Scarry, Elaine. The Body in Pain. 1985. Reprint, New York: Oxford University Press, 1987. Shakespeare, Tom. “Choices and Rights: Eugenics, Genetics and Disability Equality.” Disability and Society 13, no. 5 (1998): 665–69. Turnbull, David. “Genetic Counselling: Ethical Mediation of Eugenic Future.” Futures 32 (2000): 853–65. Walker, Margaret Urban. Moral Understandings: A Feminist Study in Ethics. 2nd ed. Oxford: Oxford University Press, 2007. Wasserman, David, Jerome Bickenback, and Robert Wachbroit, eds. Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability. Cambridge: Cambridge University Press, 2005. Weiss, Meira. The Chosen Body: The Politics of the Body in Israeli Society. Stanford: Stanford University Press, 2002.

2

Assembling a Shared Life in Anders Nilsen’s Don’t Go Where I Can’t Follow Tahneer Oksman

In a 2015 review article, “No Protocol for Grief,” Ann Jurecic observes that “literary grief memoirs are having a moment in publishing; they provide vivid evidence that mourning is more complicated than formulaic accounts of bereavement acknowledge.”1 Jurecic’s statement corroborates what Amy-Katerini Prodromou argues in her book published in the same year, Navigating Loss in Women’s Contemporary Memoir. As Prodromou explains in her introduction, her study makes the case for “a subgenre that emphasizes the complexity of recovery in line with new wave theories of grief that have been emerging in opposition to Freud and the standard model of grief since the early 1990s.”2 Both Prodromou and Jurecic use, as case studies, books of prose that “defy neat placement into genre categories.”3 For Prodromou, these include late twentieth- and early twenty-first-century works of grief and loss, including, as some examples, Lucy Grealy’s Autobiography of a Face (1994), Jenny Diski’s Skating to Antarctica (1997), and Judith Barrington’s Lifesaving (2000). Jurecic similarly reviews two genre-defying, hybrid prose texts, both works she describes as “essayistic”: Helen Macdonald’s H is for Hawk (2014) and Rebecca Solnit’s The Faraway Nearby (2013). As Jurecic says of the two books she reviews, in a statement that could apply to all of the texts mentioned here, these works of mourning “experiment with ideas.”4 More specifically, they could be said to “connect,” as Solnit does, “the faraway and the nearby, the invisible and the visible, the unknown and the known.”5

For Jurecic, “One need not be a writer . . . to think essayistically”—by which

she means experimentally—“about loss.”6 Indeed, if each experience of loss is unique, and if “there is no ‘right’ way to mourn,” then it stands to follow that

there are as many ways of turning one’s experience of loss into a representation as there are of experiencing loss itself.7 In this essay, using Anders Nilsen’s Don’t Go Where I Can’t Follow (2006; republished 2012), a multimodal hybrid text 24

in which the artist, a well-known North American cartoonist, mourns the death of his partner, incorporating representations of and mementos from their time together, including photographs, postcards, a letter, illustrations, comics, and diary entries, I explore what it means to grieve in and across a variety of modes, and how such an examination might shed light on the visual dimensions of loss and grief.8 Nilsen’s self-described “memorial” book testifies to his nearly six years of being with artist Cheryl Weaver, who died of cancer in 2005 at the age of thirty-seven.9 Arranged in a loose chronology of eight unnumbered sections, his book can best be understood as an assembly, a word that, according to the Oxford English Dictionary, includes as some of its definitions, a “gathering together,” a “meeting,” “the state of being collected or gathered,” “the action or method of assembling a . . . composite article,” “the coming together of two persons or things,” “a gathering of persons,” and “a collection of things.”10

With its unique structure, the text, which in some way or another corresponds

with each of these descriptions, highlights the assembly work that grieving calls for, a response to the fracturing that occurs in especially forceful ways following the loss of a person with whom one has been sharing a life. The assemblage that comes after such a loss might include, most importantly, a grieving person’s attempts to connect: (1) past memories and present outlook, (2) former and current senses of self, (3) the ineffable “presence” of the lost love with the enduring presence of the survivor, and (4) the bereaved self with a community of others. A close reading of Nilsen’s Don’t Go Where I Can’t Follow reveals a range of modes and modalities within which such connecting, gathering, and meeting can be propelled, even as, ultimately, these various mechanisms of assembly reinforce the insurmountable separations—between the living and the dead, the past and the present, the individual and his community—that this kind of work tries to repair.11 Additionally, reading Don’t Go Where I Can’t Follow as part of a growing body of contemporary grief memoirs—in the case of this essay, mainly works of prose but with a potential to apply these analyses to other formats and modes, such as poetry, more conventionally structured graphic narratives, photographic essays, and works of fiction—shows how the assemblage so visibly traceable in the book itself also presents a potential prototype for the kind of assembly work at the heart of the PathoGraphics project. As its web-page description makes plain, the mission of PathoGraphics, which is to put in conversation “literary studies, media studies, cultural studies, history of science, and medicine,” is one of assembly, a way of bringing “inter-medial and cross-cultural perspective[s]” in dialogue with one another in order to help individuals rethink experiences from and of the body, both in and out of medical and institutional settings.12

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Travel Stories “Grief, as it transpires, has its own territory,” writes Kay Redfield Jamison in the prologue to Nothing Was the Same (2009), her book about the loss of her husband, Richard Wyatt, to cancer. “It provides a path, albeit a broken one, by which those who grieve can find their way.”13 Jamison’s words evoke what Marta Bladek refers to as “the spatiality of mourning.”14 In addition to the literal places and settings in which people recall (whether joyfully or with pain), or suppress, memories of their losses, grief is often depicted figurally using spatial terms, specifically as a “journey” to a previously unexplored or unknown setting.15 “Katherine’s death had sent me into the dark wood,” writes Joseph Luzzi in his memoir of loss, “a new dimension of life that I had never imagined existed.”16 In both Jamison’s and Luzzi’s works, as in most grief memoirs, this spatial component of grieving is inevitably tied to a temporal one, whether explicitly (e.g., “as it transpires”) or implicitly. Their books unfold in some kind of order, however creative the arrangement: of togetherness, losing, loss, and the aftermath to that loss.17

The majority of Nilsen’s ninety-plus-page book—up until page sixty-five,

which begins a section titled “The Hospital”—testifies to their time together, which includes time together while apart, before her illness. The text is divided into eight sections, each including a title page utilizing a consistent, uniting font: “Postcards from Her to Him,” “The Camping Trip,” “Miscellaneous,” “Air France,” “France,” “The Hospital,” “The Lake,” and “Postcards from him to her.”18 In this manner, the work’s overarching structure provides a trajectory of a life lived together, and a little bit after; it charts a loose chronology mapped onto both real and imagined places, commingling the spatial and the temporal as well as the here and there, the now and then. Nilsen describes his composition thusly: “The book is a collection of travel stories, of trips we went on together, literal or figurative, and some we went on separately, correspondence when we were separated and of disasters, both minor and great and irrevocable.”19 With this language, and in the manifestation of such related contrasts and pairings throughout, there seems to be an attempt to gather and mix, so that places and events, always tied to memories, appear out of order but still connected. The titling and related arrangement of various representations of these once-scattered trips and experiences are reminders that the past is being collected in the present, constructed as a means of trying to bridge together a life before and a life after.

The composite is thus made apparent not only in the subjects of the sepa-

rate sections of the book but in the mixed forms and formats that make up each section. The work is, for example, bookended by pages displaying pairs of postcards exchanged by the couple early on in their relationship, in sections titled, as mentioned, “Postcards from Her to Him” and “Postcards from him to her.” Two distinct but bonded aesthetic voices and styles emerge from these mini-collections of four pieces each. She sends three short, quirky, and enigmatic prose-poems typed up and centered in a blank white space. “So, next time you’re

Assembling a Shared Life

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speeding / Honk and wave when you race by. / Honk and wave,” she writes on one, a tiny poem, however tongue-in-cheek, that in this context seems to capture the longing and nostalgia that the bereaved might feel in looking back.20 In the 26

final chapter, Nilsen’s postcards, in contrast, are pictured only from the back, so neither addressee nor stamps are visible, offering more centrally the perspective not of writer but recipient. Two include illustrations paired with handwritten words, characteristic slices of the kind of work, comics, that Nilsen was already known for at the time and that encompass the majority of his published work.21

These tiny assemblies, collections united in the book, stand in for disparate

but ultimately mutual realities, a visual synecdoche of sorts; here are souvenirs left by a pair of individuals reaching across time and space, employing seemingly irrelevant, mostly disjointed details to communicate. Each works out a distinct way of upholding her or his part of the conversation using images and words, and a close look reveals some common motifs and formats: of movement and flight, of fragmentation and collage, of the proximity between different forms of life—animals and insects and humans—and the convergence of metropolis and wilderness, city and country. The appearance of the postcards also discloses separate, if related, poetic and aesthetic processes and styles, the product of two individuals (both artists, though each with a different area of focus) creating apart from each other, alone in the making.22 Reproduced, these are traces of a once-vibrant and spanning exchange, of a past, shared, remembered, and brought together, however precariously, in the present.

Miscellaneous Selves Nilsen presents a variety of representations of places traveled, each image or narrative piece offering a unique perspective presented in its own particular mode and register. There are several chapters that open with pictures of maps, a distant and depersonalized view, one map paired clearly with a place-name (“France”), another ambiguously paired without one (“Miscellaneous”). There are reproductions of photographs, some in full color, some in somber black and white—of landscapes, of landmarks, of Cheryl and Anders.23 When pictured, sometimes the two appear separately and sometimes together, calling attention to the fact that each of them was, at various points, likely involved in taking those pictures, positioned behind a camera lens while the other stood proximate but apart. There are comics and illustrated diary entries, always composed by Nilsen in his hand and offering still other points of view to these places and occasions. In one chapter, for example, “Air France,” Nilsen presents a loose, cartoonishly composed four-page sequential graphic narrative, a humorously conveyed recap of a series of mishaps that prevented the couple from taking a trip to France as planned.24 Over the course of this comic, at times he presents scenes of the pair at home or in public, pictured as though from an imaginary outside observer; at other times, he relates an outsider’s perspective but

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captures moments with only his alter ego in sight, Cheryl somewhere outside the frame.

With this mosaic, a piecing together of a variety of points of view, some-

times shared and sometimes passed along, Nilsen discloses a sense of being together, even before the inevitable break, as always having been something of a splintered state. They are, solidly, a couple, in one panel from the aforementioned comic, for instance, pictured in bed together, their parallel bodies sharing a joint exclamation in the form of a single word bubble.25 Halfway through the following chapter, they are depicted in a set of near-identical photographs, heads tilted toward each other in each, expressions nearly the same.26 Using different means, these images all testify to their togetherness: the bond they shared and the commitment they made to each other. But the loss, while worlds away from the life they lived beforehand, nonetheless seems loosely foretold in the structure of the book, its pieced-together sections revealing how even individuals who share a life hold their own distinctive worldviews, live their separate lives, all the while. Some things cannot, will not, ever truly be shared.

“This home—without my husband—is not possible for me to consider,” writes

Joyce Carol Oates in her memoir, A Widow’s Story (2011), at the beginning of the second section, “Free Fall.”27 This is the point in the narrative when she has to grapple for the first time with life after loss. For Oates, the shock of her husband’s death is inseparable from her now-disturbed sense of self. She takes on her new identity, widow, tentatively, sometimes writing the word with a capital W, sometimes discussing “the widow” from a third-person distance, as though she were writing about someone else. “For a widow inhabits a tale not of her own telling,” she writes at one point, calling attention to the devastating loss of a cohesive sense of self that such an event often engenders.28 “The real shock of a reader of A Widow’s Story arises not from sudden spousal loss,” writes Jeffrey Berman, “but from Oates’s almost unrecognizable self-portrait.”29 A grief memoir can be as much a story about the nature of a life once shared, of an individual now absent, as a tale tracking a broken sense of self. In telling his story, the bereaved often searches for a means of finding continuity between what feels like a split: from a previous self to a self “after.”30

At several points in the narrative, Nilsen includes reproduced snippets from

the past, in the form of photographs and diary entries often paired in proximity to retrospective reflections. For example, in the “Miscellaneous” chapter, made up of four pages with the image of an unmarked map of New Jersey inaugurating the sequence, he includes two sets of pages that address seemingly unrelated events.31 The first two pages include a couple of photographs with a narrative handwritten underneath, a self-contained story of a Christmas spent together in 2003. As the narrator conveys, the pair set off on a road trip, but several hours in Cheryl fell asleep at the wheel, the car careened off the highway, and they ended up stranded in New Jersey. The description of the experience was written in retrospect, ending as it does with the narrator’s reflection that, despite the Assembling a Shared Life

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near-disastrous crash, “it was actually a really nice Christmas.”32 The couple looks amused, first slightly and then more so, in the accompanying photographs, which testify to their willingness to create a record of this unanticipated event, thereby 28

transforming it from a misadventure to an experience they want to remember.

Turning the page, the reader is confronted with what appears to be a completely

disconnected set of pages. Against a bright white background, the oversized, bubble-lettered heading at the top of the first in this set of images reads, “1 ● 03 ● 05.” “I’m grumpy. Bad mood,” the scrawled diary entry below announces. With this suddenly dated page, the narrator now seems desperately alone with his words and mood, even from within the comfort of his as yet undisturbed past life. The entry is dated two months before Weaver’s original cancer diagnosis.33 With the conjunction of diary entries and photographs—two modalities generally, though misleadingly, thought to supply unmediated, direct connections to the past—alongside a retrospective framing of past events, Nilsen joins together various, sometimes competing versions of his past and present selves, even as the attempt at such an assembly reinforces the futility of such an endeavor.34 The book, meant to recreate unities of various kinds, in the end evidences the false promise of any such proof of cohesion.

“Not Even Here” “Why do I tell you these things? / You are not even here.”35 So read the final lines of the late John Ashbery’s poem, “This Room.” Throughout most of this composition of grief, Ashbery’s narrator is painfully alone with his thoughts, mourning a time passed and a loss, whether of his own past self or of some beloved other, or both. In these final lines, a “you” suddenly, more concretely, emerges, some absent presence to whom the narrator seems to have been addressing the poem all along. The interrupting “even” in the final, declarative words of the poem, “not here,” suggests an abruptly disturbed reverie: a presence that, against all odds and in the midst of the narrator’s deepest, most absorbing solitude, has made itself known. The loss is painfully felt, the other is no longer, but something— still, even—lingers.

In a 2016 article, philosopher Kathryn J. Norlock describes what therapists

sometimes refer to as “imaginal relationships,” or relationships with loved ones who have died that can potentially be considered forms of “real relationships” as opposed to entirely fantastical constructions.36 As she argues, building not only on philosophical works in metaphysics and psychological literature on bereavement but also individual narratives of grief, “the relationships bereaved persons may maintain with the dead are meaningful even when they are no longer reciprocal, and not merely limited to past impressions.”37 In other words, there is the potential for continued, active interaction with our loved ones after death.

Throughout Don’t Go, Nilsen builds on the “absent presence” of his lover,

including photographs and drawings of her at various stages of life and through

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her illness, and also providing an assortment of conversational moments— scenes when her presence surfaces as an active recipient of, or agent for, his dispatches. In the second chapter of the book, “The Camping Trip,” for example, Nilsen includes a photocopy of a twenty-one-page undated letter, handwritten on white lined paper and set against a clean, gray background.38 Directed at his sister, here the letter writer, Anders, recalls an impromptu camping trip the couple made one summer out on Lake Michigan. He catalogues all of the, in the end, amusing misadventures that befell them: squirrels in their tent, flies on the beach, lost (and eventually found) car keys, dead flashlight batteries.

The letter is scribbled in Nilsen’s handwriting, and its reproduction not only

bears out a narration of events recollected but also bespeaks the time and effort involved in the letter’s composition. “So, my dear sister, that’s the story of our camping trip,” the letter’s concluding paragraph begins.39 This mention of the letter’s original addressee, generally though not completely remote since the “Dear Ella” that opens the letter, takes readers out of the transformed context of the reprinted document. If originally part of a discourse with an absent sister, a sister to whom the letter writer, Anders, in writing the detailed letter intends to express care and a sense of how she is missed—“I wish I could be there with you all,” he declares toward the very end40—the letter now stands as both a testament and a call to another, more absolutely absent beloved, Cheryl.

And just as the response of the original intended recipient of the letter, Nilsen’s

sister, is not included here, we do not ever see a direct response from the subject of this whole project, Cheryl. But that does not mean that her presence is not keenly felt, especially in such open-ended forms of address. Indeed, analogous to the postcards that open and close the book, the letter testifies to the spaces between, the gaps around which relationships, and conversations—those building blocks to relationships—take shape. These gaps become spaces from which the absent Cheryl’s presence can be felt, from which she is “not even here.”

Beyond the letter, there are a variety of visual markers testifying to such

conversational moments, instances tracking the “imaginal relationship” that the book both bears witness to and enacts. Nilsen explains of the second collection of images included in the “France” chapter, which consists mainly of photographs: “The black and white pictures were not intended to be, or to seem, poignant. That was simply the roll of film that was in the camera that day.”41 Indeed, one such shot, the second half of the aforementioned set of photographs of the couple with their faces closely nestled together, reveals a double exposure of Cheryl’s face glancing sideways off the page.42 This shadow image is not the only such photograph or image that seems, in retrospect, to forecast an impending future absence. Another photograph in full color depicts the side of a highway, and seems unnotable in the context of other nondescript and unpeopled landscape images included in the set (see fig. 2.1).43 But there is an arrow, obviously added by Nilsen later on, pointing to a standing cardboard shape of a formless cartoon body on the highway. Assembling a Shared Life

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2.1  Anders Nilsen, Don’t Go Where I Can’t Follow (Montreal: Drawn & Quarterly, 2012), 50 (bottom half of page).



The caption explains, “Cut-out silhouettes like the one on the right were a

regular feature of the landscape along the road. Presumably they mark the site of a fatality.” Death was all around us, Nilsen’s retrospective annotations seem to say, as though Cheryl were already communicating with him, from beyond the land of the living, while they were both still alive together. The beloved’s future absence seems consistently to have been part of this past shared life; similarly, her active presence in her bereaved lover’s life without her, in the varied ways she is seen and felt throughout the text as a presence that is somehow still active, engaged, and in conversation, seems distinctive and “real.”

Gathering Together As the book comes to a close, in one of its final chapters, “The Hospital,” Nilsen depicts his lover in the throes of her illness. He seems to be turning inward, as a series of journal entries relays. These trace his attempts to come to grips with what is happening through language: a recording of Cheryl’s various ailments, the nonsensical phrases she has been uttering, as well as his own emotional turmoil, the “waiting waiting waiting” that now takes up all of his time and energy.44 The Pathographics

entries testify to an increasing divide between their perspectives: “I can’t know what it’s like,” he remarks, describing the increased distance between them even as he sits right beside her.

In addition to these journal entries, he includes four careful illustrations of

her in her hospital bed. In one of these drawings, only her head is visible as it tilts to the side, her eyes closed though covered with glasses.45 Two fingers are illustrated, cradling the top of her forehead. Her head is titled in the direction of those fingers, as though in sleep she can nonetheless discern a modest presence, an extension of the eyes looking at her as her body falters, the hands taking down the details. There is also an oddly placed close-up drawing of her ear, a copy, drawn just off to the side of the sketch of her face and signifying another potential connection between her and the rest of the slowly disappearing world: the voice or voices that speak to her from the sidelines.46

In words and illustrations, Nilsen seems to move among connecting with

his lover, taking in and putting down her experiences, and feeling jostled by the recognition that they now face the world from hopelessly incongruent positions. Throughout, particularly in his drawings of her, he searches for what he can continue to give her as she fades away, however feeble his offerings; this turns out to be his attention, his focus.47 Above the final illustration of her drawn-fromlife, dated November 7, six days before she died, she is pictured in a careful sketch that tracks in painstaking detail the lines on her pillow, the hairs on her head.48 Her mouth rests slightly open, her eyes closed. Alongside the horror of this slow and steady division from the person he once knew, perhaps even because of it, there is the potential for new kinds of intimacy, new ways of paying attention to his partner who, though dying, is still very much alive.

This chapter is followed by “The Lake,” a sequential illustrated narrative

in which the narrator describes a memorial ceremony that took place several months after Cheryl’s death and concluded with his spreading her ashes into the water of Lake Michigan, close to where they had lived together. The chapter is set apart from the rest of the book because it is composed as a direct address to the now-departed beloved, it depicts a life after her death, and it does not include page numbers. The eight-page narrative consists of two large, rectangular panels per page drawn in black and white ink, with words neatly laid out. In contrast to the journal entries and illustrations included in the previous chapter, in this one Nilsen seems more invested in creating order, a careful chronological composition borne from the chaos of grief.

The chapter also differs from the rest of the book because other individu-

als outside the couple are largely featured. In its opening pages, Nilsen depicts a number of people walking together, including a version of himself. Only the backs of these figures are visible. This posture brings to mind an earlier cartoon of the lovers leaving France together, an image included on the page before “The Hospital” chapter opens, before Cheryl’s final illness, and also featured on the title page to the book (see fig. 2.2).49 Assembling a Shared Life

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2.2  Anders Nilsen, Don’t Go Where I Can’t Follow (Montreal: Drawn & Quarterly, 2012), title page.



At this point, Anders has become part of an anonymous, assembling crowd,

instead of his previous posture as half a couple. Captured in the book, the previous images of the couple together linger in the wake of these substitute images; the drawings exist in conversation.

The words tacked between the early panels tell the story of his sense of isola-

tion even in the moving, growing cluster, how distant he feels from everyone around him. As he writes between these opening images, he cannot, in fact, clearly remember who accompanied him on this walk—“I think Adam. Probably my Pathographics

mom.”50 His desire is for separation, to remain, impossibly, as part of that earlier couple: “When we started out everyone was behind me, following. I stopped for a while and let them pass. You are in my arms.” Despite this description and the desire it conveys, in the first seven images he is increasingly visually part of the crowd, only a hint of what is in his arms even evident. Eventually, in the eighth panel, the perspective shifts from a seeming invisible presence behind him and the crowd watching all of them to a view of him emerging separately. He can be seen climbing down the rocks alone, one arm grasping a box holding her ashes, another leaning on a boulder for support. The crowd is visible behind him, gathered at a distance, their bodies all drawn as outlined silhouettes in contrast to his more carefully composed and shadowed individual, scrambling body.

In “Grief as a Social Emotion,” Nina R. Jakoby argues for “grief [to be] seen as

a social emotion and interpersonal process because it emerges from relationships, attachments, expectations, and obligations.”51 Jakoby helpfully points out that attending to such a sociological perspective can help us understand grief not as a pathological condition separating the individual from his community but as on a continuum with other kinds of ever-shifting social relationships and networks. In this way, we might better make sense of how individuals cope with loss by paying attention to “the structural conditions surrounding the life of the survivors,”52 their interactions with groups of people around them. Nilsen’s graphic narrative at the end of this memorial book emphasizes how bereavement can make an individual feel separate and distant from his community, from all communities, in fact. But the narrative also presents that community as a potential anchor for the individual alone in his grief. Even in this ultimate form of solitude—he is pictured alone on the rocks on the top of the second to last page, an image of the empty landscape where her ashes were just scattered visible on the bottom half of the page—the narrative reveals that the presence of others still looms (see fig. 2.3).53 New or revised forms of intimacy await. “When the bag was empty I just wanted to sit and sob and collapse into the water with you and disappear,” he writes on the same page, reflecting a desire to follow his beloved into death: “That feeling lasted many days. But I didn’t collapse. I got up and went back onto the grass. Got hugs. Cried some more and walked back. Later Ella sang for you, Jim and Lea and Mike played some Elizabeth I songs. People said a lot of nice things.”54 With this final sequence, even while visually depicting a sense of being painfully alone, the narrator depicts others, too, surrounding him. His figure, though solitary on the rocks, approaches a community. Via an assembly of images and words, the comic merges a powerful sense of solitude with a possibility of meeting others in spaces where they are willing to wait.

As a form of address that readers of Nilsen’s work can all bear witness to,

they—we—also become part of this community of grievers. The final visual narrative, which encapsulates the structure of assembly that characterizes the book as a whole, extends the site of communal affiliation beyond those who knew Cheryl in life and honors the ways that the relationship memorialized in this book was Assembling a Shared Life

33

34

2.3  Anders Nilsen, Don’t Go Where I Can’t Follow (Montreal: Drawn & Quarterly, 2012), 85.

Pathographics

always more than the sum of its parts, a conversation not limited to two people but always taking place between and among many others. 35

Conclusion In Ann Jurecic’s Illness as Narrative, a book published three years before the review of grief memoirs mentioned in the opening to this essay, she argues that memoirs about illness can only be fully understood by carefully considering how critics have thought about these texts in the past.55 Utilizing French philosopher Paul Ricoeur’s notion of “listening” as a form of staying open to what different narratives seek to tell us, Jurecic argues that critics need to find “interpretive approaches that enable them to assemble meaning in the face of life’s fragility.”56 Later in her opening chapter, she invokes the word assembly once again, this time connecting her call for “listening” with Bruno Latour’s 2004 invocation for new forms of critique in the face of what he then called “these most depressing times.”57 As he writes in the closing to his essay, “The critic is not the one who debunks, but the one who assembles. The critic is not the one who lifts the rugs from under the feet of naïve believers, but the one who offers the participants arenas in which to gather.”58

If we “listen” closely to Nilsen’s grief memoir, we might find in it such a

meeting place, not just for or by critics but of readers, where different forms of searching and documenting, testifying and mourning, might come together. The work of grieving requires a recognition that we all, at some point, will take turns not only as grievers but also as grieved ones. “It is essential to speak of death and the dead,” writes Sandra M. Gilbert, “because if those who have died are still part of us even while they are part of death, then death is part of us too.”59 Reading Nilsen’s work, we are reminded that such activities might engage us as much with our own processes of grieving, whether preliminary or ongoing, as with the singular, untranslatable grief of another.

Notes 1. Ann Jurecic, “No Protocol for Grief,” Lancet 386, no. 9996 (2015): 848. Sandra M. Gilbert, in “The Way We Grieve Now,” Chronicle of Higher Education, January 3, 2016, asks: “How and why . . . has [the grief memoir] become so popular among writers and so compelling—and controversial—to readers?” She speculates that the reason has to do with “widespread cultural confusion about how and where to mourn in an increasingly secular society.” Marta Bladek, in “‘A Place None of Us Know Until We Reach It’: Mapping Grief and Memory in Joan Didion’s The Year of Magical Thinking,” Biography 37, no. 4 (Fall 2014): 935, additionally points out that “current demographic patterns of spousal

loss” might explain the boom of grief memoirs related to this type of loss. For a book-length study of such “spousal loss memoirs,” see Jeffrey Berman, Writing Widowhood: The Landscapes of Bereavement (Albany: State University of New York Press, 2015). 2. Amy-Katerini Prodromou, Navigating Loss in Women’s Contemporary Memoir (New York: Palgrave, 2015), 7. Prodromou does a thorough job of reviewing professional literature published on grief from the 1950s on and covering some of the “new wave theories” that have developed, not without contention, over the past thirty years or so. See chapter 1 of Navigating Loss, “Life Writing and the Literature

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of Grief,” 13–33. For another overview of existing models of grief, in this case from two clinical psychologists, see Fiona Maccallum and Richard A. Bryant, “A Cognitive Attachment Model of Prolonged Grief: Integrating Attachments, Memory, and Identity,” Clinical Psychology Review 33, no. 6 (2013): 713–27. See also clinical psychologist and researcher Robert A. Neimeyer’s 2001 edited collection, Meaning Reconstruction and the Experience of Loss (Washington, D.C.: American Psychological Association, 2001). In his introduction, “Meaning Reconstruction and Loss,” Neimeyer calls for “a grief theory for the 21st century,” an individualistic one that he describes as “founded on the postulate that meaning reconstruction in response to a loss is the central process in grieving” (4; emphasis original). 3. Prodromou, Navigating Loss, 8. 4. Jurecic, “No Protocol for Grief,” 849. For a definition of the subgenre of grief memoirs, see Kathleen Fowler, “‘So New, So New’: Art and Heart in Women’s Grief Memoirs,” Women’s Studies 36 (2007): 527. As she explains, “What distinguishes the grief memoir from other literary treatments of grief is that the death, the loss, the grieving is the defining reality— the heart of the text” (emphasis original). 5. Jurecic, “No Protocol for Grief,” 849; emphasis added. 6. Ibid. As she explains, “The word essay, which stems from the French verb essayer, means an attempt, and the fundamental work of essay-ing is to experiment with ideas” (849). 7. Ibid. See also Michael I. Norton and Francesca Gino, “Rituals Alleviate Grieving for Loved Ones, Lovers, and Lotteries,” Journal of Experimental Psychology 143, no. 1 (2014): 266. As they analogously argue, there are, broadly speaking, innumerous “rituals of mourning in the face of loss” across time and place, and these rituals are “so common” as to at times contradict one another across cultures. 8. Anders Nilsen, Don’t Go Where I Can’t Follow (Drawn & Quarterly, 2012). All references in this essay refer to the republished text. As Nilsen writes in an “Author’s Note” on the back page, he had originally intended to self-publish a handful of copies just for family and friends, to distribute at Weaver’s memorial. When he could not manage to put out enough copies on his own, Drawn & Quarterly stepped in and eventually the book found an even broader audience, leading to its second print run. 9. Ibid., “Afterword,” n.p. 10. “Assembly, n.” OED Online. September 2019. Oxford University Press. https://‌www ‌‑oed‌‑com‌.ezproxy‌.gc‌.cuny‌.edu‌/view‌/Entry /‌ 11795‌?redirectedFrom‌=assembly‌&. My

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understanding of the term as, simply put, “a gathering of things together into unities” can also be traced to Thomas Nail, “What Is an Assemblage?” SubStance #142 46, no. 1 (2017): 22. Nail distinguishes “the English word ‘assemblage,’ [which] according to the Oxford English Dictionary, comes from the French word assemblage (a-sahn-blazh), not the French word agencer.” 11. Nilsen published a second related book, The End (Seattle: Fantagraphics, 2013). This one takes up the question of grief in a memoir that is still “experimental” and hybrid in form but composed primarily of drawn images and text. In the interest of space, I do not take up the second memoir here, but more could be said about this notion of “assembly” in examining the texts in relation to each other. 12. From the PathoGraphics website: http://‌www‌.geisteswissenschaften‌.fu‌‑berlin‌ .de‌/friedrichschlegel‌/assoziierte‌_projekte‌ /Pathographics‌/sl‌_2‌_ABOUT‌/index‌.html. 13. Kay Redfield Jamison, Nothing Was the Same (New York: Alfred A. Knopf, 2009), 5. 14. Bladek, “‘A Place None of Us Know,’” 937. 15. Fowler, “‘So New, So New,’” 528. As she writes, “one central theme regularly recurs in the grief memoir—the sense of finding oneself navigating uncharted territory.” 16. Joseph Luzzi, In a Dark Wood (New York: Harper Perennial, 2015), 45. 17. Though all grief memoirs track individual experiences with countless differences, an important distinction to keep in mind in cataloguing such memoirs, when such a taxonomy is useful, is that of death following long or protracted illness and sudden, unexpected death, within days, hours, or even minutes of an initial life-ending catastrophe. 18. The discrepant capitalization is true to the text. Also of note, two additional sections tacked on at the very end of the book without title pages are “Afterword” and “Author’s Note,” the latter of which is dated July 2012. 19. Nilsen, “Afterword,” Don’t Go Where I Can’t Follow, n.p. 20. Ibid., 6. 21. Ibid., 89. 22. See Jessica Hopper, “Grief Made Graphic,” Chicago Reader, September 6, 2007. https://‌www‌ .chicagoreader‌.com‌/chicago‌/grief‌‑made‌‑graphic ‌/Content‌?oid‌=‌925842. Hopper describes a visit to Nilsen’s apartment around that time, when she saw one of Weaver’s photos hanging in his living room. “Weaver was an artist, and when she lived here, shooting the park through the seasons was an ongoing project,” Hopper explains. The two met in 1999 at the School of the Art Institute of Chicago, where Nilsen had

come to study painting, though he soon left to work on comics full time. Weaver was a graduate student there, working on “experimental film and video.” 23. Throughout this essay, I refer to Weaver by her first name only, “Cheryl,” and Nilsen by his first name only, “Anders,” when I am pointing to intimate moments from within the text, in order to better match the tones of the sections of the book with which I engage. 24. Nilsen, Don’t Go Where I Can’t Follow, 38–41. 25. Ibid., 38. 26. Ibid., 58. 27. Joyce Carol Oates, A Widow’s Story (New York: Ecco, 2011), 65. 28. Ibid., 81. 29. Berman, Writing Widowhood, 2–3. 30. Much of the professional literature echoes this point. See Neimeyer, “Introduction,” 4. As he points out, a “major loss” has “implications . . . for the individual’s sense of identity, often necessitating deep revisions in his or her self-definition.” See also Arthur W. Frank, The Wounded Storyteller (Chicago: University of Chicago Press, 1995), for more on a similar function of writing for illness memoirists. 31. Nilsen, Don’t Go Where I Can’t Follow, 31–35. 32. Ibid., 33. The book was started during Weaver’s life, as Nilsen makes clear in his “Afterword,” so it is not certain whether this “retrospective” narration was composed after she was diagnosed but still alive or after her death. As he explains, “I’d intended, before the seriousness of Cheryl’s illness was clear, to do a small book with some of this material, for friends and family.” 33. Ibid., “Afterword,” n.p. 34. See Kylie Cardell’s study, Dear World: Contemporary Uses of the Diary (Madison: University of Wisconsin Press, 2014), 5. There she lays out, and derides, the various “myths” surrounding diary as a mode, exposing, for example, the false assumptions that all diaries provide “raw,” “unself-conscious,” and “unmediated” displays of the thoughts and feelings of individuals who write them. For foundational critical readings of the myths surrounding photographs, and particularly images of people, see Susan Sontag’s On Photography (London: Picador, 2001) and Roland Barthes’s Camera Lucida (New York: Hill and Wang, 1982). 35. John Ashbery, “This Room,” https://‌www .‌ poetryfoundation‌.org‌/poetrymagazine‌/poems /‌ 56431‌/this‌‑room‌‑56d238eb55158. 36. Kathryn J. Norlock, “Real (and) Imaginal Relationships with the Dead,” Journal of Value Inquiry 51, no. 2 (2017): 341–56.

37. Ibid., 342. 38. Nilsen, Don’t Go Where I Can’t Follow, 10–30. 39. Ibid., 30. 40. Ibid. 41. Ibid., “Afterword,” n.p. 42. Ibid., 58. 43. Ibid., 50. 44. Ibid., 68. 45. Ibid., 71. 46. Many professionals and caretakers who have experiences of being in the room with people who are dying believe that hearing is the last sense to function, though this has not been definitively proven. See, for instance, https://‌www‌.dyingmatters‌.org‌/page‌/being ‌‑someone‌‑when‌‑they‌‑die. 47. See Roz Chast, Can’t We Talk About Something More Pleasant? (New York: Bloomsbury, 2014), 211–22, for another visual memoirist who does this. In the final chapter of her memoir about her parents’ lives and deaths, she includes illustrations of her mother in the final months of life. 48. Nilsen, Don’t Go Where I Can’t Follow, 72. There is one additional image of her toward the end of the chapter: a cartoonish version of her suspended, as though in space, with mechanisms and tubes connected to her and carefully labeled. This image could be said to be a drawing of her neither alive nor dead but somehow in between (74). 49. Ibid., 64. The figure included here is from the title page. 50. Ibid., “The Lake,” n.p. 51. Nina R. Jakoby, “Grief as a Social Emotion,” Death Studies 35 (2012): 680. 52. Ibid., 695. 53. Ibid., “The Lake,” n.p. 54. Ibid. 55. Jurecic, Illness as Narrative (Pittsburgh: University of Pittsburgh Press, 2012), 2. 56. Ibid., 4. See also Paul Ricoeur, Freud and Philosophy, trans. Denis Savage (New Haven: Yale University Press, 1977). 57. Bruno Latour, “Why Has Critique Run Out of Steam? From Matters of Fact to Matters of Concern,” Critical Inquiry 30, no. 2 (Winter 2004): 226. 58. Ibid., 246. 59. Sandra M. Gilbert, Death’s Door (New York: W. W. Norton, 2006), 16.

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References

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Ashbery, John. “This Room.” https://‌www.poetry foundation‌.org‌/poetrymagazine‌/poems ‌/56431‌/this‌‑room‌‑56d238eb55158. Barthes, Roland. Camera Lucida. New York: Hill and Wang, 1982. Berman, Jeffrey. Writing Widowhood: The Landscapes of Bereavement. Albany: State University of New York Press, 2015. Bladek, Marta. “‘A Place None of Us Know Until We Reach It’: Mapping Grief and Memory in Joan Didion’s The Year of Magical Thinking.” Biography 37, no. 4 (Fall 2014): 935–52. Cardell, Kylie. Dear World: Contemporary Uses of the Diary. Madison: University of Wisconsin Press, 2014. Chast, Roz. Can’t We Talk About Something More Pleasant? New York: Bloomsbury, 2014. Fowler, Kathleen. “‘So New, So New’: Art and Heart in Women’s Grief Memoirs,” Women’s Studies 36 (2007): 525–49. Frank, Arthur W. The Wounded Storyteller. Chicago: University of Chicago Press, 1995. Gilbert, Sandra M. Death’s Door. New York: W. W. Norton, 2006. ———. “The Way We Grieve Now.” Chronicle of Higher Education, January 3, 2016, n.p. Hopper, Jessica. “Grief Made Graphic.” Chicago Reader, September 6, 2007. https:// ‌www.chicagoreader‌.com‌/chicago‌/grief‌ ‑made‌‑graphic‌/Content‌?oid‌=‌925842. Jakoby, Nina R. “Grief as a Social Emotion.” Death Studies 35 (2012): 679–711. Jamison, Kay Redfield. Nothing Was the Same. New York: Alfred A. Knopf, 2009. Jurecic, Ann. Illness as Narrative. Pittsburgh: University of Pittsburgh Press, 2012. ———. “No Protocol for Grief.” Lancet 386, no. 9996 (2015): 848–49.

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Latour, Bruno. “Why Has Critique Run Out of Steam? From Matters of Fact to Matters of Concern.” Critical Inquiry 30, no. 2 (Winter 2004): 225–48. Luzzi, Joseph. In a Dark Wood. New York: Harper Perennial, 2015. Maccallum, Fiona, and Richard A. Bryant. “A Cognitive Attachment Model of Prolonged Grief: Integrating Attachments, Memory, and Identity.” Clinical Psychology Review 33, no. 6 (2013): 713–27. Nail, Thomas. “What Is an Assemblage?” SubStance #142 46, no. 1 (2017): 21–37. Neimeyer, Robert A. “Introduction: Meaning Reconstruction and Loss.” In Niemeyer, Meaning Reconstruction, 1–9. ———, ed. Meaning Reconstruction and the Experience of Loss. Washington, D.C.: American Psychological Association, 2001. Nilsen, Anders. Don’t Go Where I Can’t Follow. Montreal: Drawn & Quarterly, 2012. ———. The End. Seattle: Fantagraphics, 2013. Norlock, Kathryn J. “Real (and) Imaginal Relationships with the Dead.” Journal of Value Inquiry 51, no. 2 (2017): 341–56. Norton, Michael I., and Francesca Gino. “Rituals Alleviate Grieving for Loved Ones, Lovers, and Lotteries.” Journal of Experimental Psychology 143, no. 1 (2014): 266–72. Oates, Joyce Carol. A Widow’s Story. New York: Ecco, 2011. Prodromou, Amy-Katerini. Navigating Loss in Women’s Contemporary Memoir. New York: Palgrave, 2015. Ricoeur, Paul. Freud and Philosophy. Translated by Denis Savage. New Haven: Yale University Press, 1977. Sontag, Susan. On Photography. London: Picador, 2001.

3

Ways of Looking Reading PathoGraphics Nina Schmidt

What are the tools at our disposal that seem particularly promising, and what is adequate reading when analyzing illness narratives in both their written and drawn (or otherwise visualized) forms from a literary/cultural studies point of view? These questions originate from a sustained interest in ways of looking at illness narratives in an academic context, namely German literary studies, that still has reservations about the study of representations of illness/disability. They frame the essay at hand. To address them, I proceed from ways of looking as they are negotiated within narratives of illness/disability, or PathoGraphics1—which they frequently are—before moving to common ways both the academy and the wider public look at PathoGraphics. The aim is to link phenomena I observe in individual examples to reflections about the nature and reception of contemporary PathoGraphics more widely.

Maybe unsurprisingly, ways of looking matter in the context of illness/

disability. Disability studies scholars know this, and I draw my conceptual framework from them. As Lennard J. Davis phrases it, disability often is “a specular moment”2—consequently, it is represented as such, including in literature that does completely without visual imagery. In everyday social interactions, disability tends to be determined visually, because of one’s outward appearance or noticeable functional limitations of one’s body: “The missing limb, blind gaze, use of sign language, wheelchair or prosthesis is seen by the ‘normal’ observer [as are erratic or awkward movements].”3 Rosemarie Garland-Thomson describes this seeing as a process of “uneasy identification”: “Why, we ask with our eyes, does that person

3.1  María Gallardo and Miguel

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Gallardo, María y yo (Bilbao: Astiberri, 2007), seventh of eleven panels on the page. Translation: “What a spoiled girl!!” (more literally, “Have you ever seen such a spoiled girl!!”) / “You’re telling me, lady!” (translation mine).

with dwarfism, that amputee, that drooler, look so much like and yet so different from me?”4 Davis stresses the dominance and violence this gaze can exert on the person living with disability—and the “powerful emotional responses” to impairment/disability this gaze is accompanied with in the observer. He writes, “These responses can include horror, fear, pity, compassion, and avoidance.”5 Contemporary literature and comics write (and draw) these complex interactions into consciousness by finding the words and imagery or iconography to portray them, as well as inviting readers to “look” at (other) ill/disabled people without their having to bear the full force of direct affective consequences engendered by real-life encounters.

As texts that are naturally at pains to get across something of the texture

of the lived reality of disability to audiences growing in number and diversity, disability memoirs almost always address this specularity. In María y yo (Maria and I)—a visual journal by Spanish comics artist Miguel Gallardo of a holiday spent in the Canaries with his autistic daughter, María, that aims to educate about autism while documenting the good times being had—inevitably, others’ looks feature from the beginning.6

As María shouts down the airport they have to rush through, she catches

others’ eyes, not primarily because of the way she moves but because she cannot or is not willing to adapt the pitch of her voice to what is considered appropriate in these surroundings. María becomes the topic of other passengers’ conversation; their reaction is undoubtedly unsympathetic toward her, as both the words and the meaningful glances they exchange make clear in the short time/ Pathographics

space of just one panel (see fig. 3.1). Throughout María y yo, others’ stigmatizing looks at the girl are highlighted as a consistent feature of a father and daughter’s life together. The pair constantly get to feel “the violence of the response” of normative collectivity.7 This violence originates in people not being able or willing to recognize María as an individual with a personality, yet all the while either excessively watching her or consciously avoiding the sight of her. Because “some members of a culture are always accorded more freedom than others,” and excitable disabled girls certainly cannot count themselves as part of that privileged group, they must experience “practices of social exclusion” that, like Elisabeth El Refaie, I take as expressions of “a collective form of abjection.”8 As Davis highlights, common social interaction becomes impossible when, “paradoxically, the observer becomes disabled by his or her reaction to the disabled person.”9 This is exemplified perfectly by the two bystanders in the panel pictured in figure 3.1 and is a phenomenon Miguel Gallardo, as father to María, is both acutely aware of and fed up with. This comes out from a group of sketches captioned “Caras que no me gusta ver en las personas que miran a María” (facial expressions I don’t like to see in people looking at María)—being expressions that hurt and impede understanding as they foreclose level communication (fig. 3.2). But neither does María engage in common social interaction à la Davis. Far from being passive or defenseless, she, too, can dish up a good hard look at people (see fig. 3.3).

3.2  María Gallardo and Miguel Gallardo, María y yo (Bilbao: Astiberri, 2007), bottom half of page.

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42

3.3  María Gallardo and Miguel Gallardo, María y yo (Bilbao: Astiberri, 2007), first panel, bottom half of page. Translation: “Excuse me, young lady, I am going to jump this whole queue because María blah blah blah.” / “Oh . . . but of course, Sir!” (translation mine).



María y yo demonstrates the ever-presence of the gaze at the ill/disabled

person in this father and daughter’s life, echoing its presence in the lives of many who paradoxically live their lives in a state of what is at once invisibility and hypervisibility as they expand “the visual landscape.”10 Taken as a whole, the comic works to influence and alter the way people look at disability. At the same time, however, it reminds us that there is a whole range of other ways of looking at play in encounters with illness/disability besides that of the oppressive gaze. And indeed such different looking can be initiated by the ill or disabled person, as María y yo shows—complicating the picture of who is object and who is subject,11 for example—if these roles can be distinguished so clearly. Contemporary PathoGraphics such as the Gallardos’ book appears to ask us, almost en passant, to pay attention not only to the gaze (though its analysis is important) but to other ways of looking, too, confirming El Refaie’s observation made in the context of her discussion of gendered bodies and the gaze in autobiographical comics “that the social conditions of spectatorship have shifted and become much more complex in recent years.”12

Pathographics

Acts of Staring in Narratives of Illness/Disability Literary narratives of illness/disability also grapple with what happens between people on a visual level.13 Like María y yo and other graphic narratives, they, too, frequently expose these complex ocular interactions as influenced by virulent ideas about ab/normality and lack or excess. The 2009 novel Du stirbst nicht (You won’t die / You are not going to die) by German author Kathrin Schmidt, based on her own experiences of surviving a brain hemorrhage and becoming disabled as a consequence of it, is one example of a text that deals extensively with physical acts of “staring” occurring between its visibly ill/disabled protagonist and others from across the range of dis/ability and ab/normality. These self-conscious thematizations of intense looking are numerous and striking, and they comprise more than merely representations of the classic gaze. They prove meaningful with view to their effect on both the diegetic level—that is, what they make happen between characters and what they mean for plot development—and beyond, namely, on the author-reader level.14 In The Wounded Self, I adapted Rosemarie Garland-Thomson’s theory of staring for literary analysis.15 As Garland-Thomson defines it, “Staring is a more forceful form of looking than glancing, glimpsing, scanning, and other forms of casual looking. Staring is profligate interest, stunned wonder, obsessive ocularity.” 16 These words perfectly describe a significant number of the facial expressions displayed by strangers toward María, as captured by Gallardo in María y yo (see fig. 3.2). Against the backdrop of previous scholarship on the gaze and the discourse about the gaze within disability studies, Garland-Thomson’s work on staring recovers the full complexity of visual interactions. Staring proves a useful tool for analysis because it helps to refocus our understanding of visual encounters between, for instance, a disabled person and somebody who identifies as able-bodied or healthy as, above all, inevitable interactions—both natural and necessary. It does so by directing attention to the stare (and breaking away from a more narrow focus on the gaze, which, as Garland-Thomson shows, is only one manifestation of the stare) as a form of meaning-making and communication, inducing an interchange of looks and, at best, triggering identity work in those involved. This can become a learning experience and ideally leads to a form of visual and philosophical recognition that the scholar calls “beholding.”17 As cannot be emphasized enough, the stare can render all involved parties equally exposed and vulnerable. Garland-Thomson writes, “It can be an inappropriate and mutually embarrassing act. Starers must defend against accusations of vulgar overinvolvement, and starees must defend against intrusive overexposure.”18 In other words, it is a risky interaction for both those who expose themselves to others’ stares (starees, in Garland-Thomson’s vocabulary) as well as those who do the staring.19 This fundamental observation widens interpretative possibilities for literary/cultural studies, as Garland-Thomson’s framework allows us to (also) recognize agency in those typically confined to the position of

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objects—it makes this easier than older and, in this regard, more limited theorizations of the gaze. In Du stirbst nicht, the visual is the dominant plane of protagonist Helene’s 44

subjective experience and consciousness. This is partly due to the fact that her vision remains unimpaired by the stroke she suffers. Hemiplegic, aphasic, and with significant gaps in her memory, Helene worries early on in the novel about the “Bild von sich” (image of herself) she feels she has lost; its recovery occupies the protagonist’s mind for the remainder of the text.20 This search can be linked to the central question the formerly prolific writer dwells on, which is: “Wenn sie jetzt eine Behinderte ist?” (What if now she is a disabled person?).21 She is certainly portrayed as a sight to be stared at: dribbling, in a wheelchair, with limited agility, her head shaved and marks of her operation all over her body. Leaving aside her difficulties with language for the moment, her appearance alone violates normative expectations. The stroke and subsequent medical interventions have caused discrepancies between her self-image and public image and have rendered both problematic.

Helene’s explorative ways of seeing are closely linked to this rift as well as

to her attitude toward the disabled other—which, as Helene awakens from a coma at the onset of the narrative, is also found within the self. In a particular moment of crisis, following a visit by her husband, Matthes, that leaves Helene feeling infantilized, shamed, and misunderstood, she reflects on her appearance and the feelings it triggers: A terrible feeling, to be at others’ mercy, grinning stupidly, and so openly. Only now does she believe to notice that she is indeed smiling excessively: the smallest pleasure pulls her mouth wide, she notices this by now because saliva is dripping. And the joke does not stop here. She is a wide-mouthed frog. Searches for the face in the mirror above the sink. No, she did not yet go goggle-eyed. The fingers are not deformed to little drumsticks, nor are her toes. But she does indeed look a little green. See, Helene: green with rage. She smiles, and there, it overcomes her yet again, toxically roaring rage. Helplessness . . .22

Her disabled state both shames and angers her—because she cannot keep pace with and thus feels inferior to the able-bodied, and because of a basic lack of control over her physical self. At first the reader finds Helene focusing on and finding fault with what she has internalized to be grotesque bodily (re)actions: the smile is too wide, and saliva illicitly trickles from her mouth. However, searching for her image in the mirror affords a moment of reflection in which she realizes that she is not yet quite the laughing stock or monster she fears herself to be. A dialogic situation arises (in her mind, the character addresses her reflection as “du” [you])—one in which various senses of self, old and new, are negotiated through attentive looking.23 In the frank appraisal it enables, staring here is a crucial means for the protagonist to deal with her yet new and unfamiliar

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situation. Through this and other staring encounters with herself as well as with other disabled people around her, the character slowly regains a sense of self over the course of the narrative.24

Toward the end of the book, the reader observes Helene in the role of staree,

negotiating two elderly women’s stares at the bus stop. Her scar and the fact that she cannot stop dribbling attract their attention, or so Helene speculates in a piece of interior monologue: “One of them looks at her with compassion, the other is careful to look away. [What a] shame. Helene forgets time and again that she is still a strange sight for others. And that despite keeping the scar that covers her skull hidden under a hat, so it really can’t look that bad, but these two slender old women are probably still light on their feet, and they can’t imagine what it would be like if they weren’t. Now she does notice the saliva around her mouth after all and can understand the two oldies better.”25

The author’s alter ego26 displays a remarkable amount of empathy for her

starers and their visceral reactions to the extraordinary sight she presents. Not all that long ago, her own view of others was much more restricted, and her own saliva shocked her just the same. The finding now: “lack of imagination” narrows the ladies’ view of Helene, and of life. The protagonist, however, begins to be more comfortable in her own skin. Gradually, she rediscovers composure and contentment despite her impairments.27 Taking the shape of an Entwicklungsroman, the novel as a whole “provide[s] the public with controlled access to lives [or a life] that might otherwise remain opaque or exotic to them”—thus fulfilling a major function, at least in G. Thomas Couser’s view, of disability life writing.28

By addressing the human stare, Schmidt, in fact, goes beyond this pedagogical

aspect: she finds an explicitly literary way of dealing with the great resonance that she correctly anticipated (and thus somewhat preempted) when she wrote illness autobiographically.29 On a meta level, Du stirbst nicht’s aesthetics of staring and mirroring—of mis/recognition and mis/identification—invites the reader’s stare but simultaneously troubles any potential perception of stark difference between themselves and the protagonist. Like more and more literature and comics dealing personally with the themes of illness/disability, the text (in both its form and its content) highlights the manifold ways in which all readers, including those who identify as healthy or able-bodied, are implicated in others’ narrations of illness/disability.

Based on these findings, I contend there is potential to use Garland-Thomson’s

two-way model of staring to theorize more fully the design or communicative intent and the reception of contemporary illness narratives (be they written and/ or drawn).30 Especially in the case of autobiographically motivated narratives, we need to remember that “writing [and publishing] a text is an act in which one makes oneself ‘vulnerable’ to others,” as Peter Brooks, drawing on Derek Attridge, puts it in an essay about the ethics of reading.31 Yet when truly engaging with a text, readers, too, become vulnerable, and the introspection and questioning of Ways of Looking

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internalized beliefs and biases a text such as Du stirbst nicht can prompt will be challenging for many. Next, I turn to two more recently published examples, one literary and one graphic, highlight the kind of “staring” they set up between the 46

authors and their audiences, and examine in what ways they pose a challenge to the reader. These are Wolfgang Herrndorf’s online diary Arbeit und Struktur (Work and Structure; written 2010–13) and Matt Freedman’s graphic journal Relatively Indolent but Relentless: A Cancer Treatment Journal (2014).32

When a Dying Author Returns the Look The German novelist Wolfgang Herrndorf, previously relatively little-known outside of German Popliteratur circles, began a diary blog a few weeks after being diagnosed with a brain tumor. From the moment he made it public for anyone to read, a few months into the endeavor in 2010, it rapidly gained in readership.33 Originally merely a side project to Herrndorf’s fiction writing, the blog grew in importance as his autothanatography, fusing reports of daily mishaps and of the cancer’s progression with the narration of childhood memories and of times spent with friends, as well as becoming a platform for cultural/political commentary, poetological statements, and more. It was to be the last piece of writing he engaged with until days before his suicide on August 26, 2013. The diary was published posthumously in book form. It remains available online.34

With Herrndorf’s glioblastoma being much less of a “specular moment” in the

social encounters of his everyday life than the disability of Schmidt’s protagonist in Du stirbst nicht or María’s autistic behavior as portrayed in María y yo, visual exchanges are not thematized as explicitly in the author’s cancer diary. Yet via a significant number of photographs posted to the blog,35 I argue that something akin to staring encounters is staged nonetheless. The photos’ inclusion is not a must or requirement of the medium, as in the case of the pictorial embodiment (El Refaie’s term) of autobiographical comics—that is, the imperative for the artist “to produce multiple portraits of themselves and . . . engage explicitly with their body images” as they tell their stories.36 The fact that there is no inherent need to picture oneself in blogging or diary writing should encourage us all the more to explore potential reasons for why Herrndorf had such a strong desire to represent the self visually as well as in text. I suggest that the photos are/were a way for the dying and increasingly well-known author to implicitly acknowledge—and challenge—his readership’s relation both to him as a person and to the evolving text.

As the author of an unfolding illness narrative of which he was also the

protagonist, Herrndorf—almost unavoidably—became an ultimate tragic hero in the public eye, one whose approximation of death had a profound effect on the contemporary readership’s imagination. As a diarist, he relinquished the powers he had as a novelist, such as the ability to determine the text’s plot or ending. Instead, he accepted, like all diarists must, that “we are writing a text

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3.4  Screenshot from

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Wolfgang Herrndorf, Arbeit und Struktur (http://​www​ .wolfgang​‑herrndorf​.de), image reproduced on p. 174 of the print edition (Berlin: Rowohlt, 2013).

whose ultimate logic escapes us; we agree to collaborate with an unpredictable and uncontrollable future,” as life writing scholar Philippe Lejeune puts it.37 Yet if online diary-keeping for Herrndorf was a daring endeavor (because it made him vulnerable), reading the autothanatographical diary is not made easy, either.

While in many ways, Arbeit und Struktur as a literary text plays with the

permeability of the boundaries between fact and fiction, diary and novel,38 the photographs included serve the purpose of corroborating the extratextual referentiality to a lived reality of illness and dying outside of the text, highlighting it to be a piece of life writing. The majority of the photos are selfies; the angle and quality of the images suggest that they have been taken with the built-in camera of Herrndorf’s beloved MacBook (see fig. 3.4). Most of these snapshots depict the diarist looking straight into the camera lens, complying with a classic feature of self-portraiture, as the author, a painter by training and admirer of the old Dutch masters, will have been aware.39 Through meeting the reader’s eye in this way, Herrndorf directly addresses readers/viewers as his opposites—making them aware of their own subject position in relation to his. Jules Sturm’s description of self-portraiture as “a form of representation that calls for recognition by the viewer, a form of address that calls on the other to recognize the portrayed, to hail the depicted subject into social existence,” seems a particularly apt description of the selfies’ effect.40

Herrndorf takes the photographs in his flat, outdoors, and in hospital rooms,

as can be gathered from the background of the pictures. In the no-frills shots, he displays restrained facial expressions, keeps posing to a minimum, and rarely directly comments on the pictures in the writing that runs around them. This choice of aesthetic marks them as matter-of-fact, documentary material. It does not exactly invite emotional reactions to these images yet does allow for them. He himself reacts strongly to a portrait shot of the Norwegian author Knut Hamsun Ways of Looking

3.5  Screenshot from

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Wolfgang Herrndorf, Arbeit und Struktur (http://​www​.wolfgang​ ‑herrndorf​.de), on p. 269 of the print edition (Berlin: Rowohlt, 2013).

as a fifteen-year-old boy, facing the camera with a look (“Blick”) in his eyes that Herrndorf describes as “trotzig[], hellwach[], angewidert[]” (sulky, wide awake, repulsed), and that exactly because of the complex emotions it hints toward touches him deeply.41

As they accumulate over time, the images begin to capture physical changes

in the author. These changes are often subtle but can sometimes be drastic (see fig. 3.5), as when Herrndorf—newly discharged from the hospital—holds the back of his head squarely into the camera in order to take a picture that shows off a fresh scar, complete with staples: a result of the latest operation.

It is significant to note that without taking the picture of the scar, Herrn-

dorf himself would not have been able to view the mark in the first place. The camera functions as a prosthesis and is a creative, handy means that enables him to circumvent the limitations of his point of view as patient, at least in this instance.42 Regarding a more fundamental problem to do with his vision that he notices intensifying postsurgery and describes right below the post of the picture, however, it cannot help: “In the wake of the operation my field of vision seems to have shrunk or changed yet again.”43

Similarly to Du stirbst nicht’s protagonist in the aforementioned mirror scene,

Herrndorf himself here is his own primary starer, curious to take in the rare and unusual sight of the back of his own head (made possible by the use of technology), rarer yet for the recent traces of invasive surgery it displays. The desire to see comes before the desire to show here, although the actions are interrelated. The decision to actually post the picture is motivated by what Herrndorf sees, in the sense that what the image reveals strikes him as worth sharing in this very form. An alternative option, indeed possibly the more obvious one for Herrndorf as a literary author, would have been to put what he sees into words. Pathographics

Deciding against that kind of remediation, Herrndorf counts on the power of the visual medium as particularly immediate and hard-hitting here. The intermedial passage comes across as more “authentic” (in the sense of appearing more closely tied to his immediate lived experience) than, for example, the scene in Du stirbst nicht of Helene taking in her mirror image. As required by the genre he engages with, the diarist truly embodies the role(s) of author, narrator, and protagonist of his text; they concur in a way that Kathrin Schmidt and her creation Helene Wesendahl do not—and do not have to.

Posting this particular photograph to the blog highlights the illness diarist

Herrndorf to be an exemplary staree. As readers, we follow his visual lead to take a closer look; bending his head toward the camera’s lens, he gives us permission, even invites us to do so. “Denn warum nicht hingucken?” (Because why not look on?) is the question Herrndorf himself provocatively poses in a different context, namely in October 2011, after watching a TV documentary about André Rieder, a bipolar man who ended his life with the help of the Swiss organization Exit.44 The film Tod nach Plan (death on schedule) omits showing the man’s actual death, with the camera remaining outside, recording the snow falling on the premises of Exit as Rieder dies indoors.45 This, of course, is exactly what Herrndorf criticizes—fully knowing that showing Rieder’s death on-screen would be so clearly a breaking of current social taboos that it would make showings of the film impossible. Lastly, the scar photograph’s interplay with Herrndorf’s more typical selfies underlines an important point there is to staring—namely, that we are never just one or the other, but that our roles as starers or starees can shift and change and fold into each other, and that indeed, especially when in severe illness or dying (and/or when in states of dissociation), there is such a thing as staring intently at the self.

With Herrndorf’s diary consisting largely of unadorned text in a basic visual

layout, each of the full-color selfies—especially as they appear to first-time blog readers scrolling downward—acts as a calculated disruption to the flow in reading. Conscious of the media at his disposal, the author employs photography46 in this way to remind his readership that this diary is—now was—lived reality for him. The images or, more precisely, the unexpected shifts from text to photography and back prompt readers to consider the ways in which they themselves are implicated in or touched by the illness diary. Inserting them, Herrndorf offers a face to his diaristic voice, honoring expectations of intimacy that readers bring to life writing and, above all, diary texts. Yet it depends on the individual reader if they can pause, linger, and endure the steady look directed at them by the dying author, or if they find themselves quickly scrolling past these images. Herrndorf, who made his diary available for anyone to read and himself to be looked at, is staring back. The incorporation of these challenging images into the diary ensures that the balance is right between inviting readers who come to Arbeit und Struktur to consume the illness story as they would fiction and visually confronting them with the fact that he is—true at least for the time of writing—one of Ways of Looking

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them, living and breathing just the same, even (or especially) as he prepares to die. Part of accepting that likeness with the author means that the reader must accept the more difficult truth of their own mortality. 50



As Susan Sontag highlights in On Photography: “All photographs are memento

mori. To take a photograph is to participate in another person’s (or thing’s) mortality, vulnerability, mutability. Precisely by slicing out this moment and freezing it, all photographs testify to time’s relentless melt.”47 What does it do, then, to know that the photographer of the images included in Arbeit und Struktur is the person posing for them? Herrndorf’s self-portraiture directly addresses his anticipated transformation from live subject to dead object (a frozen section of tissue, if you will). To carry forward Sontag’s striking medical imagery, one can regard the dying author as his own anatomist, scrutinizing and dissecting his “ending” ahead of time, as it evolves. Like the diary genre, the medium of photography takes issue with time, without being able to halt it. What it can do, however, is to attempt to give reassurance that “something [or somebody] exists, or did exist.”48 The evidence is collated and preserved in the blog and later book. If, in life, the diarist’s self-portraits emphasized his presence, in his death, they reinforce his absence. Either way, they continue to “pierce[]” old and new readers.49 As Roland Barthes writes from the perspective of the beholder of such images: “I observe with horror an anterior future of which death is the stake.”50

Factored In: The Reader of Personal Stories of Illness/Disability Matt Freedman’s 2014 publication Relatively Indolent but Relentless: A Cancer Treatment Journal is another example of a cancer diary, although with a narrower thematic focus than Herrndorf’s and covering a much shorter period of time (namely, sixty days). Focusing on the thirty-five-day period of radiation and chemotherapy he underwent in 2012 for adenoid cystic carcinoma (tumors in the head and neck area spreading from the salivary glands), the American cartoonist and artist filled an empty notebook given to him by students and colleagues at the University of Pennsylvania, using it to literally count down the days that lie between him and the end of the poisonous yet lifesaving treatment he subjects himself to. In the individual entries, he details the ups and downs of treatment and the way he copes (or does not) with its serious effects on his body and psyche. In attempting to communicate the increasing pain he is in, Freedman often turns to illustrating the metaphors he finds for it as well as to using the color red to accentuate the pain caused by radiation and yellow for pus. He describes the support received from loved ones, as well as quarrels between them; he notes successes and setbacks in his struggles to eat (much effort and pride go into convincing doctors not to put him on a feeding tube), and he contemplates the role of the notebook amid the routines of his daily life during treatment.

Accepting the parting gift, Freedman accepted the invitation (and implicit

obligation) to record his time away in Boston and create something while away

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from the art world. A specific expectation or hope placed in the book by its donors may have been that it would minimize any estrangement that the experience of cancer treatment can cause between them and Freedman as he leaves them behind spatially as well as mentally to “identify [himself] as [a] citizen] of that other place,” the “kingdom of the sick,” as Susan Sontag’s famous words have it.51

The artist sees the material limitations of the paper notebook as an artistic

challenge: the inability to delete anything and the limited capacity to edit and plan ahead (i.e., storyboard) impose restrictions on his daily entries. At more than one point in the journal, Freedman complains about the poor quality of a pen or alternatively delights in having a good one. The published book is a facsimile of the original notebook. It preserves the messy handwriting and sketchbook-style drawings (traces of the moment and of the individual behind the book/experience), with only few editorial changes made after the fact and strictly for the sake of readability, as the preface emphasizes in a gesture conscious of the diary genre’s particular investment in ideas of authenticity (no pagination). My focus is on parallels between this text and Schmidt’s and Herrndorf’s negotiations of illness/disability with regards to the exposed position of the autobiographical author of published illness writing—also negotiated here through staring.52

Like Helene in Du stirbst nicht, Freedman’s self-representations stare repeat-

edly and intensely at his own mirror image. Freedman grants the reader insight into his inner world as cancer patient (or that of the experiencing I) through a combination of handwriting and sketchy, of-the-moment drawings. In contrast to Herrndorf, he expects to survive and live to tell the tale. His diaristic voice or narrating I tends to remain humorous; the book’s visual language ranges from the cartoonlike to the realistic to the grotesque. There is productive tension, however, between the words and images the author creates, and this tension hints at a dimension to the experience—a certain level of pain and fear?—that remains unarticulated.

While the words accompanying a first, striking mirror scene visualized in the

diary on “Day 5,” “Oct 16,” for example, read matter-of-fact, even sarcastic—“I woke up with usual dryness and head banging. In the mirror I saw the first irrefutable signs of decay: the beginning of a red neck”—the sketch of himself to the right of these lines (see fig. 3.6), which represents the moment he makes this discovery in the mirror, belies this tone and reveals the shock and worry with which the experiencing I registers these changes (despite having expected them).53 As readers, we find ourselves placed in the perspectival position of the mirror, directly opposite Freedman’s self-representation, facing him. This allows us to regard Freedman’s examination of his own reflection in an unimpeded manner: we note the eyes wide open in horror, eyebrows raised, with his fingers gingerly touching the alarming red patch covering the length of his neck. Our eyes search for his, which are busy taking in the damage done. Whether the image is a photo-realistic depiction of what the texts describes as “the beginning of a red neck” is irrelevant; indeed, if only for material/technological limitations, it is likely that it Ways of Looking

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3.6  Matt Freedman, Relatively Indolent but Relentless: A Cancer Treatment Journal (New York: Seven Stories, 2014), n.p. (top half of page).

is not. What the drawing does accurately communicate is Freedman’s emotional reaction to the frightening sight the mirror exposes that morning. In this respect, it is furthermore striking that in Relatively Indolent, Freedman’s self-representations—or pictorial embodiments—overall change and transform noticeably from entry to entry, day to day, aiming to reflect the diarist’s fluctuating inner state more than attempting to create likenesses of his actual physical self.

As in Schmidt and Herrndorf, I would argue that in Freedman, again, we

cannot confine such stares and reflections to within the book’s covers. Consider the following example from “Day 12,” “Oct 25”: “This morning I noticed that besides getting red, the skin under my chin seemed to be getting loose, too.” The accompanying drawing, centered on the page, breaking the sentence in half (an indication that the drawing came first) and thus taking precedence over the words, shows the diarist in front of a mirror once more (see fig. 3.7). Yet this time, significantly, the drawing presents both a reflection and the back of Freedman’s diaristic self looking into the mirror. As Sturm notes, “Images do not commonly convey their relationality to their viewer; they do not address the viewer’s position vis-à-vis the image or depict her complicity in the production of meaning via images”—but the unconventional perspective of this image does.54 Clearly, the intention is to integrate the reader into the drawing and, what is more, to make the reader conscious of his or her privileged position as starer/reader when Pathographics

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3.7  Matt Freedman, Relatively Indolent but Relentless: A Cancer Treatment Journal (New York: Seven Stories, 2014), n.p. (bottom half of page).

sharing in this private moment (as well as the account the diary gives as a whole) offered by Freedman. Stylistically, this is done by assigning us a position behind the figure’s left shoulder. From there, we are invited to watch him scrutinize the toll the aggressive treatment is taking on his body. At the same time, identification with the figure is facilitated: the reader’s observer position is triangulated via the mirror image reflecting back onto the character (i.e., the intradiegetic Freedman).

Facing decay, Freedman’s primary worry for the survival of the self alternates

with more superficial concerns about his physical appearance in illness (i.e., its effect within the social realm). How others perceive him becomes increasingly relevant as the therapy begins leaving more and more visible traces on his body. This is reminiscent of Du stirbst nicht’s protagonist wondering whether others class her as a disabled person. Doodling in the notebook (see “Oct 25”), Freedman conceives a number of future selves, all disfigured to varying degrees. Through creating these self-caricatures, he gives himself and the reader a good opportunity to look and laugh yet simultaneously also to prepare for the role of the visibly changed cancer survivor he anticipates becoming. Like Schmidt’s Helene,55 Freedman’s diaristic self furthermore stares unapologetically at other patients he encounters in the environment of the clinic he now inhabits (e.g., “Oct 16”). This ocular behavior indicates a desire to learn more about others’ “cancer Ways of Looking

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3.8  Matt Freedman, Relatively Indolent but Relentless: A Cancer Treatment Journal (New York: Seven Stories, 2014), n.p. (bottom third of page).

journeys”—indicating his own curiosity to be a potential reason he published the record of his treatment experience (offering himself up as staree in return for the opportunity he has had of observing others). And although there is no indication Freedman ever reached the level of disgust and shame with which Helene reacts to her mirror image as well as other disabled people in Schmidt’s novel, it is only with time that he can see and then also draw himself as one of the many cancer patients filling the waiting rooms of the clinic and settle into that role (“Nov 9”).

The image with which Freedman finally concludes the treatment diary is a

frontal self-portrait depicting the artist in a classic pose—namely, with pen and paper in hand (see fig. 3.8). Despite taking up this classic pose, the image breaks with traditions of self-portraiture in a number of ways: first, Freedman takes care to highlight the remaining pain brought about by radiotherapy with the established use of red ink—a simple yet effective means to make visible his suffering and the locality of the worst of his pain. Second, because he is limited by the notebook’s physical page ending but likely also because he finds this apt, Freedman divides the portrait up into two halves, separating head and body. He can thus direct the reader’s gaze to take in the head first (drawn in slightly exaggerated size) and squarely meet the artist’s eyes as they stare out from this last page. In a manner comparable to Herrndorf‘s use of selfies, then, Freedman seeks out a direct staring encounter with his readership on this final page of his diary. Left with such a powerful closing image to behold, the readers of this cancer diary (as Pathographics

of the aforementioned examples of PathoGraphics) are ultimately thrown back on themselves and are asked to reflect on their reactions to these difficult reads, as well as to illness/disability more widely—themes they inevitably encounter in their own lives.

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Conclusion: Seeing Eye to Eye There is a need for visibility felt by ill/disabled people just like anyone else. Inclusion is a desired goal in life writing as well as more generally in art and culture. The increase in personal illness/disability narratives that I observe at least across the West therefore has little to do with exhibitionism on the side of the staree/writer or voyeurism on the side of the reader/starer—two catchwords so often and so carelessly dropped into academic and other conversations about illness/disability narratives. This type of vocabulary, I would argue, relates to the gaze rather than to the (more equalizing) stare, and it others people and/ or their work. Garland-Thomson’s model of staring helps us rethink the situation and move on and away from this kind of damaging discourse. Approaching works of PathoGraphics through the lens of staring therefore feels overdue. It diverts attention from the author’s or artist’s—dubious, as tends to be implied— motivation for going public with illness/disability and moves it onto the texts themselves, encouraging analysis of aspects such as their form and an appreciation for innovation in the works. Second, it helps to think through the place of the reader. Contemporary illness/disability narratives involve the reader; the manner in which they “stare back” forecloses voyeuristic bystanding.

Can we turn our collective staring at difference into a conscious act of behold-

ing personal illness/disability narratives—and with that the people who created them? I would like to suggest that this is our job as scholars of these narratives. This corresponds to what Brooks conceives to be the task of the literary scholar: “If texts represent an attempt—fragile, vulnerable—by someone else to communicate with us, we might conceive our responsibility to be one of respectful attention to the communication.”56 Beholding, to Garland-Thomson, is “good,” engaged staring—an ideal. Perhaps there is a utopian element to it. It is the same sight eliciting a different response and can lead to ethical action: a potentially transformative experience. It is recognizing commonalities over differences.57 The question for scholarship is not whether to take heed of these narratives but how—if indeed we should approach them any differently at all than we do any other works of art and culture.

Notes 1. I use PathoGraphics as a portmanteau term for illness narratives in literature and in comics.

2. Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (London: Verso, 1995), 12. Davis writes this with Erving Goffman’s work on stigma in mind.

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3. Ibid. 4. Rosemarie Garland-Thomson, Staring: How We Look (Oxford: Oxford University Press, 2009), 20. 5. Davis, Enforcing Normalcy, 12. 6. María Gallardo and Miguel Gallardo, María y yo (Bilbao: Astiberri, 2007). 7. Davis, Enforcing Normalcy, 12. 8. Elisabeth El Refaie, Autobiographical Comics: Life Writing in Pictures (Jackson: University Press of Mississippi, 2012), 72. 9. Davis, Enforcing Normalcy, 12. 10. Garland-Thomson, Staring, 9. 11. Or victim and perpetrator, or patient and agent, to put it in grammatical terms. 12. El Refaie, Autobiographical Comics, 79. 13. On top of and as entangled with the verbal, and body language. 14. I develop these points at more length in chapter 2 of my monograph The Wounded Self: Writing Illness in Twenty-First-Century German Literature (Rochester, N.Y.: Camden House, 2018), titled “Looking Beyond the Self—Reflecting the Other: Staring as a Narrative Device in Kathrin Schmidt’s Du stirbst nicht (2009),” from which parts of this section are adapted. 15. Schmidt, Wounded Self. 16. Garland-Thomson, Staring, 13. 17. Ibid., 185–96. 18. Ibid., 5. In the German-language media discourse on illness/disability narratives of roughly the past decade, authors’ motives for going public with illness/disability as well as their stories’ appeal to readers have repeatedly been framed as questionable in this way (Schmidt, Wounded Self, 1–40). 19. The latter risk being caught out in the way Gallardo catches out strangers’ visual/ emotional reactions to the sight of his daughter. 20. Kathrin Schmidt, Du stirbst nicht (Munich: btb, 2011), 13. 21. Ibid., 112. 22. “Furchtbares Gefühl, dämlich (und vor allem offen) lächelnd anderen ausgeliefert zu sein. Jetzt erst glaubt sie zu bemerken, dass sie tatsächlich über Gebühr lächelt: Die kleinste Freude zieht sofort den Mund breit, sie merkt es inzwischen daran, dass Speichel läuft. Und die Freude hört damit so leicht nicht auf. Sie ist ein Breitmaulfrosch. Sucht das Gesicht im Spiegel der Waschnische auf. Nein, Glupschaugen sind ihr noch nicht gewachsen. Die Finger sind nicht trommelschlegelförmig verändert, ebenso wenig die Zehen. Ein bisschen grün sieht sie aber aus. Siehst du, Helene: grün vor Wut. Sie lächelt, und da überkommt es sie auch schon wieder, das rauschbrausende Wüten. Hilflosigkeit . . .” (ibid., 81).

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23. Note in this context the popularity across media of employing mirrors and mirror scenes in autobiographical narratives (especially when about illness/disability). Thomas Metscher identifies the metaphor of the mirror as the “Kernmetapher” (core or central metaphor) of modernity, epitome of both narrations of human subject formation and the subject in crisis in modern literature and art. See Hans Heinz Holz and Thomas Metscher, “Widerspiegelung/‌Spiegel/‌Abbild,” in Ästhetische Grundbegriffe, ed. Karlheinz Barck (Stuttgart: Metzler, 2005), 6:642. Just as in literary writing, mirror scenes abound in graphic medicine: El Refaie (Autobiographical Comics, 66–68) highlights Al Davison’s The Spiral Cage (1990), Marisa Acocella Marchetto’s Cancer Vixen (2006), and David Small’s Stitches (2009) as featuring mirror scenes. 24. For a more extensive discussion of this, see my book chapter “Looking Beyond the Self,” in Wounded Self. 25. Schmidt, Du stirbst nicht, 320. “Eine schaut sie mitleidig an, die andere ist bemüht, wegzusehen. Schade. Dass sie noch immer ein seltsamer Anblick für andere ist, vergisst Helene wieder und wieder. Dabei trägt sie die Schädelnarbe unter der Mütze verborgen, es kann also so schlimm gar nicht sein, aber wahrscheinlich sind die beiden alten Dünnen noch leichtfüßig zugange, und es fehlt ihnen die Vorstellung, eben das nicht zu sein. Jetzt bemerkt sie aber doch den Speichel, der sich vor ihrem Mund abgesetzt hat, und kann die Alten besser verstehen.” 26. At once referential and fictional, like a mirror’s reflection. 27. Schmidt, Du stirbst nicht, 319, 330. 28. G. Thomas Couser, “Disability, Life Narrative, and Representation,” in The Disability Studies Reader, ed. Lennard J. Davis, 4th ed. (New York: Routledge, 2013), 458. 29. Public attention to the text culminated in the wake of it winning the Deutscher Buchpreis 2009. Du stirbst nicht is Schmidt’s most widely known work to date. 30. Frederik Byrn Køhlert’s recent writing entitled “Staring at Comics,” which draws on Garland-Thomson’s ideas in an analysis of Al Davison’s The Spiral Cage, too, sees this potential. In it, he argues that the comic form in particular “allows for the staging of a dynamic exchange of stares with the implied observer that has the potential to help the author elude the objectifying gaze commonly associated with looking at disability”; for Køhlert, this is to do, above all, with the fact that comics are “hand-drawn and multimodal.” See Frederik Byrn Køhlert, “Staring at Comics,” in Serial Selves: Identity and Representation

in Autobiographical Comics (New Brunswick: Rutgers University Press, 2019), 124, 156. 31. Peter Brooks, introduction to The Humanities and Public Life, ed. Peter Brooks and Hilary Jewett (New York: Fordham University Press, 2014), 7. 32. Wolfgang Herrndorf, Arbeit und Struktur (Berlin: Rowohlt, 2013), originally published online and retrievable at http://‌www‌.wolf gang‌‑herrndorf‌.de, and Matt Freedman, Relatively Indolent but Relentless: A Cancer Treatment Journal (New York: Seven Stories, 2014). I must thank Susan Squier for bringing Freedman’s text to my attention. 33. The fact that Herrndorf kept the diary digitally meant he was able to make new entries available in relatively quick succession, and it was easy for site visitors turned readers to recommend the blog to others. Apart from the fact that it was published on the internet, the live blog of the years 2010 to 2013 was a relatively traditional text. Any interaction with blog followers was avoided as Herrndorf disabled the blog’s commenting functions from the start. The online version of Arbeit und Struktur might therefore best be understood as a work-in-progress, a manuscript (although made visible to a digital public so soon). 34. See http://‌www‌.wolfgang‌‑herrndorf‌.de. 35. Most of these were reprinted in the later book. For this chapter, screenshots of photographs are taken from the internet and quotations of Herrndorf’s writing from the book version. 36. El Refaie, Autobiographical Comics, 91. 37. Philippe Lejeune, “The Diary as ‘Antifiction,’” in On Diary, ed. Jeremy D. Popkin and Julie Rak, trans. Katherine Durnin (Honolulu: Biographical Research Center, 2009), 208. A diarist himself, Lejeune makes this statement from the inside perspective. 38. For more, see chapter 4 of my monograph The Wounded Self, titled “Confronting Cancer Publicly: Diary Writing in Extremis by Christoph Schlingensief and Wolfgang Herrndorf,” from which parts of this section are adapted. 39. Corina Caduff, “Selbstporträt, Autobiografie, Autorschaft,” in Autorschaft in den Künsten: Konzepte—Praktiken—Medien, ed. Corina Caduff and Tan Wälchli, Zürcher Jahrbuch

der Künste 4 (Zurich: Zürcher Hochschule der Künste, 2008), 58. 40. Jules Sturm, “Portraiture and Self-Loss,” in Bodies We Fail: Productive Embodiments of Imperfection (Bielefeld: transcript, 2014), 87. 41. Herrndorf, Arbeit und Struktur, 109. 42. Note that Herrndorf overall poses as trickster in this passage: he lies to the medical staff discharging him from the hospital about being picked up in order to cycle home—thus affording himself a moment of independence and joy. 43. Herrndorf, Arbeit und Struktur, 269. “Als Folge der OP scheint sich mein Sichtfeld noch einmal verkleinert oder verändert zu haben.” 44. Ibid., 254. Exit offers physician-assisted suicide to members. 45. Hanspeter Bäni, dir., Tod nach Plan: André, psychisch krank und lebensmüde, DVD (Zurich: Praesens Film AG, 2011), mins. 46:15–47:02. 46. And, though much less often, videography. 47. Susan Sontag, On Photography (New York: Anchor Books, 1990), 15. 48. Ibid., 5. 49. Roland Barthes, Camera Lucida: Reflections on Photography, trans. Richard Howard (New York: Hill and Wang, 1981), 26. 50. Ibid., 96. 51. Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (London: Penguin Books, 2002), 3. 52. Gallardo’s María y yo is different because of the primary focus on the daughter—that is, on a close other rather than the artist himself. 53. As handwriting the words themselves are “visually inflected,” they can therefore be seen as part of the image rather than in clear opposition to it. See Charles Hatfield, “An Art of Tensions,” in A Comics Studies Reader, ed. Jeet Heer and Kent Worcester (Jackson: University Press of Mississippi, 2009), 133. 54. Jules Sturm, “Vulnerability,” in Bodies We Fail, 68. 55. Schmidt, Du stirbst nicht, 117. 56. Brooks, introduction to The Humanities and Public Life, 7. 57. Without losing sight of contextual (linguistic, geographical, historical) specificities.

References Bäni, Hanspeter, dir. Tod nach Plan: André, psychisch krank und lebensmüde. DVD. Zurich: Praesens Film AG, 2011. Barthes, Roland. Camera Lucida: Reflections on Photography. Translated by Richard Howard. New York: Hill and Wang, 1981.

Brooks, Peter. Introduction to The Humanities and Public Life, edited by Peter Brooks and Hilary Jewett, 1–14. New York: Fordham University Press, 2014. Caduff, Corina. “Selbstporträt, Autobiografie, Autorschaft.” In Autorschaft in den

Ways of Looking

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58

Künsten: Konzepte—Praktiken—Medien, edited by Corina Caduff and Tan Wälchli, 54–67. Zürcher Jahrbuch der Künste 4. Zurich: Zürcher Hochschule der Künste, 2008. Couser, G. Thomas. “Disability, Life Narrative, and Representation.” In The Disability Studies Reader, edited by Lennard J. Davis, 456–59. 4th ed. New York: Routledge, 2013. Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. London: Verso, 1995. El Refaie, Elisabeth. Autobiographical Comics: Life Writing in Pictures. Jackson: University Press of Mississippi, 2012. Freedman, Matt. Relatively Indolent but Relentless: A Cancer Treatment Journal. New York: Seven Stories, 2014. Gallardo, María, and Miguel Gallardo. María y yo. Bilbao: Astiberri, 2007. Garland-Thomson, Rosemarie. Staring: How We Look. Oxford: Oxford University Press, 2009. Hatfield, Charles. “An Art of Tensions.” In A Comics Studies Reader, edited by Jeet Heer and Kent Worcester, 132–48. Jackson: University Press of Mississippi, 2009. Herrndorf, Wolfgang. Arbeit und Struktur. Berlin: Rowohlt, 2013. Originally published online and retrievable at http://‌www. wolfgang‌‑herrndorf‌.de.

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Holz, Hans Heinz, and Thomas Metscher. “Widerspiegelung/Spiegel/Abbild.” In Ästhetische Grundbegriffe, edited by Karlheinz Barck, 6:617–69. Stuttgart: Metzler, 2005. Køhlert, Frederik Byrn. “Staring at Comics.” In Serial Selves: Identity and Representation in Autobiographical Comics, 123–56. New Brunswick: Rutgers University Press, 2019. Lejeune, Philippe. “The Diary as ‘Antifiction.’” In On Diary, edited by Jeremy D. Popkin and Julie Rak, translated by Katherine Durnin, 201–10. Honolulu: Biographical Research Center, 2009. Schmidt, Kathrin. Du stirbst nicht. Munich: btb, 2011. Schmidt, Nina. The Wounded Self: Writing Illness in Twenty-First-Century German Literature. Rochester, N.Y.: Camden House, 2018. Sontag, Susan. Illness as Metaphor and AIDS and Its Metaphors. London: Penguin Books, 2002. ———. On Photography. New York: Anchor Books, 1990. Sturm, Jules. “Portraiture and Self-Loss.” In Bodies We Fail: Productive Embodiments of Imperfection, 85–116. Bielefeld: transcript, 2014. ———. “Vulnerability.” In Bodies We Fail: Productive Embodiments of Imperfection, 53–83. Bielefeld: transcript, 2014.

4

The Comics Pain Scale and Comics About Pain Ariela Freedman

Pain—has an Element of Blank— —Emily Dickinson

To live in a body is to have pain. But to say we have pain is to say almost nothing at all. We do not have pain like we have a house or a dog or an arm; our pain is elusive, both our own and alien to our bodies. It travels, comes and goes, and frustrates our attempts to describe it. I can be badly hurt and feel no pain; I can be in terrible pain and have no visible cause. I can say I share your pain, but I cannot even know my own. When we talk about pain, we reach for metaphors, describing pains that crush, bite, pinch, stab; variations on temperature; burning pains; icy pains; or, simply, statements of degree. In her essay “On Being Ill,” Virginia Woolf wrote: “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. . . . The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”1 And yet pain language is anything but dry; it is both rich and insufficient. We have many ways to describe our pain, but characteristic to the experience of describing pain is a sense of frustration and inaccuracy.

In recent years, scholarship has increasingly turned to what Joanna Bourke

calls “the story of pain,” addressing questions of the representation, interpretation, and meaning of pain in different times and places.2 In David Morris’s words, “We cannot simply suffer pain but almost always are compelled to make sense of it.”3 Over the past three decades, critics and historians have worked to elaborate what Morris calls the “social and personal meanings that we make out of

pain,” furthering our understanding of the meaning of pain language and the history of pain.4 As the Birkbeck Pain Project argued, pain is at once subjective and social, historical and transcultural.5 Funded by the Wellcome Trust, the Birk60

beck Pain Project draws on a diverse and inclusive range of narratives about pain inside and outside the medical context, including underrepresented voices found in published and unpublished diaries, cartoons, and art. In their model, exploring pain involves a broad philosophical investigation or philosophical grammar that extends beyond any single disciplinary or institutional monopoly on its meaning. This grammar is not of essences but of uses and conventions, which despite the feelings of privacy and incommunicability that often accompany the experience of pain are necessarily social. Joanna Bourke calls pain “an event that is rendered public through language,” one “swollen with metaphor, simile, metonym, and analogy.”6 Refining our understanding of the shifts and nuances in our use of language around pain means listening to the narrative of the sufferer while also being attentive to changing habits, deployments, and transactions in the language of pain. The metaphors we use for pain have a social and cultural context, and the social nature of pain creates communities and predicates relationships.

Comics are well suited to the gestural qualities of pain language. Douglas Wolk

writes that cartooning’s “chief tools are distortion and symbolic abstraction”— the very language we turn to when we try to describe our pain.7 The grimace, the tear, the clutched side or arm, all signal pain in a quick, streamlined, caricatural fashion. At times, we become cartoons when we are in pain: we are grotesque, we imagine our body swelled to Brobdingnagian proportions or a comic anvil or hammer being swung at our head. For this reason, comics are often historically associated with the representation of “cartoonlike” pain without true harm or consequence. However, the comics medium also has a capacity to take on the serious and urgent struggle to represent pain as a fraught and challenging encounter with the limits of image and language, as artists such as Paula Knight, John Porcellino, Brian Fies, Al Davison, and many others have demonstrated. Through a combination of image and words, comics can both show and tell pain, bridging the confines of both and providing a liminal space able to mobilize a broad range of tools while—and it is this that is particularly important—metatextually gesturing toward their inadequacy. Indeed, comics present a historically dense and sophisticated vocabulary for pain language, synesthetic and defined as much through its absences and exclusions as through what it represents. The medium contains discursive possibilities that respond to what Elaine Scarry calls the “unmaking” power of pain and its overflow of our usual modalities of representation.8

In this essay, I begin with a brief history of the quantification of pain and the

origins of the Wong-Baker FACES Pain Rating Scale, a tool used in clinics and hospitals that asks patients to self-report their pain by pointing to one of six cartoon faces. The FACES Pain Rating Scale has proved a tempting instrument

Pathographics

to lampoon, so I then turn to works of graphic medicine that satirize the pain scale and criticize its usefulness. These parodies move us from the instrumental measurement of pain in the hospital setting to broader questions around pain, imagination, and representation. Ending with two longer graphic narratives of pain, Knight’s “Chronic Pain Drawing Diary” and Porcellino’s The Hospital Suite, I argue that comics have gone well beyond the quantitative approach to depict the full experience of pain in moving and profound ways. These graphic narratives provide aesthetic and ethical lessons that can be brought back to the hospital setting to facilitate and refine the challenging project of understanding and communicating pain.

The Pain Scale The problem of representing and quantifying pain finds its most urgent application in a medical framework. The measurement of pain in the hospital and clinic was developed alongside analgesics; the purpose of measuring pain in a medical context is to treat it. Initially, pain scales tried to establish objective measures based on external stimulus and the observation of laboratory experiments—this much pain ought to hurt this much and should require this much morphine. Later on, pain questionnaires elaborated and developed an adjectival language of pain that was supposed to translate what often feels ineffable into something measurable, definable, and contained.9 The current measure of choice is the pain scale. One pain scale is numerical, a simple 0 or 1–10, sometimes with language to articulate the severity of the numbers on the scale. Versions of this scale use color to indicate intensity, moving from a painless green to an intensified red, and they incorporate varied amounts of text, from no text at all, to minimal commentary, to extensive verbal elaboration. The Stanford PainScale articulates “1” as “Very Mild” but when it moves to “10” describes pain as “Unimaginable, Unspeakable,” as if to indicate that the language at the very peak of the scale is, indeed, beyond language.10 Indeed, in the Stanford scale, the patient at 10 is described as experiencing “pain so intense you will go unconscious shortly,” and thus outside the purview of the pain scale itself, unable to point or to name. The scale contains the limits of its own redundancy.

A more recent scale, developed in 1981, uses cartoon faces (see fig. 4.1). First

built by a pediatric nurse, Donna Wong, and a pediatric specialist, Connie Baker, who worked together in the burn ward of the Hillcrest Medical Center in Tulsa, Oklahoma, the cartoon pain scale aims to be an assessment tool that can be used by children who have difficulty with a numerical scale, or with unfamiliar language.11 Wong and Baker noticed that children were sensitive to facial expression as a measure of severity and intensity. “Smiley face” stickers were popular in the eighties and often used to reinforce cooperation or to reward good behavior in the burn ward. Based on the simplified model of the smiley face sticker, Wong and Baker developed a series of faces in conjunction with drawings made The Comics Pain Scale

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62

4.1  Wong-Baker FACES Pain Rating Scale (1983). © 1983 Wong-Baker FACES Foundation. http://‌www.WongBakerFACES‌.org.

by the children in the unit. The expressions on these faces corresponded to levels of intensity.

The researchers took the common elements of the faces the children drew

to create a composite portrait, emphasizing the eyes and eyebrows. The faces were genderless, in order to increase possibilities of identification. Through what Scott McCloud famously calls simplification and amplification, the cartoon faces became loci for generalized reader identification and were drawn from left to right in order to be read more clearly.12

In some ways, the faces diverged from representational literalism. Most chil-

dren drew tears for 10, the most severe measure, though many children did not cry during very painful procedures. When Baker asked about the tears, they insisted on keeping them, saying “you could feel this bad inside.”13 Tears effectively signaled intense pain, even if they were not literally accurate. Their expressive truth trumped their physical presence. This divergence is interesting because it implies that in its very design, the pain scale does not aim for semantic accuracy but for affective connection. In fact, the most important element of the scale is gradation; instead of using or picturing the descriptive language of earlier pain questionnaires (does it burn? pinch? crush?), the only thing the scale measures is subjective intensity. The pain scale is also normate, reliant on the patient’s ability to interpret facial expressions and point to them.

The Wong-Baker pain scale, used primarily with children but also with the

elderly, with the cognitively disabled, and to navigate language barriers with patients, is still frequently employed in clinics and hospitals. The FACES Pain Rating Scale was revised in 2001, using egg-shaped faces rather than the original cartoony circles, and substituting the smile and tears on the original scale for more emphasis on distress lines around the forehead and eyebrows and grimaces and cries at the mouth. Many clinics still use the original, cartoony, and rather more charming, drawings.

Nonetheless, the very idea of a pain scale is frustrating and has proved a

tempting target for artists concerned with the representation and communication Pathographics

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4.2  Allie Brosh, “Boyfriend Doesn’t Have Ebola. Probably,” Hyperbole and a Half, 2010. © 2009–13 Allie Brosh. http://‌hyperboleandahalf .blogspot‌.com.

of pain. Cartoonist Allie Brosh, author of Hyperbole and a Half, the book that followed her popular blog and chronicled her long struggle with depression, published her own pain scale on February 10, 2010, following an emergency room visit with her boyfriend, who was vomiting copiously. Her work appropriates, critiques, and satirizes the pain scale, making its smiley face genealogy seem downright insulting in the context of extreme suffering (see fig. 4.2). Her scale rewrites the categories of the normative scale in terms of humorous and mild discomfort. 0: Haha! I’m not wearing any pants! 2: Awesome! Someone just offered me a free hot dog! 4: Huh. I never knew that about giraffes. 6: I’m sorry about your cat, but can we talk about something else now? I’m bored. 8: The ice cream I bought barely has any cookie dough chunks in it. This is not what I expected, and I am disappointed. 10: You hurt my feelings, and now I’m crying!

Brosh proposes a much more dramatic set of figures, culminating in: 7: I see Jesus coming for me, and I’m scared. 8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help. 9: I am almost definitely dying. 10: I am actively being mauled by a bear. 11: Blood is going to explode out of my face at any moment. Too Serious for Numbers: You probably have Ebola. It appears that you may also be suffering from stigmata and/or pinkeye.

Brosh’s pain scale provoked a slew of responses. Many readers commiserated about the frustrations and the inadequacy of the pain scale, insulted by the very idea of measuring their pain. They reported adversarial confrontations with their The Comics Pain Scale

doctors and attempts to modify a generic pain scale with their own language and experiences. “Everytime [sic] they ask me to rate my pain I want to scream, ‘It’s a 12!!!’” one respondent wrote, while other readers made claims for their own cred64

ibility, “Every time I’m asked to rate my pain, I start off saying, ‘Okay, I’ve ruptured a disk. I’ve had pain so bad it made me pass out. I *know* what a 10/10 is.’”14

Why challenge a claim about another’s pain or pain tolerance, and why do

these modified pain scales provoke such passionate engagement? The distance between the universal scale and the particular, propertized experience of pain— “my pain”—is sometimes in itself enough to disorient the patient, who is asked to communicate a private experience in generic terms that feel not just unsatisfying but, more importantly, like a compromise of integrity. Ludwig Wittgenstein writes that the phrase “Only I know I am in pain” is false in one sense and nonsense in another: false because it is often clear to others when one is in pain and nonsense because the phrase “I know” does not apply to pain in a clear and sensible fashion.15 To the cry “‘But surely another person can’t have this pain!’ Wittgenstein can only respond drily,—‘The answer to this is that one does not define a criterion of identity by emphatic stressing of the word ‘this.’”16 But as these comments indicate, and as the self-reporting pain scale acknowledges, part of the experience of having pain is feeling that one has a privileged and private access to or knowledge of one’s own pain that complicates the imperative to communicate it. Notably, many of the most enthusiastic commenters on Brosh’s scale are health professionals, doctors, nurses, physiotherapists, and paramedics. As one paramedic wrote, “WongBaker is no more. Brosh faces are in.” If medical professionals openly celebrate a comic that so acutely parodies the deficiencies of the pain scale, it is because they recognize the inadequacy of the tools that bind them. This recognition suggests the need for more flexible tools that facilitate rather than regulate the communication of pain, and that can be more closely tailored to individual experience and the complicated encounter between patient and health care worker.

Pain language is transactional, not nominative—we use it in particular contexts,

in order to be helped, in order to be heard, and to explain ourselves to ourselves as much as to another. Veena Das explains that pain “is not that inexpressible something that destroys communication or marks an exile from one’s existence in language. Instead, it makes a claim, asking for acknowledgment, which may be given or denied. In either case, it is not a referential statement that is simply pointing to an inner object.”17 The representation of pain is not singular but multiple, both in aims and strategies: it can be empathic, expressive, cathartic, aesthetic, explanatory, transactional. Instead of asking about the meaning of pain, we might ask about its uses: not what but who, how, why, or to whom?

Beyond the Pain Scale in Words and Images Eula Biss’s frequently cited essay “The Pain Scale” takes the measurement of pain as its subject in a stunning meditation on chronic pain, the elusiveness of

Pathographics

measurement, the inadequacy of the pain scale, and our need to move beyond it. For Biss, who charts a long battle with chronic pain, the pain scale is a challenge and a quandary. For instance, Biss describes her confusion when faced with the far end of the pain scale, defined as “the worst pain imaginable.”18 The invitation to imagine “the worst” leads to radical and extreme flights of fancy. “Left alone in the exam room I stare at the pain scale, a simple number line complicated by only two phrases. Under zero: ‘no pain.’ Under ten: ‘the worst pain imaginable.’ The worst pain imaginable. . . . Stabbed in the eye with a spoon? Whipped with nettles? Buried under an avalanche of sharp rocks? Impaled with hundreds of nails? Dragged over gravel behind a fast truck? Skinned alive?”19

What is the worst pain imaginable, and how is the specification “the worst”

useful when measuring one’s own pain? The webcomic xkcd satirizes the same deficiency in the six-panel comic “Pain Rating.”20 A patient goes into the clinic saying, “My arm really hurts,” and the doctor responds with the familiar formula, “How would you rate the pain, from one to ten where ten is the worst pain you can imagine?” “The worst pain I can imagine?” the patient echoes, and two silent panels focus on the patient, suspended time and negative space that allow the reader, like the patient, to dwell on a sadistic range of examples. “One,” the patient reports in the punch line panel, and the doctor responds, “What the hell is wrong with his imagination?” As the comic demonstrates, you don’t have to show pain to suggest it—the discretion of the comic means the reader participates in an act of empathic imagination, figuring their own pain scale into the blank space. And as the punch line indicates, the phrase “the worst pain imaginable” invites the extreme range of imagination rather than a neutral scale of measurement.

Like the stick figure in xkcd’s “Pain Rating,” Biss underreports her pain in

response to her imaginative fecundity. “I tried to determine what percentage of the pain of burning alive I was feeling,” she writes, and then gives her pain a three, which she calculates as 30 percent of the worst pain she can imagine.21 Unsurprisingly, when reported as a three, her pain is undertreated. Her father, who is a doctor, later tells her: “Three is nothing. . . . Three is go home and take two aspirin.”22 Biss has misunderstood the language game of reporting pain, where to list one’s pain as under a five is to risk not being taken seriously, while to identify as a ten is to lose credibility as a witness to your own pain. Biss writes, “Overwhelmingly, patients tend to rate their pain as a five, unless they are in excruciating pain. At best, this renders the scale far less sensitive to gradations of pain. At worst, it renders the scale useless.”23 The tyranny of the mean limits the useable range of the pain scale, from about a four to an eight—serious enough to be noticed while avoiding the hyperbolic edges of the scale. The savvy patient will deploy the pain scale to get the treatment they need, so the presumed neutrality of the scale flips into self-management strategies that pit the shrewdness of the patient against the skepticism of the doctor. The pain scale must be gamed to make it work. The Comics Pain Scale

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It is no less complicated to rate one’s pain against an internal scale dependent

on the vagaries of memory. “I have always found it comic when a doctor asks me to rate my pain on a scale from 1 to 10,” Siri Hustvedt writes.24 “Do I remember 66

the worst pain?” she continues, “I can’t retrieve it as pain, only as an articulated memory or an empathic relationship to my past self: childbirth hurt, migraines hurt, the pain in my cracked elbow hurt. Which one was a 6, a 7? Is my 4 your 5? Is Charlie’s 9 Daya’s 2? Does a 10 actually exist, or is it a sort of ideal representation of the unbearable?”25 Hustvedt points to an additional problem: not only measuring one’s pain against another’s but measuring one’s pain against one’s own prior experience, when memory is notoriously fallible. Her description of an “empathic relationship to my past self” suggests that when we remember and measure our own pain, we have no more privileged access to that memory than we do to the imagined pain of a stranger.26 Like Wittgenstein’s “beetle in the box,” we have no way of ascertaining whether our pain is the same as that of another, or whether it is self-identical, the same as pain we have had before, or worse, or better.27 “My nerves have short memories,” Biss writes. “My nerves cannot, or will not, imagine past pain—this, I think, is for the best.”28 In the end, an internal scale is no more stable or absolute than an external one. We are always translating when we describe pain, even when we explain it to ourselves.

Affect, Suffering, and the Politics of Pain An additional difficulty in measuring pain is the question of what, exactly, is being measured. Is measuring pain different from measuring suffering? Can we distinguish between physical and emotional pain? Biss turns to the porousness of the pain scale, writing: “Several studies have suggested that children using the Wong-Baker scale tend to conflate emotional pain and physical pain. A child who is not in physical pain but is very frightened of surgery, for example, might choose the crying face. One researcher observed that ‘hurting’ and ‘feeling’ seemed to be synonymous to some children. I myself am puzzled by the distinction. Both words are used to describe emotions as well as physical sensations, and pain is defined as a ‘sensory and emotional experience.’”29 However, that very ambiguity is built into the self-reporting of the pain scale, which recognizes that pain is a subjective experience. For all the frustration of trying to describe one’s pain, arguing that language is inaccurate misses the point of the pain scale, which is not to name pain for what it is—as if that were an accessible and objective goal—but to facilitate treatment, assess urgency, and establish a baseline (so, for instance, if the patient reports an eight and after analgesics reports a four, then the medication is helping). Further, one of the goals of the pain scale might be not to facilitate expression but to limit expression. Biss’s father explains that the pain scale is also designed to insulate doctors from exactly the language that Brosh and Biss explore. “One of the functions of the pain scale,” he tells her, “is to protect doctors—to spare them some emotional pain. Hearing someone

Pathographics

describe their pain as a ten is much easier than hearing them describe it as a hot poker driven through their eyeball into their brain.”30 The patient and doctor are both protected by the mechanism of self-reporting, since the patient is given the ostensive credit of pointing to their own pain and the doctor is spared the lurid details. Adding self-reporting to the measurement of pain is, undoubtedly, an advance on earlier ideas of how much pain one should feel, or who feels pain; grotesque early examples include the treatment of babies without anesthesia or the belief that African Americans felt less pain than Caucasians.31

Our assessment of pain has always been bound up with our understanding

of the human. The Wong-Baker pain scale privileges the face as the locus of pain expression, although other behavioral scales chart a much broader range of bodily expression, from posture to tremors to spasm. In other words, our pain scales are cultural, not only individual, in ways that prejudice our understanding and recognition of pain. In Western art and pathographics, suffering bears a particular face: that of the Trojan priest Laocoön, “the prototypical icon of human agony.”32 From the sixteenth through the nineteenth century, the face of Laocoön, from the sculpture excavated in 1506 near Santa Maggiore church in Rome, became the template for both the pathognomonic sign of pain and its proper aesthetic representation. The Scottish surgeon and artist Charles Bell drew Laocoön’s face without attribution in his The Anatomy and Philosophy of Expression as Connected with the Fine Arts (1824).33 For his audience, it was an instantly recognizable exemplum. Bell prefaces his discussion of pain with a defense of pain, for which Laocoön acts as illustration. “Pain is affirmed to be unqualified evil; yet pain is necessary to our existence; at birth, it rouses the dormant faculties, and gives us consciousness. To imagine the absence of pain, is not only to imagine a new state of being, but a change in the earth, and all upon it.”34 Bell soon turns to the pathognomonic signifiers of Laocoön’s face: “The lips are drawn laterally, the nostrils dilated; the eyes are largely uncovered and the eyebrows raised.”35 But primarily, he uses the face as an illustration of humanity, not pathology. When Bell looks at Laocoön, he sees pain as an integral and meaningful feature of the human condition. But Laocoön’s pain also counts because he counts: his is a racialized, gendered, and classed exemplum.

The history of the measurement of pain is inseparable from its political and

cultural context, and the treatment of pain is political, social, racial, and gendered in lasting ways. Women’s pain is treated less urgently than that of men, and black children in emergency rooms are less frequently offered medication than white children.36 In that context, insisting on the validity and reality of one’s own pain is a political act, especially when that pain cannot be visually validated or demonstrated. “No face, no pain?”37 Biss speculates, considering an image as famous to a twenty-first-century audience as Laocoön was to the nineteenth, the Abu Ghraib photograph of the nude prisoner whose face is covered with a black hood. To cover the face is to deny the humanity of the sufferer. In Sanford Biggers’s 2015 rendition of Laocoön, an oversized inflatable vinyl sculpture of Fat Albert lies facedown The Comics Pain Scale

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on the gallery floor, his countenance half obscured. The prone sculpture, inhaling and exhaling through an air pump, evokes the protest cry “I can’t breathe,” of the Black Lives Matter movement, even as the depiction of Fat Albert’s rolling 68

eyes and gargantuan form riffs on the dehumanizing representational patterns of minstrelsy. For Biggers, this cartoonish Laocoön is the face of contemporary suffering. When we consider the representation of pain, we need to account not only for the measurement of individual suffering—those genderless, deracinated faces of the Wong-Baker pain scale—but also for the ways that measurements and assessments of pain work in gendered and racialized instances and contexts. We need to ask not only how to represent and quantify pain but whose pain is treated with urgency, whose is met with skepticism, whose is denied, whose is believed. All people suffer, but not all suffering is met with equal urgency and credence. The project of quantifying pain must be checked by an admission that our history of recognizing, quantifying, and, indeed, inflicting pain, is one that still haunts us.

Chronic Pain in Comics In the final part of this essay, I turn to two representations of pain in comics, Paula Knight’s drawing of chronic pain in the sketchbook comic “What If?” and John Porcellino’s rendition of illness in the graphic memoir The Hospital Suite. Both Knight and Porcellino chart pain as alchemical renewal, an experience that pushes the artist to new strategies and techniques in response to both physical and existential crisis.

Knight published her “non-dominant hand chronic pain drawing diary/sketch-

book,” titled “What If?,” on her website, where she notes it is the first comic she has completed since publishing her graphic memoir The Facts of Life in 2017. In the time since publication, she writes, her health has significantly deteriorated. She draws the comic in a sketchbook with her left hand, an adaptation that responds to pain in her dominant right hand. As she explains, “I’m trying to find new ways of working so I can somehow continue writing, drawing and creating comics. My hope is that if I use my left hand to draw, it will at least spread the load, and I might eventually become sufficiently ambidextrous to switch sides when one gets too painful. This might help to slow down the progression of any arthritis and ultimately extend my potential working life as an artist. Artwork is also made difficult by being unable to sit at a drawing board for long, if at all, hence using a sketchbook.”38

In Knight’s sketchbook drawings, the tremulous hand and the shivering line

represent and express a hand unused to taking the lead. What we could call Knight’s dominant style, after the term dominant hand—the style refined and expressed in her published illustrations and graphic memoir—is smooth, sophisticated, ligne claire, and polished. The “Chronic Pain Drawing Diary,” by contrast, feels immediate and confessional, and self-reflexively uses both the materials and the experience described to create an ephemeral representation of pain as dissolution.

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4.3  Paula Knight, “Chronic Illness and Creativity Comic.” Paula Knight, illustrator-writer, 2017. © Paula Knight.



Knight creates her comic by successively ripping away the pages in a notebook,

photographing each stage as a panel in a comic that becomes a palimpsest and a record of dissolution. In the first page of the series, Knight shows a woman from the back, neck to hips, her body divided by the spine of the notebook, her arms cut off by the edge of the page (see fig. 4.3). The image is symmetrical, simple, and emphatic, cut off at the neck and arms by the borders of the notebook pages, divided in two by the spine of the notebook. A red pencil has scribbled pain lines on the neck, shoulders, back, and elbows, in varying shapes and intensities—dartlike pain along the lower spine, emanata sparked by the arms, scrawls near the shoulders and darker forceful lines by the neck. Two blue bands on the upper arms signal compression. The diagram resembles the outlined body charts doctors use to track patient pain. It is nearly generic but marked as particular by the curly hair that identifies the artist, the pain of a particular body rather than anybody.

In addition to the materiality of the notebook, the red pencil forms part of the

image, stuck between the coils to mark the spine of the figure. “Creativity is my backbone—it props me up in so many ways,” Knight writes.39 The pencil as spine The Comics Pain Scale

is both object and metaphor. “Drawing is my livelihood,” runs the text on the left page, and the right page continues, “and my reason for getting out of bed.” On the next page, the text is torn away, along with the neck and top of the head of 70

the figure, to reveal a new page below it. “What if . . .” the new writing says, and continues in the following frame, “I can’t draw anymore?” As the pages are torn and the panels unfold the story, the red pencil—that creative backbone—slips down through the spiral fastener of the notebook. On the fourth panel, the image is almost entirely gone, the front pages torn away, and the words that dominate the image are littered with red pencil shavings. “Would words alone be enough?” the page reads. The final image of the comic shows the torn pages of the notebook scrambled against a dark gray backdrop. The artist notes, “This comic no longer exists in a tangible form—it’s in the bin—trashed! For me this reflects the transient unpredictable nature of lives curtailed by chronic invisible illness.”40

Does pain entail the dissolution of the self-as-artist? As the pages of the note-

book are successively ripped away, and the pencil itself sharpened into a stub, the creative act of violence reveals new blank pages for writing but also fragments and strips the coherent frame of the body. The comic becomes a space where the narrative of the ill body is written and rewritten as both an image of creativity and a threat to the artist’s ability to work. In Knight’s account, the representation of pain attacking the body is itself an expression of artistic vocation, drawing through the pain, a challenge that she meets and overcomes through the comic itself. Discarded it may be, but the comic makes of that trash—pencil shavings, a torn notebook, a heap of ripped papers—something permanent, powerful, expressive of the negation it contains. This is the first of a series: Knight’s new website, “Chronic Comics,” is a powerful archive of comics that document working with and through disability to create art. I think of that homonym, refuse: both what we discard and what we reject, at once a negative and positive way of forming identity.

The Hospital Suite (2014) also takes on the role of pain in the formation of iden-

tity. Drawn by John Porcellino, creator of King Cat, in pen and ink, The Hospital Suite tells the story of three different periods of illness in Porcellino’s life in three movements or acts.41 Written in retrospect, which contrasts Knight’s more immediate representation, the suite of the title evokes not only the hospital room but also a musical suite, a series of short musical pieces played one after another. The title is apt not only because of the structure of the comic but also because Porcellino’s troubles begin with a diagnosis of hyperacusis, a hearing disorder that makes ordinary noises intolerable. He then develops terrible stomach pain, eventually revealed to be a tumor that has pulled part of his small intestine into the walls of the large intestine. Though the surgery is successful, his recovery is slow, and his marriage is among the casualties of his illness.

Porcellino’s line is thin and very black, and he draws against a backdrop

of stark white space (see fig. 4.4). He frequently employs both facial expression and the traditional signifiers of pain in comics—what Mort Walker calls

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4.4  John Porcellino, The Hospital Suite, 2005. © Drawn & Quarterly.

symbolia—emanata, indotherm, squeans, oculama, agitron. Porcellino uses these efficiently and without clutter, so that they nostalgically and affectionately evoke the slapstick tradition of comics and at the same time signal his contemporary and very serious adaptation of them to his own purposes.

Porcellino’s memoir is also in conversation with contemporary graphic

memoirs of illness. For instance, when leaving the hospital Porcellino describes reading Harvey Pekar’s Our Cancer Year (1994). He notes with frustration that Pekar includes a scene that depicts his wedding ring slipping off his finger because he has grown too thin, a scene Porcellino had intended to include in his own memoir. “Pekar beat me to it!!! Oh well, when I do the comic about this I’ll just put that scene in anyway. . . .”42 Porcellino says, marking the scene as a repetition but not as theft. In including this, he also echoes the liminal quality of pain, as both a private and shared experience.

The starkness of Porcellino’s style is in sharp contrast to the busyness of the

hospital—in fact, the most visually crowded page of Hospital Suite is almost all text and depicts the doctors interrogating him.43 For Porcellino, the more intense the experience the more likely we are to be confronted with a blank page. “The pain is mind-blowing, all consuming,” Porcellino writes, and yet he leaves us with the silence of empty space.44 Some artists draw pain as noise; as if in defiance of the noise of his condition, hyperacusis, and the noise of the hospital, Porcellino dispenses with noise in order to isolate the image.

The origins of Porcellino’s aesthetic strategy are clear and ever-present in

the book, from the dedication to the Zen Centre, to the heart sutra that forms his mantra and that he includes on his final page as his last words: “Nor is there pain or cease in pain or noble path to lead from pain. Not even wisdom to attain, attainment too is emptiness.”45 The emptiness of the pages and the simplicity of the depiction of pain is part of Porcellino’s record of how he came to terms with his pain and the possibility of his own death. His is not just a testimonial but also a pedagogic text; by adding the sutra at the end he offers the reader the same tools in their own encounters with suffering.

Porcellino expresses aspects of pain that the pain scale cannot adequately

represent. As Bourke writes: “The metaphors we choose have a profound impact The Comics Pain Scale

on the way we feel pain as well as how that pain is treated.”46 Porcellino’s The Hospital Suite chooses striking and distinctive metaphors, inscribing his own struggle with illness inside the world of Zen Buddhism. He wants the language 72

of Zen Buddhism, including its minimalist aesthetic, to make sense of his illness, rather than the language of the doctors, which seems, by contrast, often cluttered, misguided, wrongheaded. In his comic pamphlet Pain is Really Strange, Steve Haines suggests exploring “intense situations with curiosity rather than fear.”47 If the comics pain scale that I began with aims to identify pain in order to numb it through analgesics, the goal of Porcellino’s The Hospital Suite is quite different: it is to explore pain with curiosity and equanimity. In the other country that is pain, Porcellino offers an alternative to the pain scale in the representation of pain outside measurement, indeed, outside image. He heads straight for that white space, that unnamable territory.

“Language at once runs dry,” Virginia Woolf wrote, but as Biss, Knight, and

Porcellino demonstrate, there are many ways of both imagining and managing pain. Works of graphic medicine offer useful correctives and supplements to the normalizing efficiencies of the pain scale. Indeed, to grapple with the representation of pain is to begin to outline a response, whether through Knight’s active, confrontational struggle or Porcellino’s meditative act of retrospection. We need more ways to express pain even as we need more ways to treat it, and graphic narrative is a growing archive and resource for the question we sooner or later all will face: “Tell me, how much does it hurt?”

Notes 1. Virginia Woolf, Selected Essays (1926; reprint, Oxford: Oxford University Press, 2009), 102. 2. Joanna Bourke, The Story of Pain (Oxford: Oxford University Press, 2014), 28. 3. David Morris, The Culture of Pain (Berkeley: University of California Press, 1991), 18. 4. Ibid., 20. 5. “The Birkbeck Trauma Project,” Department of History, Classics and Archaeology, Birkbeck, University of London, 2012, http://‌www‌.bbk‌.ac‌.uk‌/trauma‌/research‌/pain ‌‑emotions. 6. Bourke, Story of Pain, 7, 53. 7. Douglas Wolk, Reading Comics: How Graphic Novels Work and What They Mean (Boston: Da Capo Press, 2008), 120. 8. Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (Oxford: Oxford University Press, 1987), 3. 9. Bill Noble et al., “The Measurement of Pain, 1945–2000,” Journal of Pain and Symptom Management 29, no. 1 (2005): 14–21. 10. “Stanford PainScale,” EDS and Chronic Pain News and Info, 2015, https://‌edsinfo

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‌.wordpress‌.com‌/2015‌/03‌/01‌/usual‌‑and‌‑unusual ‌‑pain‌‑scales‌/stanford‌‑painscale. 11. “Wong-Baker FACES History,” Wong-Baker FACES Foundation, https://‌wongbakerfaces‌.org‌ /us‌/wong‌‑baker‌‑faces‌‑history. 12. Scott McCloud, Understanding Comics (New York: William Morrow Paperbacks, 1994). 13. “Wong-Baker FACES History.” 14. Allie Brosh, “Hyperbole and a Half: Boyfriend Doesn’t Have Ebola. Probably,” 2010, http://‌hyperboleandahalf‌.blogspot‌.ca‌/2010‌/02‌ /boyfriend‌‑doesnt‌‑have‌‑ebola‌‑probably‌.html. 15. Ludwig Wittgenstein and G. E. M. Anscombe, Philosophical Investigations (1953; reprint, Oxford: Blackwell, 1997), 246. 16. Ibid., 253. 17. Veena Das, “Language and Body: Transactions in the Construction of Pain,” Daedalus 125, no. 1 (1996): 70. 18. Eula Biss, “The Pain Scale,” Harper’s Magazine, June 2005, 11, https://‌harpers‌.org‌/archive ‌/2005‌/06‌/the‌‑pain‌‑scale. 19. Ibid. 20. “xkcd: Pain Rating.” https://‌xkcd‌.com /‌ 883.

21. Biss, “Pain Scale.” 22. Ibid. 23. Ibid., 15. 24. Siri Hustvedt, The Shaking Woman or a History of My Nerves (New York: Henry Holt, 2010), 181. 25. Ibid. 26. Ibid. 27. Wittgenstein and Anscombe, Philosophical Investigations, 293. 28. Biss, “Pain Scale,” 17. 29. Ibid., 13. 30. Ibid., 24. 31. Bourke, Story of Pain, 276, 195. 32. Nigel Jonathan Spivey, Enduring Creation: Art, Pain, and Fortitude (Berkeley: University of California Press, 2001), 25. 33. Charles Bell, The Anatomy and Philosophy of Expression, Internet Archive, 1824, https:// ‌archive‌.org‌/details‌/Bell1844nu34M. 34. Ibid., 156. 35. Ibid., 158. 36. Esther H. Chen et al., “Gender Disparity in Analgesic Treatment of Emergency Department Patients with Acute Abdominal Pain,” Academic Emergency Medicine: Official Journal of

the Society for Academic Emergency Medicine 15, no. 5 (May 2008): 414–18, and Astha Singhal, Yu-Yu Tien, and Renee Y. Hsia, “Racial-Ethnic Disparities in Opioid Prescriptions at Emergency Department Visits for Conditions Commonly Associated with Prescription Drug Abuse,” PLOS ONE 11, no. 8 (2016): e0159224. 37. Biss, “Pain Scale,” 14. 38. Paula Knight, “Chronic Illness and Creativity Comic,” Paula Knight IllustratorWriter, 2017, https://‌paulaknight‌.wordpress‌ .com‌/2017‌/10‌/23‌/chronic‌‑illness‌‑and‌‑creativity‌ ‑comic. 39. Ibid. 40. Ibid. 41. John Porcellino, The Hospital Suite (Montreal: Drawn & Quarterly, 2014). 42. Ibid., 107. 43. Ibid., 20. 44. Ibid., 23. 45. Ibid., 261. 46. Bourke, Story of Pain, 53. 47. Steve Haines and Sophie Standing, Pain Is Really Strange (London: Singing Dragon Press, 2015), 28.

References Bell, Charles. The Anatomy and Philosophy of Expression. Internet Archive, 1824. https://‌archive‌.org‌/details‌/Bell1844 nu34M. Biss, Eula. “The Pain Scale.” Harper’s Magazine, June 2005. https://‌harpers.org /‌ archive‌/2005‌/06‌/the‌‑pain‌‑scale. Bourke, Joanna. The Story of Pain. Oxford: Oxford University Press, 2014. Chen, Esther H., Frances S. Shofer, Anthony J. Dean, Judd E. Hollander, William G. Baxt, Jennifer L. Robey, Keara L. Sease, and Angela M. Mills. “Gender Disparity in Analgesic Treatment of Emergency Department Patients with Acute Abdominal Pain.” Academic Emergency Medicine: Official Journal of the Society for Academic Emergency Medicine 15, no. 5 (May 2008): 414–18. Das, Veena. “Language and Body: Transactions in the Construction of Pain.” Daedalus 125, no. 1 (1996): 67–91. Haines, Steve, and Sophie Standing. Pain Is Really Strange. London: Singing Dragon Press, 2015. Hustvedt, Siri. The Shaking Woman or a History of My Nerves. New York: Henry Holt, 2010. McCloud, Scott. Understanding Comics. New York: William Morrow Paperbacks, 1994.

Morris, David. The Culture of Pain. Berkeley: University of California Press, 1991. Noble, Bill, David Clark, Marcia Meldrum, Henk ten Have, Jane Seymour, Michelle Winslow, and Silvia Paz. “The Measurement of Pain, 1945–2000.” Journal of Pain and Symptom Management 29, no. 1 (2005): 14–21. Porcellino, John. The Hospital Suite. Montreal: Drawn & Quarterly, 2014. Scarry, Elaine. The Body in Pain: The Making and Unmaking of the World. Oxford: Oxford University Press, 1987. Singhal, Astha, Yu-Yu Tien, and Renee Y. Hsia. “Racial-Ethnic Disparities in Opioid Prescriptions at Emergency Department Visits for Conditions Commonly Associated with Prescription Drug Abuse.” PLOS ONE 11, no. 8 (2016): e0159224. Spivey, Nigel Jonathan. Enduring Creation: Art, Pain, and Fortitude. Berkeley: University of California Press, 2001. Wittgenstein, Ludwig, and G. E. M. Anscombe. Philosophical Investigations. 1953. Reprint, Oxford: Blackwell, 1997. Wolk, Douglas. Reading Comics: How Graphic Novels Work and What They Mean. Boston: Da Capo Press, 2008. Woolf, Virginia. Selected Essays. 1926. Reprint, Oxford: Oxford University Press, 2009.

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5

The Tightrope to Equilibrium Parkinson’s Disease in Literature and Comics Irmela Marei Krüger-Fürhoff

Narrating Liminal Experiences Illness narratives in literary texts and comics capture people’s lives in their social settings, describe individual ailments and coping strategies, and discuss concepts of body and identity. Many of these narratives not only offer intimate insights but also seek to find specific artistic ways to present exceptional and sometimes life-threatening personal experiences in texts and images. They contribute to a more diverse view of human life, raise ethical questions, and elucidate how art can convey liminal experiences. At the same time, artistic representations can shape the perception of diseases and their respective therapies and expand individual or cultural interpretive frameworks and scopes of action. In the case of Parkinson’s disease, the physical and psychological effects of both the illness and its therapies have to be negotiated repeatedly due to the twofold treatment approach—pharmaceutical and, in some cases, neurosurgical. Not surprisingly, individuals who are affected want to tell stories about their experiences and decisions.

Parkinson’s disease, previously also known as “shaking palsy,” is a progressive

and, as of yet, incurable disease that affects those afflicted as both individuals and social beings. The shaky, exaggerated or reduced, almost “frozen” motions that come from a lack of dopamine restrict freedom of action, cause an increasingly masklike facial expression, and impede self-articulation and social interaction.

Many patients experience their own bodies in phases of torpor or uncontrollable excessive motions as alien, and they often withdraw in fear of stigmatization from a “society of appeasement,” in which weaknesses and frailty tend to be buried.1 According to the writer Richard Wagner, Parkinson’s disease is a “systematically mind-blowing disease” for involuntary “loners.”2

In cases where medical treatment with dopamine substitutes can no longer

mitigate the symptoms, there has been a neurosurgical option since the 1990s, in which a programmable electronic pulsing device is implanted in the central brain to suppress false brain signals and reduce motor impairments. This “brain pacemaker” can be understood as a neuroprosthesis that makes up for the loss of the body’s own motor function control and as such improves life quality for individuals dealing with Parkinson’s disease. Because the prosthesis adds something, it points to an underlying lack and creates the “phantasy of a primal naturalness.”3 Psychoanalytically speaking, a narcissistic wound (lack of self-control) is compensated for with a different wound (dependence on a device), demanding of the individual a new and complex physical and psychological appropriation of their body.4

From a neurological and medico-ethical standpoint, this surgical intervention

is not unproblematic: the neuro-technical workings of deep brain stimulation— notwithstanding empirical values and clinical successes—are not entirely clear.5 The electrical stimulation can have serious side effects, among them changes in personality as well as psychological disorders such as mania and depression.6 Moreover, the external ability to control emotions, movement, and behavior through direct access to the brain raises issues with regard to the ethical limits and possible consequences of manipulating the organ that is, in contemporary culture, regarded as “character forming” like no other.7 Opportunities and risks of this neuro-technical steering that invades the self must therefore be negotiated on a personal and a social level. One forum for these negotiations are literary and graphic narratives.

This article discusses three literary texts and two comics from Germany,

England, and the United States: Helmut Dubiel’s Deep in the Brain (2009), Ute Schmidt’s Den Kopf öffnen (Opening the Head) (2006), Louise Palmer’s and Lucie Kinchin’s Louise’s A to Z of Parkinson’s (2015), Peter Dunlap-Shohl’s My Degeneration (2015), and Richard Wagner’s Herr Parkinson (Mr. Parkinson) (2015).8 Their first-person narrators—just like their authors themselves—were diagnosed with Parkinson’s between their early thirties and fifties. Three of them decided on deep brain stimulation treatment after a few years. These works of one established academic, two fairly unknown authors, one successful cartoonist, and a renowned writer (at least in the German-speaking world) share a medical diagnosis but differ with regard to cultural context, style, and public reach—and, of course, regarding their protagonists’ personalities. My reading carves out the similarities and differences and argues that some of the texts and comics complement the culturally familiar narrative patterns of struggle, triumph, or defeat with The Tightrope to Equilibrium

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literary and visual metaphors of balance.9 These new metaphors and visualizations offer more flexible and less binary interpretations of the personal illness experiences, are reconcilable with the idea of relational autonomy, and allow for 76

a diversified awareness of not just Parkinson’s but possibly also other chronic diseases.10

Some brief information about the authors might be helpful. Helmut Dubiel was

professor of sociology at the University of Gießen and a member of the directorate at the internationally renowned Frankfurt Institute for Social Research from 1989 to 1997. He died in 2015 at the age of sixty-nine from complications following an accident. His essay Deep in the Brain was discussed widely in the German press and has found its way into several medico-ethical and techno-philosophical articles. Until her retirement due to illness, Ute Schmidt was a secondary-school teacher for German and English, and publishes at a small German press. The narrative Opening the Head is mentioned, among others, in the informational material of the association of Deutsche Parkinson Vereinigung.11 Louise Palmer, who lives in Great Britain, wrote Louise’s A to Z of Parkinson’s together with her daughter, cartoonist Lucie Kinchin. Both women are also active bloggers.12 Their collaborative comic, which is available to the public online at no charge, seeks to raise awareness that Parkinson’s “does not only affect old people.”13 Peter Dunlap-Shohl was a cartoonist at the Anchorage Daily News for more than twenty-five years and has received several awards for his political cartoons. His graphic memoir My Degeneration was praised as “the very model of a graphic medicine book: perfectly balancing . . . the educational and the autobiographical, the clinical and the personal.”14 Dunlap-Shohl is involved in the Alaskan Parkinson’s community, and he hosts two blogs on living with Parkinson’s, whose titles Frozen Grin and Off and On self-mockingly make reference to specific symptoms of the illness.15 And finally, Richard Wagner, born in Banat, is one of the most noted contemporary Romanian-German writers. He was spied on by the intelligence agency Securitate in Ceaus‚escu’s Romania. In 1987, he and his former wife, Herta Müller (who later won the Nobel Prize for Literature), relocated to the Federal Republic of Germany. Wagner received numerous literature awards as poet, narrator, novelist, and essayist. Mr. Parkinson was highly lauded in German-language arts pages and reviews.

Dubiel’s and Schmidt’s life writings and Dunlap-Shohl’s and Palmer’s graphic

memoirs clearly mark the accordance between author subject and narrative self, very much in line with Lejeune’s autobiographical pact.16 Their works hence may be understood as pathographies or autosomatographies.17 Conversely, Wagner’s Mr. Parkinson opens up an auto-fictional space between facticity and imagination:18 “I would, of course, be the ‘I,’ but not entirely. Mr. Parkinson represents Parkinson’s in any situation. The others—doctors and patients, relatives, caretakers, and passers-by—are bearers of their professions and callings. For them, it also holds true that any similarity with living persons is merely coincidental, which, by the way, can be confirmed by our Mr. Parkinson any time.”19 Through

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the conjunctive mood, the “I” is loosely connected with a real person—in other words, the author—whereas the confirmation of the fictionality (!) of all other characters in the text, however ironically, is left to “Mr. Parkinson,” the illness’s fictional personification. Hereafter, I refer to “first-person narrators” or “protagonists” in all five artworks without equating them with their authors. The literary or graphic narratives offer insights into the physical, psychological, and ethical boundary shifts that accompany Parkinson’s as well as its medical and possibly neuro-technical treatments. In my reading I focus on those narrative and visualtextual strategies that reconceptualize personal experiences, open up patients’ agency, and connect individual perspectives with larger social debates.

On- and Off-Phases: Physical Dissociation and Binary Systems In the context of chronic and degenerative diseases, a medical diagnosis often does not separate an unencumbered “before” from an ill “after”; instead, those irritating observations that individuals have made of their bodies receive a new and eventually more troubling meaning. Hence, a recurrent plot element in illness narratives is the description of early symptoms that initially go unrecognized but are given a meaning in hindsight. Ute Schmidt compares the furtive search for illness-related “passages” in medical books to reading erotic passages: the reading self feels recognized when she discovers descriptions that match her own experience and—similar to reading erotica—gets “heart palpitations” and “hot ears.”20 By contrast, Richard Wagner and Helmut Dubiel use no such lustful ambiguity when they refer to how the “hardship with everything, the disconcertion and continuous fear”21 “in retrospect fit together to form a clear trail”22 that would unmask the barely maintained normality as a precarious collection of “already cornered moments of happiness.”23 The power of the medical attribution is all-encompassing, because it readjusts bodily space and time: “The illness not only destroys the life of the affected, but also their past life. Suddenly, everything becomes explainable, and even the small deficiencies now appear as meaningful symptoms.”24 On the one hand, the diagnosis delivers “order into an apparently random series of symptoms.”25 On the other hand, it highlights in a kind of deferred action that the person affected “has long been cohabitating with Parkinson’s” and can “never overcome” the “advantage” of the progressive illness.26 In Louise Palmer’s and Lucy Kinchin’s Louise’s A to Z of Parkinson’s, the diagnosis is predominantly criticized as a negative defining: “I have led an active life. / Then someone gave me a label” (A1–2).27 The label “Parkinson’s,” glued to the protagonist’s forehead as a clearly visible stigmatization,28 becomes, at the same time, the springboard for self-empowerment. “Try to live the best I can for as long as I can” (A4) is the credo beneath the page header “Always look at the Bright Side” (A).

However, the complexity of a life story cannot be reduced to medical diag-

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troubles the more comfortable, but also normative, model of struggle, triumph, healing, and survivorship.29 Conversely, while the progression is not entirely predictable, the disease does not lend itself to “chaos narratives” either, because 78

symptoms can be stalled with medication and almost compensated for by neurosurgical interventions.30 This intersection of logics of what is still, no more, or once again possible has its effects on the narrative form. As Opening the Head puts it: “I can’t . . . draw a line from despair to triumph (classic drama, closed form). I can only describe the struggle between despair and triumph in a series of episodes. Nothing is decided yet.”31 The allusion to illness as “open form” may be attractive in a literary-aesthetic way, but in everyday life—as per Schmidt—chronic illnesses are in violation of the “unwritten rule” that regulates the “maximum duration of concern in the case of illness”: “Once the term is exceeded, the qualification certificate for care may be withdrawn.”32 The classic narrative arc of an illness narrative that aims for physical healing or at least psychological or spiritual gain is thus not only a guide for the individual but also a safeguard for society. Western cultures prefer particular narrative styles33 even when the “progression of the illness” does not necessarily go hand in hand with a “progress” in terms of a “gaining of knowledge, wisdom” for the affected individual.34

Louise’s A to Z of Parkinson’s makes use of the arbitrary but culturally familiar

order of the alphabet to unfold a panorama of illness aspects that, on the one hand, dodges the linear logic of narratives of decline or triumph but, on the other hand, suggests a certain completeness. The main part of Palmer and Kinchin’s comic consists of twenty-six short comics, each the length of a page and in alphabetical order about, among others, “drugs” (11), “freezing” (13), “tremor” (27), “writing” (30), and the essential question “Y me?” (32). The cover picture itself (see fig. 5.1) is more of a tableau than a linear narrative. The line drawings that are layered on top of one another—vacation scenes, visa stamps, a parking permit for the disabled, and a patient information leaflet—are reminiscent of a collage and unfold the story of a multifaceted life, despite and with Parkinson’s, without subjugating itself to a meaningful narrative pattern.

Obviously, the body is of central importance in illness narratives. In Deep in the

Brain, the first-person narrator experiences the diagnosis as a “narcissistic injury” that leads to a separation from the society of the healthy and from his own body: “At first it was rare, but as the illness progressed my body proved itself increasingly often, although never predictably, to be a subject that was separate from me and walked its own inscrutable paths.”35 In the case of Parkinson’s, this splitting of self also includes the medical treatment: Drugs such as L-Dopa counter a first self-estrangement (the self versus the impaired body that no longer complies with the will) with a second, drug-induced estrangement. Medical descriptions explain the drugs’ (side) effects by drawing on a dualistic model of “on” and “off” states. Very much in agreement with medical literature, the first-person narrator in Wagner’s Mr. Parkinson explains: “There are on- and off-phases depending on the medication’s effect. During an off, dystonia or cramping may occur. During

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5.1  Louise Palmer, author, and Lucie Kinchin, illustrator, Louise’s A to Z of Parkinson’s: A Personal Account by Louise Palmer, 2015, cover page. Licensed under CC BY-SA 4.0.

an on, toward dyskinesia, involuntary movements.”36 Peter Dunlap-Shohl’s comic My Degeneration illustrates in two subsequent panels how such an “off” might be perceived from the outside and how it might feel from the inside (see fig. 5.2).

The first panel confronts the frozen first-person narrator with two different,

yet similarly uninformed, reactions of the people around him. While a young girl views the frozen man as a pantomime—as such, an artist demonstrating a spectacle of physical control—the father describes the would-be mime to be an irksome fellow who will give up his superfluous behavior as soon as he realizes it will not lead to any (financial) success: “Ignore him and he’ll go away.”37 Both the child’s staring and the looking away of the adult reveal widespread reactions to persons with disabilities, such as the underlying accusation that someone who acts “differently” is simply simulating or begging for attention.38

The second panel shows the static protagonist in contrast to blurred, fast-

moving passersby and, as such, demonstrates the helplessness of a person with Parkinson’s who feels like an obstacle in the midst of the busy bustle of normality.39 The following panels on the page liberate the hero from his isolation and present two coping strategies that are central to My Degeneration: on the one hand, the support from his wife and son, who wait patiently for the medication to have an effect, and, on the other, the protagonist’s creative, improvisational strategy. Realizing that he may not be able to walk forward but can move backward, he The Tightrope to Equilibrium

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5.2  Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s (University Park: Pennsylvania State University Press, 2015), 34.

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resumes, disregarding decorum and the reactions of those around him.40 The following page assembles numerous “strategies to keep you moving” that are presented with a dry sense of humor, grotesquely recalling instructions for dancing.41 They are examples for the creative balancing act between the protagonist’s desire for movement, the resistance of his body, and the offers of assistance from his environment. “Have a nimble companion start you by placing a toe in front of yours to step over” is one such encouragement.42 Here, nimble refers to a helpful stooped woman with a white hair knot who, despite her age, is promoted to a “movement helper” for the protagonist. Both the old and the infirm, so the comic illustrates, are inventive, have agency, and can offer help.

Because the medication offers a substitute for the lack of dopamine, physicians

and many patients see the body as a machine that can only run flawlessly with the right fuel: “L-Dopa, however, is not dopamine—it is a relative, so to speak. One can of course refuel with diesel instead of gas, but not forever. The engine does not tolerate it well.”43 In this spirit, the first-person narrator in Helmut Dubiel’s Deep in the Brain experiences an off-phase “as if someone had pulled the plug on your body’s mental apparatus and it’s only running on ‘stand-by,’ on back-up current, so to speak” (51). This wording is reminiscent of concepts of homme machine by René Descartes and Julien Offray de La Mettrie, and—in my reading—prepares for the later application of electronic stimulation. Only the first-person narrator in Ute Schmidt’s Opening the Head expresses discomfort when faced with such functional logic: “Only machines can be on and off—binary systems that know only two states” (31–32). She criticizes the mechanical understanding of the body in mainstream medicine and pharmacology that constructs the body as a closedloop system: the varying mix ratios of one’s own and prescribed neurotransmitters would steer the body or turn it on and off like a technical device. Accordingly, as a patient she would merely have to be “adjusted” with drugs “like a car or an oven before baking” (25).

As an alternative to this splitting of self and the mechanistic logic of medico-

technical adjustment, the literary and graphic narratives testify to various coping strategies. One tries an alternative form of splitting in which the illness is not simply externalized (the “other” that one has to “fight against”) but anthropomorphized and personalized. Richard Wagner’s Mr. Parkinson begins in the abstract with “Parkinson’s disease” (24) but soon segues into the “fairly discreet Mr. Parkinson” (34) as a fictional companion who, being a “gentleman” (37), is “not bent on closeness” (113) but illustrates his superiority in conversations with “unassuming academic irony” (41) and a “concise manner of speaking” (114). When he “occasionally trips [him] up” (88), Mr. Parkinson is associated with physical symptoms of an increasingly frightening quality that shift the power balance in disfavor of the narrator: “Yes, Mr. Parkinson was back again. No, we didn’t speak with one another. I was lying down. He sat.” (143)

In Peter Dunlap-Shohl’s My Degeneration, the involuntary “intimacy” (22) with

Parkinson’s is also framed as a (forced) conversation: “Life becomes a sort of The Tightrope to Equilibrium

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5.3  Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s (University Park: Pennsylvania State University Press, 2015), 28.

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dialogue between you and Parkinson’s disease,” the protagonist explains in the chapter “Interview with a Killer” (22). At his first house call, the neatly dressed gentleman named “Parkinson’s Disease” (24.1) politely lifts his hat above an unhealthily greenish face, but the clarifications of his demands soon make him grow into a threatening monster (see fig. 5.3). In a dark shaded, frameless image that takes up an entire page, the giant figure ridicules all medical and individual coping strategies and threatens the protagonist, who is cowering in the outermost bottom corner, trying to escape Parkinson’s symptoms through intense exercise. Despite such horror scenarios, the imagination of the illness as an unwanted companion who cannot be expelled affords Wagner’s and DunlapShohl’s protagonists an opportunity to address an entity and to oppose their own speechlessness and helplessness with a conversation.

The other coping strategy that can be found in Schmidt’s Opening the Head

declares literature as a means of survival and “antidote” (10) in order to “counteract the potentially destructive power of the illness with a creative force” (9). For the first-person narrator in Opening the Head, myths, the Bible, and works of world literature provide a “source of lasting mirth” (10) or (dark) humor, but first and foremost they offer ways for self-expression while leaving room for ambiguity. Literary texts provide “images” to “shape” the protagonist’s own experiences, heighten the perception of “humor and absurdity,” and open up a “space of freedom” via “curious connotations” (14). Indeed, the essay Opening the Head is a continuous dialogue with world literature that is even reflected in the text’s structure: the chapter titles are (modified) quotes from works by, among others, Franz Kafka, Thomas Mann, and Oscar Wilde, and they serve as a principle of organization in order to narrate the stages of the narrator’s personal illness. The interpretation of physical signs of her illness also relies on literary or—more precisely—rhetorical categories. The first-person narrator asks, “Is there a rhetoric of gestures?” (29), not referring to the “accident” of the on- and off-phases but the “ideal case” of a balanced effect of the medication. But even these, she seems to suspect, do not result in more than “caricatures of natural movement” (29). Of course, one could argue that even the gestures and movements of healthy people are a result of cultural learning and as such not “natural” in the sense of being “primal,” but Schmidt—while being thankful for the pharmacologically feasible—is first and foremost interested in demonstrating the limits of the Parkinson’s therapy: “The medication sometimes facilitates almost lifelike movement, but the repertoire of gestural forms remains limited: hyperbole and understatement prevail” (29).

Brain Surgery as Violence and “Inverted Metaphor” Deep brain stimulation, a therapy for advanced Parkinson’s disease that suppresses severe motor disorders and reduces medication dosage and its side effects, is treated differently in the five works discussed here. In Louise Palmer’s and Lucy Kinchin’s Louise’s Alphabet, the procedure is not mentioned. In Richard Wagner’s The Tightrope to Equilibrium

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5.4  Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s (University Park: Pennsylvania State University Press, 2015), 77.

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Mr. Parkinson, it is judged negatively, its critical attitude surprisingly being based on a skepticism toward precisely the mechanistic body concept that the narrator deemed appropriate in describing the effect of dopamine compounds. As the protagonist in Mr. Parkinson puts it: “The neurological procedure, with which parts of the brain are reminded of their homework via wiring, is based on foundational deliberations of the mechanical era that are generally satisfied with a minimum of mobility. And so, walking upright becomes walking upright to the john” (94). According to this, the neurosurgical procedure follows a simplified and merely functional concept of personhood: if one merely wanted to make it to the toilet unscathed—so is the message in Mr. Parkinson—would one hardly need to have their skull drilled open just for that?

Ute Schmidt’s Opening the Head and Peter Dunlap-Shohl’s My Degeneration

report positive outcomes from deep brain stimulation, but they mainly focus on the medical procedure itself. Dunlap-Shohl depicts the operation on a double page, imbuing images and words with juxtaposing, even competing messages (see fig. 5.4).44 The text plane applauds the professional approach of the surgeons, who carefully transform the first-person narrator into an “aspiring cyborg” through the implant.45 In contrast, the images emphasize the profound discomfort associated with the intrusion into the brain. And so, the extreme worm’s-eye view of one surgeon illustrates the patient’s helplessness,46 and the vaguely defined black background color of the double pages, as well as the green of the surgical gowns are reminiscent of the encounter with the monstrous Mr. Parkinson. Because the surgical treatment is presented as a color echo of the illness’s threat, My Degeneration is not an undivided celebration of high-performance surgery. Rather, by using a slight dissonance between words and images, the comic unfolds the twofold disturbance of identity through illness and therapy.

The title of Schmidt’s essay Opening the Head signals that the central offense

is not Parkinson’s disease but the intrusion into the head. The chapter on the surgical operation picks up on the book title and expands it to “Opening the Head. Metaphors” (61), approaching neurosurgery through William Shakespeare’s tragedy Macbeth. When Lord Macduff discovers the murder of King Duncan in the third scene of the second act and, terrified, declares “the Lord’s anointed temple” had been cracked open, he connects a holy space to the part of a human’s skull “in a metaphor” (62) and interprets the physical destruction of the king likewise with an attack on a seemingly untouchable higher order. Along these lines, Schmidt’s first-person narrator explains: “This enormity, this infraction was only accessible to me in this metaphor. This breach of taboo I saw in the opening of the head was subsumed by the image of sacrilege and, as such, strangely not as violent or oppressively realistic. . . . My operation is actually an inverted metaphor: when my head was opened with a normal drill from a toolbox—at least that is how it sounded—and in fact in reality, not metaphorically, I had reached a point of utter helplessness and, at the same time, an extreme moment of new hope” (63–64).

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The horror of the violence in the operation room is, by the power of meta-

phor and the reconnection to literature, reclaimed into the space of the tellable. It is a liminal experience, but—as Schmidt’s references to Shakespeare and the 86

metaphorical talk of broken-open skulls in Büchner’s drama Danton’s Death illustrate—not beyond the cultural thinkable or expressible. Rather, the opening of the skull can be experienced and narrated by drawing on literary texts as “simultaneity of enormity and banality” (64)—with “banality” referring to clinical routine. The procedure is a “literally incisive” experience that is “very difficult to face” (67) but ultimately can be integrated in a personal life story.

For the first-person narrator in Dubiel’s Deep in the Brain, this is slightly differ-

ent. After explaining that the surgical procedure is considered to be “stressful for the patient” but “not sensational in terms of medical technology” (82), he follows with a description whose terror is marked by giving over a central event to oblivion: The operation was infinitely difficult. All told, it lasted almost ten hours. And the most difficult part of the procedure, drilling into the skull while it is rigidly screwed inside a stereotactic ring and one is fully conscious, must have been particularly awful. I can barely remember it. The reason that patients must remain conscious during the operation is because the neurologist assisting the surgeon must test the functionality of the stimulator while the operation is still in progress. A friend of mine told me of a telephone conversation that I apparently began while still in the best of moods. He asked me about the operation, and I described the drilling in my skull. Apparently, in order to amuse the caller and demonstrate my detachment from the event, I compared myself to a dog whose house is being attacked with a chainsaw. My speech then became unintelligible, I suddenly began to cry and simply aborted the call. (84–85)

The “experience of having suffered violence” (88), illustrated by a dog who is helplessly witnessing the destruction of its shelter, crosses the limits of the expressible and leads to a breakdown. Deep in the Brain criticizes the medical doctors, who discount the shortness of breath, dizziness, and depression—“post-traumatic stress reactions” (99) according to the protagonist’s later assessment—as simulation and exaggeration. However, the experience that “my world shattered into pieces” (85) also leads to the first-person narrator seeing himself as part of a patient collective. Numerous people suffered from postoperative nightmares of “such substantial homogeneity across subjects that one could almost speak of a collective unconscious,” articulated in dreams of “murders, lynchings, mass rapes, massacres, etc.” (87). While Ute Schmidt conceives of an imaginary collective qua literature in Opening the Head, Helmut Dubiel refers to the similarities in the human psyche’s coping strategies and shared narratives of the unconscious in order to hint at possible, supra-individual connections.

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Artificial Naturalness, Self-Regulation, and Concepts of Equilibrium In Schmidt’s Opening the Head, the effects of the surgery are summarized in a positive way: “My time is my time again, I can command it myself, I don’t have to adhere to the ‘time windows’ left open by the terrible offs and the equally horrible dyskinesias. And so, I have a future again. And I can be social” (67). The book ends with the hope to be “dancing rumba in red high heels at my next round birthday” (68). Dedicated to a long list of twenty-six female friends, Opening the Head shows that the first-person narrator—and, we might conclude from this paratext, the author—returns to pleasure, community, and zest for life. Dubiel’s Deep in the Brain gives us a far more ambivalent portrait because it focuses on the surgery’s side effects and is inspired by the critical perspective of a trained sociologist. The book’s title already points to deep brain stimulation not being a simple cure: located “deep in the brain” are substantia nigra and striatum, whose impaired dopamine production triggers Parkinson’s disease, but also the electrodes that, together with the impulse conduction, hypodermic neurostimulator, and external programming device, constitute the brain pacemaker. This neural implant relocates the interface between body and prosthesis into the brain, while the external remote control constitutes another interface that is given great significance in Dubiel’s text.47

Deep in the Brain demonstrates how the first-person narrator fights for agency

within the framework of pharmaceuticals, neurosurgery, and after-care neurology, and how he advances to becoming at least a partly sovereign user of the technology integrated within himself.48 This is triggered by severe damages from surgery, above all a significant impairment of his motor speech center. While the brain pacemaker enables the protagonist to move more fluidly, the same is not true for his speech: he finds himself inarticulate, slurring his voice and speaking too softly, an impairment that makes further academic teaching and lecturing close to impossible.49 For the professor, “the upshot of this major and extremely expensive surgery had been to replace one set of grave symptoms with another” (93). After one year of suffering, he finds a way out by repeatedly and temporarily turning the neuro-technical device on and off. The moment of the first turning off is described as follows: “That very second my voice returned, sonorous and clearly enunciated, only slightly hoarse. Interestingly, not only was my speech immediately functional in a technical sense, but my intellectual activity and cognitive faculties were quite literally switched on again. During the fifteen minutes that we turned off the device, it was as if a PC were booting up in my head, and its clicking and whirring were signaling that my brain was working” (118).

Strikingly, the triumph of the individual, who is able to speak while discon-

nected from the brain pacemaker, is narrated with precisely the sort of vocabulary that is learned on technical gadgets: shutting off one electrical device is experienced as the turning on of another (“as if a PC were booting up in my head”).

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Therefore, this passage is not a critique of a mechanical understanding of the body but rather a switch between two registers. Because the processes involved in Parkinson’s therapy are already described in mechanical-dualistic metaphors, 88

the individualized therapy—not necessarily intended that way by the manufacturer—can rely on the same dualistic logic of “On/Off.” Along these lines, it is only fitting that Dubiel himself draws on the notion of “conviviality” by philosopher and critic of society and medicine Ivan Illich.50 Illich uses this concept to describe the possibility of an “autonomous and creative intercourse” with tools and machines, demanding an implementation of technical progress that serves the living.51 For Illich, tools “foster conviviality to the extent to which they can be easily used, by anybody, as often or as seldom as desired, for the accomplishment of a purpose chosen by the user. . . . Their existence does not impose any obligation to use them. They allow the user to express his meaning in action.”52 Of course, the pacemaker technology can also be used in a manipulative way, as it technically facilitates “intimate, spontaneous reactions” and has the “potential for social control.”53 However, this does not prevent the sociologist from using his own neuromodulator convivially—that is, according to self-chosen goals, firmly believing in being the master of his neuroprosthesis.

For this balancing strategy of generating a seemingly natural day-to-day life

with the help of technical support, technology philosopher Oliver Müller and medical ethicist Franziska Krause use the term artificial naturalness.54 Drawing on German philosopher and sociologist Helmuth Plessner, who in the late 1920s developed the concept of man’s ineluctable “natural artificiality,”55 and on more recent research in science and technology studies, Müller and Krause examine the use of technology that may “facilitate, support or even ‘restore’ vital processes.”56 As a technical artifact that steers “natural” movements but at the same time evokes the association of man-machine or cyborg, deep brain stimulation is based on an “interrelationship between natural artificiality and artificial naturalness.”57 Dubiel’s literary essay is “an example of how neurotechnology can be integrated in someone’s life, his experiential horizon, his self-concept and self-image.”58 At the same time, it demonstrates how neuro-technically facilitated freedom and limitations can be negotiated individually, and how this can be narrated.

For the construction of a subject, social environment is also central. And so, the

first-person narrator in Dubiel’s Deep in the Brain talks about how he felt subjected to the expectations of his colleagues and his son at an academic event, yet how his flexible handling of the brain pacemaker assured him of his own powers of self-control: I had on occasion lowered the amplitude of the remote control and thereby achieved modest gains in my ability to speak, although I had never had the courage simply to turn the thing off. And yet, that’s exactly what I now did, about ten minutes before it would be my turn in the sequence of speakers. I willfully accepted the possibility that this might make me collapse or experience an attack of weakness. Even that

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would have been better than making unintelligible, poorly articulated comments in a feeble voice. It went well. Actually, it came off brilliantly, even though I was somewhat hoarse. At least for the ten or so minutes that I spoke, I was my old self again with the physical and intellectual ability that had been at my command before the operation. Since I was so afraid of undesirable side effects, I turned the unit on again after my short presentation. Even my son didn’t notice anything. But when I was done speaking he whispered, “That was really great. You see, you can do it after all.” I was overcome with wild joy, dampened only by the sadness that I couldn’t really share it with anyone. The possibility of turning off the pacemaker’s remote control for a time, at the touch of a button, and enabling myself to speak as clearly and succinctly as before, ensured that I could retain my job and restored my pride and professional authority. (123–24)

The experience of regaining verbal precision through a short-term emancipation from the otherwise vital brain pacemaker and the recognition from his son are a momentary victory over his own frailty—a victory gained with and against the machine. By alternating between states of being “on” and “off” and by manually regulating his neuro-technical device, Dubiel negotiates between the restrictions imposed on him by Parkinson’s disease and by the assistance but also the confinements of high-tech medicine: For some time, I’ve had a regulator that allows me to adjust the pacemaker amplitudes on my own, according to a scale prescribed by my doctor. Depending on whether I need to walk for some distance or speak in public, I have to enter commands . . . much the way I would on my computer. . . . I have begun to reconcile myself with my pacemaker. It gives me energy and mobility. I can accept it now because I more often take the liberty of turning it off. Then I can think, talk and formulate thoughts as I speak, just like before, as if nothing had ever happened— although only for two hours. (127–28)

Intermittingly turning his pacemaker on and off, the protagonist takes a certain “liberty” in order to resume a fragile but acceptable equilibrium. At the same time, this self-empowering strategy reaches beyond the dualistic concept that seems to inform the text. By relying on slight repercussions of the respective preceding state, it introduces time and gradation into the picture. Switching the pacemaker off, for example, leads to still being able to move for a short period while already having the ability to talk fluently. Roughly a decade after the publication of Deep in the Brain, the narrator’s “unruly” attitude to reclaim his agency has turned into clinical common sense. A 2017 medical book on how to program and control deep brain stimulation suggests: “When in doubt, turn the pulse generator off and wait.”59

The cultural metaphor—and hence the expectation—that patients have to

fight their illness conflicts with the lived experience of a chronic, progressive, and

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5.5  Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s (University Park: Pennsylvania State University Press, 2015), 90.

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incurable affliction.60 Instead of drawing on such teleological concepts that favor reaching out for a clear-cut goal, both Dubiel and, as I will argue, Dunlap-Shohl replace dualistic ideas of victory and defeat with dynamic concepts of balance and equilibrium that are created and sustained in community. The protagonist in My Degeneration explains: “In making our condition a struggle with a tireless, powerful, and relentless adversary, we may be asking too much of ourselves” (89). Conversely, the concepts of balance and equilibrium not only allow for a more nuanced and indulgent view of coping with chronic conditions but also share the ethical and political impulse to reconceptualize cultural narratives of illness. My Degeneration uses a balancing act quite literally—namely, Philipp Petit’s tightrope walk between the Twin Towers of the New York World Trade Centers in 1974—to introduce the new metaphor (see figs. 5.5 and 5.6). The narrative blocks on the double page present life with an illness as a challenge, as even a kind of peak performance, for which the positive qualities of an artist are required: “Petit’s stroll through the sky took discipline, imagination, courage, and balance, as does living with Parkinson’s Disease” (91.1). The second panel in figure 5.6 expands this perspective by pointing out that such a balancing act can only be accomplished with the help of “assorted co-conspirators and friends” (91.2). Anyone living with a severe chronic illness is therefore dependent on the support of relatives and like-minded people. For Dunlap-Shohl, autonomy is relational, and each life, not just one with a progressive illness, is a balancing act—a message by which the acrobat as created by the cartoonist also speaks to a broader community.61

However, the image of the tightrope walker also expresses that My Degenera-

tion does not have a unilaterally optimistic view of Parkinson’s. The two towers between which the rope is stretched—like stage curtains—offer a view of the small artist in front of a gray sky, slightly brightened surrounding the balancing figure. Behind the black-framed panel, however, arises the threatening grimace of a green-black monster in front of a dark background that holds a tiny falling figure with eyes wide open. It is the Parkinson’s monster, well known to the reader at this point, that looms over the tightrope artist’s balancing act. If, however, the reading direction of the double page is significant, the monster’s menace can at least be kept at bay with the patient’s and his social surroundings’ efforts, or— to take the metaphor further—balanced out. The first-person narrator knows of his imminent fall but declares: “But until that Fall comes . . . / The only way is Forward” (92.2). In this way, My Degeneration conveys two contrary yet complementary perspectives that narrate the manifold experience of illness.

Writing and Drawing the Afflicted Self How do Dubiel’s essay and Dunlap-Shohl’s comic present the experience of Parkinson’s and deep brain stimulation, and how are these liminal experiences transformed into the aesthetics of a literary text and the image-text combination of a comic? If we rely on Dubiel’s description of the protagonist’s competing The Tightrope to Equilibrium

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5.6  Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s (University Park: Pennsylvania State University Press, 2015), 91.

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faculties to either speak and think consistently or to move smoothly, most parts of the essay must have been written while the pacemaker was switched off, leaving a rigid or shaking writer who enjoys the brightness and intellectual fluidity of ideas and words. However, this scenario is neither made explicit nor is it palpable to the reader. Instead, Deep in the Brain presents a narrator who talks about his (temporary) difficulties to master thinking and writing, while the text itself bears no trace of ruptures, ellipses, dead-ends, and new beginnings. Instead, it presents a narrative voice that not only looks back on an unrestricted life before diagnosis but also on illness-related difficulties he has overcome. Even though Parkinson’s disease is conceptualized as chronic and progressive, the firstperson narrator often talks in a distanced voice, as if being outside or even beyond his own affliction. The fact that the essay opens and closes with a kind of bird’seye view of a southwest German landscape also conveys a sense of mastery. This bird’s-eye view certainly relies on the narrator’s coming to terms with the intricacies of his brain pacemaker, but at the same it testifies to his reluctance to articulate the body as a site of vulnerability, resistance, and altered experiences. In most passages of Deep in the Brain, the body is either mute and absent or the object of shame. When the protagonist concedes, “I must resign myself to being viewed as handicapped” (128), he identifies with a normal/handicapped distinction that disability studies has proven to be destructive and false. Although he has caring friends and family members, he mainly focuses on the “social annoyance” (79) he has to cope with and leaves little room for social support and relational autonomy.

Hence, a reading that sets the concept of a fragile equilibrium against an

absent body and an authorial voice in full control discovers a tension or even contradiction at the center of Deep in the Brain. I would like to suggest that this contradiction can be traced back to three aspects: the author’s cultural background as a sixty-year-old West German intellectual with no awareness of disability studies, a traditional male concept of embodiment that hails the time when the protagonist was “virile and in full control of my life” (38), and, finally, the genre expectations and media-specific qualities of written as opposed to graphic illness memoirs. Unlike modernist or postmodern fictional texts, many autobiographically based illness narratives seem to demand for a strong sense of “closure” and prefer rather stable protagonists. Dubiel’s Deep in the Brain adheres to these genre preferences that propose writing as a means to stabilize the author’s identity while at the same time foreclosing representations of illness that meet the destabilizing aspects of living with severe afflictions.

In contrast to Dubiel, Dunlap-Shohl shows little attempts to gloss over his

illness and his ailing body, picturing instead an embodied self that is incoherent and involuntarily plural.62 The powerful self-portrait on the comic’s cover makes the cartoonist’s loss of control explicit to the reader and viewer (see fig. 5.7) right from the start and in one single image.

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5.7  Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s (University Park: Pennsylvania State University Press, 2015), cover.

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His face is presented in shaky lines, with blurred features and multiplied

body parts and glasses, inviting to testify or even share the contradicting experiences of bodily agitation and paralysis. While the title in the speech balloon is clearly legible, the face seems to be in constant movement, making it difficult to “pin down” the central character.63 Throughout the comic, Dunlap-Shohl is the only person with a white space of empty eyes behind his glasses; this artistic choice shows how difficult it is to “read” a person who has lost control of his or her face muscles and wears “the mask of Parkinson’s.”64 While Dubiel’s first-person narrator laments his “grotesque dyskinesias”65 and withdraws from public life to prevent stigmatization, Dunlap-Shohl’s comic displays his protagonist’s outer appearance and interaction with the trained cartoonist’s sense of wry humor. Perhaps the cover may even be read as a reflection on the mediaspecific power of comics as a hybrid genre. The textual level—that is, the “static” and stable lettering—illustrates that a disease can receive a clear-cut diagnosis and become part of medical treatment; however, the pictorial level, taking advantage of comics’ use of speed lines and emanata, puts the body in jeopardy and precludes an easy focus. By combining both modes, Dunlop-Shohl’s graphic narrative tells the story of an illness that can be diagnosed but comes along with a multitude of individual variations. Taken together, the two works of art—and the three others discussed throughout this article—powerfully present “narratives of difference,” recounting personal stories of balancing severe afflictions and support in multiple and complementary ways.

Notes 1. Richard Wagner, Herr Parkinson (Munich: Albrecht Knaus Verlag, 2015), 58. All translations into English are mine. 2. Ibid., 96, 23. 3. Oliver Decker, Der Prothesengott: Subjektivität und Transplantationsmedizin (Gießen: Psychosozial-Verlag, 2014), 12. 4. Lea Schumacher and Oliver Decker, “‘Der sprach, dass er ein Zombie geworden wäre’— Die Erfahrung der Tiefen Hirnstimulation in der Erzählung eines Paares,” in Therapie und Person: Ethische und anthropologische Aspekte der tiefen Hirnstimulation, ed. Arne Manzeschke and Michael Zichy (Münster: Mentis Verlag, 2013), 281–305. 5. Allan J. Bieber, Penelope S. Duffy, and Kendall H. Lee, eds., Deep Brain Stimulation: Indications and Applications (Singapore: Pan Stanford, 2017). 6. Christine Daniels and Jens Volkmann, “Neuropsychiatric Side Effects of Deep Brain Stimulation in Parkinson’s Disease,” in Deep Brain Stimulation: A New Frontier in Psychiatry, ed. Damiaan Denys, Matthijs Feenstra, and Rick Schuurman, 159–73 (Berlin: Springer, 2012).

7. Markus Christen, “Der Einbau von Technik in das Gehirn: Das Wechselspiel von Informationsbegriffen und Technologieentwicklung am Beispiel des Hörens,” in Artifizielle Körper—Lebendige Technik: Technische Modellierungen des Körpers in historischer Perspektive, ed. Barbara Orland (Zürich: Chronos, 2005), 197. 8. Helmut Dubiel, Deep in the Brain: My Life with Parkinson’s Disease, trans. Philip Schmitz (New York: Europa Editions, 2009); Ute Schmidt, Den Kopf öffnen: Ein literarisch-neurologischer Befund. Essay (Rüsselsheim: Blue China Verlag, 2006); Louise Palmer and Lucie Kinchin, Louise’s A to Z of Parkinson’s: A Personal Account by Louise Palmer, 2015, https://‌drawnoutthinking‌.files ‌.wordpress‌.com‌/2015‌/02‌/louises‌‑a‌‑to‌‑z‌‑of‌ ‑parkinsons‌‑compressed‌.pdf;Peter DunlapShohl, My Degeneration: A Journey Through Parkinson’s (University Park: Pennsylvania State University Press, 2015); Wagner, Herr Parkinson. An earlier version of this article focusing exclusively on literary texts appeared in Zeitschrift für Germanistik (Krüger-Fürhoff, 2018). 9. I am indebted to Susan Merrill Squier for drawing my attention to the balancing

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act in Dunlap-Shohl. Parts of the arguments draw on Susan’s and my joint talk “On and Off: Rupture, Cohesion, and the ‘Narrative Thread’ in Graphic and Literary Memoirs of Neurodegenerative Diseases” for the 2016 Conference of the International Society for the Study of Narrative in Amsterdam, Panel “Graphic Medicine: Comics, Illness, and Narrative Theory,” organized by Lasse Gammelgaard and Christina Maria Koch. 10. Natalie Stoljar, “Feminist Perspectives on Autonomy,” in The Stanford Encyclopedia of Philosophy (Fall 2015 Edition), ed. Edward N. Zalta, https://‌plato‌.stanford‌.edu‌/archives ‌/fall2015‌/entries‌/feminism‌‑autonomy. 11. Ralf Schnabel, Parkinson—Gesichter einer Krankheit: Begleitheft zur didaktischen DVD (Neuss: Deutsche Parkinson Vereinigung, 2009), 13. 12. Lucie Kinchin, Drawn Out Thinking (blog), https://‌drawnoutthinking‌.net, and Louise Palmer, Onlysize3 Feet (blog), https://‌onlysize 3feet‌.wordpress‌.com. 13. Palmer and Kinchin, Louise’s A to Z of Parkinson’s, 4. 14. Jared Gardner, “Show Me Where It Hurts: Part 2.” 2016. http://‌www‌.publicbooks ‌.org‌/show‌‑me‌‑where‌‑it‌‑hurts‌‑part‌‑2. For the comics genre of graphic medicine and its cultural and political impact, see MK Czerwiec et al., Graphic Medicine Manifesto (University Park: Pennsylvania State University Press, 2015). 15. Frozen Grin (blog), http://‌frozengrin‌.blog spot‌.com, and Off and On: The Alaska Parkinson’s Rag (blog), http://‌offandonakpdrag‌.blogspot ‌.com. 16. Philippe Lejeune, On Autobiography (Minneapolis: University of Minnesota Press, 1989). 17. For pathographies, see Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography (West Lafayette: Purdue University Press, 1993); Arthur Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago Press, 1995); and G. Thomas Couser, Recovering Bodies: Illness, Disability, and Life Writing (Madison: University of Wisconsin Press, 1997). For autosomatographies, see G. Thomas Couser, Signifying Bodies: Disability in Contemporary Life Writing (Ann Arbor: University of Michigan Press, 2009), 1–15. 18. Christina Schaefer, “Die Autofiktion zwischen Fakt und Fiktion,” in Im Zeichen der Fiktion: Aspekte fiktionaler Rede aus historischer und systematischer Sicht, ed. Irina O. Rajewsky and Ulrike Schneider (Stuttgart: Franz Steiner Verlag, 2008), 299–326, and Frank Zipfel, “Autofiktion,” in Handbuch der literarischen Gattungen,

Pathographics

ed. Dieter Lamping (Stuttgart: Alfred Kröner Verlag, 2009), 31–36. 19. Wagner, Herr Parkinson, 5. 20. Schmidt, Den Kopf öffnen, 11. All translations into English are mine. 21. Wagner, Herr Parkinson, 21. 22. Dubiel, Deep in the Brain, 23. 23. Wagner, Herr Parkinson, 22. 24. Ibid., 110–11. 25. Dubiel, Deep in the Brain, 31. 26. Wagner, Herr Parkinson, 27, 28. 27. The number following a page number refers to a specific panel, counting from the top left to the bottom right. 28. Ellen Forney shows diagnosis as stigmatizing signpost (including an ICD-10-CM code) in her graphic narrative Marbles: Mania, Depression, and Me (New York: Avery, 2012), 19. 29. Kathlyn Conway, Illness and the Limits of Expression (Ann Arbor: University of Michigan Press, 2007). For a critique of the tyranny of the comic plot, see also Couser, Recovering Bodies. 30. Frank, Wounded Storyteller. 31. Schmidt, Den Kopf öffnen, 10. 32. Ibid., 58. 33. Anne Finger, “Writing Disabled Lives: Beyond the Singular,” Publications of the Modern Language Association 120, no. 2 (2005): 610–15, and Nina Schmidt, “Autobiographische Krankheitserzählungen in der Gegenwartsliteratur: Siri Hustvedt, Paul Kalanithi, Verena Stefan,” Diegesis 6, no. 2 (2017): 138–59. 34. Schmidt, Den Kopf öffnen, 26. 35. Dubiel, Deep in the Brain, 38, 39. 36. Wagner, Herr Parkinson, 44. 37. Dunlap-Shohl, My Degeneration, 34.1. 38. Rosemarie Garland-Thomson, Staring: How We Look (Oxford: Oxford University Press, 2009), 79–94. 39. Dunlap-Shohl, My Degeneration, 34.2. 40. Ibid., 34.3–7. 41. Ibid., 35. 42. Ibid. 43. Wagner, Herr Parkinson, 49–50. 44. For ways in which words and images in comics can play against each other, see Charles Hatfield, “An Art of Tensions,” in A Comic Studies Reader, ed. Jeet Heer and Kent Worcester (Jackson: University Press of Mississippi, 2009), 132–48. 45. Dunlap-Shohl, My Degeneration, 77.2. 46. Ibid., 77.1. 47. Sabine Kienitz, “Prothesen-Körper: Anmerkungen zu einer kulturwissenschaftlichen Technikforschung,” Zeitschrift für Volkskunde 106, no. 2 (2010): 146. 48. For the concept of the partly sovereign user, see Karin Harrasser, Körper 2.0: Über die technische Erweiterbarkeit des Menschen (Bielefeld: Transcript Verlag, 2013).

49. According to academic practice, the body—the nonfunctioning body in particular—is meant to be invisible. In the context of fund-raising for Parkinson’s research, there are other strategies available. For a targeted use of the “rhetoric of the disabled body,” see Nicole Quackenbush, “Speaking of—and as—Stigma: Performativity and Parkinson’s in the Rhetoric of Michael J. Fox,” Disability Studies Quarterly 31, no. 3 (2011), https://‌doi‌.org‌/10‌.18061‌/dsq ‌.v31i3‌.1670, and Peter Wayne Moe, “Revealing Rather Than Concealing Disability: The Rhetoric of Parkinson’s Advocate Michael J. Fox,” Rhetoric Review 31, no. 4 (2012): 443–60. 50. Ibid., 151. 51. Ivan Illich, Tools for Conviviality (New York: Harper and Row, 1973), 11. 52. Ibid., 12. 53. Dubiel, Deep in the Brain, 126, 125. 54. Oliver Müller and Franziska Krause, “Technik im lebendigen Selbst: Natürliche Künstlichkeit und Vulnerabilität am Beispiel der Tiefen Hirnstimulation.” In Funktionen des Lebendigen, ed. Timo Breyer and Oliver Müller (Berlin: de Gruyter, 2016), 43. 55. Helmuth Plessner, Die Stufen des Organischen und der Mensch: Einleitung in die philosophische Anthropologie (Berlin: de Gruyter, 1928), and Jos De Mul, “Artificial by Nature: An Introduction to Plessner’s Philosophical Anthropology,” in Plessner’s Philosophical Anthropology: Perspectives and Prospects, ed. Jos de Mul (Amsterdam: Amsterdam University Press, 2014), 11–37. 56. Müller and Krause, “Technik im lebendigen Selbst,” 45.

57. Ibid., 60; Johannes Hätscher, “Switching ‘On,’ Switching ‘Off’: Does Neurosurgery in Parkinson’s Disease Create Man-Machines?,” in Plessner’s Philosophical Anthropology, 357–74. 58. Oliver Müller and Stefan Rotter, “Neurotechnology: Current Developments and Ethical Issues,” Frontiers in Systems Neuroscience 11, no. 93 (2017), https://‌doi‌.org‌/10‌.3389‌/fnsys‌.2017 .‌ 00093. 59. Erwin B. Montgomery, Deep Brain Stimulation Programming: Mechanisms, Principles, and Practice (Oxford: Oxford University Press, 2017), 168. 60. Hawkins, Reconstructing Illness. 61. Mark Tschaepe, “Representations of Patients’ Experiences of Autonomy in Graphic Medicine,” American Medical Association Journal of Ethics 20, no. 2 (2018): 125. 62. For the concept of pictorial embodiment in autobiographical comics, see Elisabeth El Refaie’s Autobiographical Comics: Life Writing in Pictures (Jackson: University Press of Mississippi, 2012). For a comparative reading of textual and graphic illness narratives, see Krista Quesenberry and Susan Merrill Squier, “Life Writing and Graphic Narratives,” Life Writing 13, no. 1 (2016): 63–85. 63. My Degeneration describes the artistic assistance his first-person narrator gains from learning Adobe Photoshop with the help of his wife (Dunlap-Shohl, My Degeneration, 42–43). 64. Ibid., 36. 65. Dubiel, Deep in the Brain, 39.

References Bieber, Allan J., Penelope S. Duffy, and Kendall H. Lee, eds. Deep Brain Stimulation: Indications and Applications. Singapore: Pan Stanford, 2017. Christen, Markus. “Der Einbau von Technik in das Gehirn: Das Wechselspiel von Informationsbegriffen und Technologieentwicklung am Beispiel des Hörens.” In Artifizielle Körper—Lebendige Technik: Technische Modellierungen des Körpers in historischer Perspektive, edited by Barbara Orland, 197–218. Zürich: Chronos, 2005. Conway, Kathlyn. Illness and the Limits of Expression. Ann Arbor: University of Michigan Press, 2007. Couser, Thomas G. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press, 1997. ———. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan Press, 2009.

Czerwiec, MK, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith. Graphic Medicine Manifesto. University Park: Pennsylvania State University Press, 2015. Daniels, Christine, and Jens Volkmann. “Neuropsychiatric Side Effects of Deep Brain Stimulation in Parkinson’s Disease.” In Deep Brain Stimulation: A New Frontier in Psychiatry, edited by Damiaan Denys, Matthijs Feenstra, and Rick Schuurman, 159–73. Berlin: Springer, 2012. Decker, Oliver. Der Prothesengott: Subjektivität und Transplantationsmedizin. Gießen: Psychosozial-Verlag, 2014. De Mul, Jos. “Artificial by Nature: An Introduction to Plessner’s Philosophical Anthropology.” In Plessner’s Philosophical Anthropology: Perspectives and Prospects,

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edited by Jos de Mul, 11–37. Amsterdam: Amsterdam University Press, 2014. Dubiel, Helmut. Deep in the Brain: My Life with Parkinson’s Disease. Translated from German by Philip Schmitz. New York: Europa Editions, 2009. ———. Tief im Hirn: Mein Leben mit Parkinson. Munich: Antje Kunstmann Verlag, 2006. Dunlap-Shohl, Peter. My Degeneration: A Journey Through Parkinson’s. University Park: Pennsylvania State University Press, 2015. El Refaie, Elisabeth. Autobiographical Comics: Life Writing in Pictures. Jackson: University Press of Mississippi, 2012. Finger, Anne. “Writing Disabled Lives: Beyond the Singular.” Publications of the Modern Language Association 120, no. 2 (2005): 610–15. Forney, Ellen. Marbles: Mania, Depression, and Me. New York: Avery, 2012. Frank, Arthur. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press, 1995. Garland-Thomson, Rosemarie. Staring: How We Look. Oxford: Oxford University Press, 2009. Harrasser, Karin. Körper 2.0: Über die technische Erweiterbarkeit des Menschen. Bielefeld: Transcript Verlag, 2013. Hatfield, Charles. “An Art of Tensions.” In A Comic Studies Reader, edited by Jeet Heer and Kent Worcester, 132–48. Jackson: University Press of Mississippi, 2009. Hätscher, Johannes. “Switching ‘On,’ Switching ‘Off’: Does Neurosurgery in Parkinson’s Disease Create Man-Machines?” In Plessner’s Philosophical Anthropology, edited by Jos De Mul, 357–74. Amsterdam: Amsterdam University Press, 2014. Hawkins, Anne Hunsaker. Reconstructing Illness: Studies in Pathography. West Lafayette: Purdue University Press, 1993. Illich, Ivan. Tools for Conviviality. New York: Harper and Row, 1973. Kienitz, Sabine. “Prothesen-Körper: Anmerkungen zu einer kulturwissenschaftlichen Technikforschung.” Zeitschrift für Volkskunde 106, no. 2 (2010): 137–62. Krüger-Fürhoff, Irmela Marei. “Körperliche Grenzerfahrungen und ‘künstliche Natürlichkeit’ in literarischen Texten zu Parkinson und tiefer Hirnstimulation (Helmut Dubiel, Ute Schmidt, Richard Wagner).” Zeitschrift für Germanistik, Neue Folge 28, no. 3 (2018): 486–501. Lejeune, Philippe. On Autobiography. Minneapolis: University of Minnesota Press, 1989. Moe, Peter Wayne. “Revealing Rather Than Concealing Disability: The Rhetoric of

Pathographics

Parkinson’s Advocate Michael J. Fox.” Rhetoric Review 31, no. 4 (2012): 443–60. Montgomery, Erwin B. Deep Brain Stimulation Programming: Mechanisms, Principles, and Practice. Oxford: Oxford University Press, 2017. Müller, Oliver, and Franziska Krause. “Technik im lebendigen Selbst: Natürliche Künstlichkeit und Vulnerabilität am Beispiel der Tiefen Hirnstimulation.” In Funktionen des Lebendigen, edited by Timo Breyer and Oliver Müller, 43–69. Berlin: de Gruyter, 2016. Müller, Oliver, and Stefan Rotter. “Neurotechnology: Current Developments and Ethical Issues.” Frontiers in Systems Neuroscience 11, no. 93 (2017): https:// d ‌ oi.org‌/10‌.3389‌/fnsys‌.2017‌.00093. Palmer, Louise, and Lucie Kinchin. Louise’s A to Z of Parkinson’s: A Personal Account by Louise Palmer. 2015. https://‌drawnout thinking.files.wordpress‌.com‌/2015‌/02‌ /louises‌‑a‌‑to‌‑z‌‑of‌‑parkinsons‌‑com pressed‌.pdf. Plessner, Helmuth. Die Stufen des Organischen und der Mensch: Einleitung in die philosophische Anthropologie. Berlin: de Gruyter, 1928. Quackenbush, Nicole. “Speaking of—and as— Stigma: Performativity and Parkinson’s in the Rhetoric of Michael J. Fox.” Disability Studies Quarterly 31, no. 3 (2011). https://doi.org ‌/10‌.18061‌/dsq‌.v31i3‌.1670. Quesenberry, Krista, and Susan Merrill Squier. “Life Writing and Graphic Narratives.” Life Writing 13, no. 1 (2016): 63–85. Schaefer, Christina. “Die Autofiktion zwischen Fakt und Fiktion.” In Im Zeichen der Fiktion: Aspekte fiktionaler Rede aus historischer und systematischer Sicht, edited by Irina O. Rajewsky and Ulrike Schneider, 299–326. Stuttgart: Franz Steiner Verlag, 2008. Schmidt, Nina. “Autobiographische Krankheitserzählungen in der Gegenwartsliteratur: Siri Hustvedt, Paul Kalanithi, Verena Stefan.” Diegesis 6, no. 2 (2017): 138–59. https://www.diegesis .uni-wuppertal.de/index.php/diegesis /article/view/293. Schmidt, Ute. Den Kopf öffnen: Ein literarisch-neurologischer Befund; Essay. Rüsselsheim: Blue China Verlag, 2006. Schnabel, Ralf. Parkinson—Gesichter einer Krankheit: Begleitheft zur didaktischen DVD. Neuss: Deutsche Parkinson Vereinigung, 2009. Schumacher, Lea, and Oliver Decker. “‘Der sprach, dass er ein Zombie geworden wäre’—Die Erfahrung der Tiefen

Hirnstimulation in der Erzählung eines Paares.” In Therapie und Person: Ethische und anthropologische Aspekte der tiefen Hirnstimulation, edited by Arne Manzeschke and Michael Zichy, 281–305. Münster: Mentis Verlag, 2013. Stoljar, Natalie. “Feminist Perspectives on Autonomy.” In The Stanford Encyclopedia of Philosophy (Fall 2015 Edition), edited by Edward N. Zalta. https://‌plato.stanford‌ .edu‌/archives‌/fall2015‌/entries‌/feminism‌ ‑autonomy.

Tschaepe, Mark. “Representations of Patients’ Experiences of Autonomy in Graphic Medicine.” American Medical Association Journal of Ethics 20, no. 2 (2018): 122–29. Wagner, Richard. Herr Parkinson. Munich: Albrecht Knaus Verlag, 2015. Zipfel, Frank. “Autofiktion.” In Handbuch der literarischen Gattungen, edited by Dieter Lamping, 31–36. Stuttgart: Alfred Kröner Verlag, 2009.

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6

“Her Leg” Chris Ware’s Body of Work Rieke Jordan

Chris Ware’s 2012 large-scale graphic-narrative-in-a-box Building Stories brings books and bodies of the twenty-first century into close proximity. Ware’s sometimes uneasy yet often very rewarding pursuit to conjoin and conflate body and book creates a nonlinear, idiosyncratic reading experience that portrays a disabled woman’s life in all its facets. This congruence of book and body signals a critical moment in narrating disability in comics, and in this essay, I suggest a careful recalibration of Building Stories vis-à-vis themes of incompleteness and present/ absentness. The metaphor of the disabled body helps unlock the remarkable book that Building Stories is (and vice versa!). Chris Ware stages the conflation between the ordinariness of disability and the extraordinary format of the book: the protagonist’s missing leg calls attention to strategies of rooting disability within the ordinary.1 Ware aligns “her leg” with “her book” to unfold questions that relate to larger implications of the medium of comics in and of the twenty-first century, both unruly and ordinary at the same time. In this essay, I propose that the body turns into a structuring metaphor for the idiosyncratic material and narrative of the graphic narrative. It lays bare alternative understandings of how body and book can find expression in the digital age through non-normate, alternate rhythms and temporalities. By bringing together the spreads “Her Leg,” “Browsing,” and a brief moment at a party, my analysis shows different strategies of narrating the protagonist’s disability and, in conjunction, the ordinariness of it. These three moments strike me as significant in terms of how Ware explores the medium of the graphic narrative and her disability. Here, Ware stacks disability and ordinariness into one another in the visual, textual, and material registers.

Absences and Presences of the Body Building Stories chronicles the life of a woman living in Chicago at the beginning of the twenty-first century. Through her, Ware presents a vision of liberal America as we have known it before the Age of Trump: it is a life of one individual—a middle-aged woman who remains deliberately unnamed throughout the course of the book. She lives through ups and downs, through darkness and joys, and the reader “builds” her life story from a small walk-up apartment in Chicago to her family home in Oak Park. By way of the turmoil of her life, Ware tackles themes such as the 2008 global economic recession, the American housing crisis and its aftermath, reproductive rights, and the digital revolution and its influence on interpersonal relationships, depression, and loneliness. It is Building Stories’ augmenting of the beauty and importance of the minute moment and the ordinary that makes the graphic narrative so remarkable. Ware pays close attention to what daily life looks like, and Simon Willis suggests that Building Stories is a work of “intricate simplicity. It captures an ordinary life in a structure so complex that reading it feels like living that life from the inside, with all the darting variety and fallibility of human thought.”2 The comic booklets often include pages filled with silent panels, with fruit in the supermarket lining the walls, or with snow falling outside of a window. In this sense, Building Stories is deeply invested in depicting routines and little details in life and the small moments “in between.”

Building Stories conveys how life materializes—complex, overwhelming, and

in a nonlinear fashion. The protagonist’s life is told in episodes, fragments, and vignettes that the reader stitches together while engaging with the fourteen booklets included in the oversized box. It thus can be seen as an experimental, yet elusive, twenty-first-century bildungsroman in which Ware explores the sufferings of the dwindling middle class.3 The bottom of the box the novel is sold in (standing in for a dust jacket) explains how Building Stories is ready to address “virtually any imaginable artistic or poetic taste, from the corrosive sarcasm of youth to the sickening earnestness of maturity.” The reader of this book, Ware continues, “is sure to sympathize with the crushing sense of life wasted, opportunities missed and creative dreams dashed which afflict the middle- and upper-class literary public.” To recalibrate these words is to say that the effect of Building Stories’ aleatory nature begs the reader to acknowledge the incompleteness and randomness of the protagonist’s life.

Ware remediates the novelistic tradition of the bildungsroman into that of the

graphic narrative and attempts to find new formats to narrate and “give shape” to an ordinary life lived—predicated on contingency and the fallibility of memory. Both media—novel and graphic narrative—work differently with character development, time, and space. Building Stories turns the protagonist’s journey through life into a process that is being read and made sense of spatially, spread out on the reader’s floor, eschewing linearity. This shifts the “bildung” of Ware’s protagonist toward a media-specific building of her life story. We might say that Ware

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shuns the traditional conventions of a bildungsroman (i.e., extensive travels, the linear development of the protagonist, her integration into society) for the sake of a buildingsroman (excuse this terrible pun), which emphasizes the construc102

tion of the life of the protagonist (through the reader!) on the material, textual, and visual planes of the graphic narrative.

What is oftentimes conspicuously missing in reviews and plot summaries

(and also in the self-descriptive synopsis on the “dust jacket”) is any indication of the disability of the protagonist. The woman wears different prosthetic limbs throughout her life,4 and her left leg ends just below the knee. Her leg is one facet of her life, and it is “situated within an aesthetic of the ordinary.”5 It is indicative that the protagonist’s leg occupies a deprivileged position within the narrative and the reader’s engagement with the material. We can say that the absent leg gives and makes room for other means of characterization. This allocating of the missing leg within the ordinary does not render the disability a moot detail or gimmicky fact. Rather, Ware’s embedding of the missing leg within aesthetics of the ordinary is able to retrieve an “alternative understanding of disability.”6 This goes to say that the protagonist’s missing leg has room, has function, and finds expression in ordinary moments such as walking to work or making drunk small talk in a bar—moments Ware devotes so much time and space to.

It is Ware’s style that helps unlock the deprivileged position of the leg within

the visual and textual plane. Ware explains in an interview with Chris Mautner: “It’s the artist’s or the writer’s duty to try and tangle with what seems unnavigable about life as one experiences it. Though one might not produce any answers, frequently simply showing something can be useful. Human beings generally don’t notice things unless there’s a name for them.”7 Ware tests out visual language for the ordinariness of her leg, showing it rather than finding descriptions for it. He privileges a pictorial negotiation (“showing”) of her disability, which helps illuminate its potential to be ordinary but simultaneously disrupts. In this way, the missing leg embraces both Roland Barthes’s notion of the punctum (as a “partial object”) and W. J. T. Mitchell’s famous mandate to think about what “pictures want.” It is not only a desire but also a lack that Mitchell ascribes to the wanting of images. Building Stories therefore asks what the protagonist wants: Chris Ware tackles female desire as well as her aspirations of being an artist. Ware relegates a sense of wanting “more” from life, and the protagonist’s biggest regret is to not have lived life to its fullest potential. She oftentimes thinks she “didn’t have it in her”8 to live a creative life. But “wanting” here also means lacking, relegated toward her leg. It is always present/absent, and it shows what cannot be looked at. The leg thus enfolds in a private meaning à la Roland Barthes that holds the spectator’s gaze through its absence. It is noteworthy that Barthes chooses the word accident for the punctum. This evokes the protagonist’s leg, which she lost in a boat accident when she was young.

The disability of the protagonist unfolds on different registers of graphic story-

telling, testing out the visual and textual planes against each other in terms of

Pathographics

lacking and wanting, presence and absence. To explain what Ware does here— namely, rubbing the dichotomies of present/absent and privileged/deprivileged positioning within the narrative and the pictorial against each other—allows me to turn to the one-page spread “Her Leg.” The protagonist (then younger and living alone) sits in her bathtub and shaves her legs. She just overheard a woman whispering “her leg . . .” on her subway ride home: “her leg . . . is what she said . . . those were her exact words: ‘her leg’ . . . I’ve heard it all, thousands of times: ‘Look at her leg’ . . . ‘Do you think her leg is fake?’ . . . ‘That’s not really her leg . . . ’” The spread switches from shower to subway and back to shower, and the protagonist ponders about this angrily: “My real leg is buried in a decomposing biohazard bag somewhere, or incinerated, or whatever it is they do with stuff like that . . . ‘part of the earth,’ ‘feeding the flowers.’ . . . Maybe she’s even breathed in some of ‘me’ at some point . . . ha ha. . . .” But then she attempts to reason with herself, for the girl who made the comment is probably a “perfectly nice person who didn’t mean a thing. . . .”

The spread toys with seeing what is there while thinking about what is

absent—and what has the potential to be disruptive in its absentness. Ware depicts a very intimate, yet also very ordinary, moment in a woman’s life to explore the tension between the social stigma of disability and the ordinary maintenance and grooming of the body. Ware layers the protagonist’s anger on two very common, yet two completely different, moments of daily life: taking a shower and sitting on the subway. This brings public and private into proximity and leads the reader from subway tube to the bathtub. The protagonist is hurt and tries to grapple with these complicated feelings of hearing yet another “her leg . . . ,” for she has heard these words thousands of times. But similarly, she has taken a shower thousands of times, and the spread therefore equally complicates the notion of the “ordinary” while also bolstering it.

The careful reader stumbles over a couple of details here. The spread is

completely silent while seeming transgressing and almost violent at the same time (we look on while the protagonist is naked in the shower). Shaving one’s leg is a routinized yet extremely private moment; it is a part of some people’s beauty regimen that is at the same time close to self-mutilation. Pressing the razor blade too deep into the skin will result in self-harm. Ware depicts a moment that literally scratches on the surface of bodies and emotions, removing unwanted hair and feelings from the protagonist’s body. The razor in her hand goes up the leg, and up again, following routine movements. Ware includes the sounds of the shaving gel can (“psssshhht”), the razor on her skin (“sktch, sktch”), and the water going down the drain (“glglg glg”) to disrupt the quiet in the bathroom. The stubbles float down the drain and might feed the flowers, just like her leg once fed the flowers while decomposing.9 The circular motion of the water going down is at once calming but also suggests that she probably thought the same thoughts and shaved the same leg many times. Underneath the peace and quiet of her bathroom lures danger: the last panel is a close-up of the shower drain, reminiscent “Her Leg”

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of Alfred Hitchcock’s Psycho. In the movie’s iconic bathroom scene, Hitchcock finds visual language through the montage technique to explore another vulnerable young woman taking a shower. 104



This draws attention toward a perplexing interpretive situation that produc-

tively speaks to “Her Leg”: it portrays a woman concentrated on shaving her shorter leg while pondering what is absent from that very leg.10 With the spread being entirely silent (aside from the sounds of the razor, the shaving cream can, and water), the protagonist’s vulnerabilities echo in the unsaid and the visual intertextual references. It is the unspoken that dominates the textual plane, and the reader is left to wonder whether the girl even said “her leg” in the first place.11 There is no speech bubble indicating any whispering between the girl on the subway and her boyfriend. Yet the protagonist scoffs angrily: “What do they really mean, anyway: ‘My’ leg? Of course it’s mine . . . just the same way those were ‘her’ shoes or ‘her’ purse or ‘her’ stupid boyfriend with his stupid pointy sideburns.” But what is lost remains: “While the leg is gone, it remains as an absence. . . . The reader cannot help but notice the leg as absence, and the absence registers, itself, as a presence, a marker of individuality.”12 Daniel Worden’s comment further complicates the notion of the present and absent on the different planes: for nothing is being said; however, sometimes nothing says everything.

Christopher Irving outlines that one “manifestation of Chris Ware’s language-

based approach was to focus solely on images in his work, eliminating the old “words and pictures” cliché always used in describing comics, deconstructing it by eliminating words from his comics work.”13 This “eliminates” the layering of the verbal and textual planes. It draws attention to the medium’s ability to show and not tell, and to tell and not show. But when there is elimination, there is replacement close by, and the protagonist equates the prosthesis with shoes and purses and ponders: “Anyway, I’ve had six legs now total . . . people don’t realize it, but when your body changes, the prosthesis has to change, too. . . . I’ve had my kid legs and my teenage legs and my college legs. . . . I’ve even had skinny and fat legs, though I hate thinking about that part of it. . . .” What strikes me here is how she puts her prosthesis in one line of thought with shoes and purses—things she might shop for on an ordinary Saturday afternoon to waste time, things she thinks she might “want.” This accommodates and equates her prosthesis with a commodity that is interchangeable but comes with a price of both wanting (shoes, purses) and lacking (a voice).

The shame she feels about the “fat leg” gestures to another scene that narrates

her disability via vulnerability in public and private spheres. In an untitled spread, the protagonist makes small talk about her leg—this moment is set many years later in life, once the protagonist is married and has moved to the suburbs with her husband and child. She “cornered” a “poor kid” at a professional function for her husband at a fancy bar somewhere in downtown Chicago. She talks about private matters, like her father’s death and her accident that led to the amputation of the lower part of her leg. She has gotten a bit too drunk and thinks to

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herself: “Jesus, did I really mention that?” In this scene, the reader gets the story about her accident straight from her lips, but all she offers are bullet points: “It’s pretty simple: lake . . . boat . . . motor . . . me . . . they though they could save it, y’know . . . didn’t.” Unlike in “Her Leg,” Ware deliberately eschews a flashback here, not transferring the accident onto the visual plane but keeping it solely on the textual plane as drunken, unreliable chatter. The protagonist boasts that her current leg is made of “carbon fiber . . . they’ve gotten really good at making them since the Iraq war, needless to say . . . so don’t fuck with me, man!” (She then thinks to herself: “Oh my god . . . I did not just say that”). The man, though, is in awe, “what? You’ve got an artificial leg? No way . . . that is so cool . . . you’re, like, a superhero.”

They knock on her leg: “toc toc.” What’s there? Notice how both scenes play

with absence and presence on both visual and textual planes. But what does it mean to “be present” here, exactly? And what is being absent? The protagonist isn’t present at the party, certainly. She “spaced out for a second,” thinking how handsome the young man is: “Lord, he is so cute . . . and I’m so old and fat. . . .” It is important that the protagonist does not fixate her inadequacies onto her leg (she even boasts about it!). Rather, her vulnerability pertains to how “fat” and “old” she thinks she is and, also, how she lost her ability to think straight. While “Her Leg” explores the tension between public mutilation and private selfmutilation throughout the sequence of its panels, the scene at the party demonstrates how the protagonist reroutes shame onto different parts of her body that pertain to her being present (i.e., being fat, being old) while she herself is absent (spaced out). Absences of signs of age and weight would be commendable, connoting the successful managing of the body (i.e., losing a few pounds, being wrinkle-free). Likewise, Ware’s circular notion of the drain finds its counterpart here. But not being able to “think straight” is equated with being a little tipsy, oversharing private matters with complete strangers.

When the young man reaches over to touch her leg to see if it is really a

prosthetic limb, she thinks, “Wow, how wildly inappropriate of him but somehow completely innocent and sweet. . . . I guess it helps that he’s, like, melting my heart right now. . . .” Margaret Fink Berman suggests that “when disability seems to be a locus for shame or loss,” a scene like this offers a foil to explore “alternative ways of knowing the protagonist’s body.”14 Moments like these are constituted through “equal or greater shame that are not organized around disability at all” but rather around being a little out of line at a work function (i.e., “God, shut up, why have I cornered this poor kid like this, anyway?”).15 I appreciate Fink Berman’s phrasing of “alternative ways of knowing the protagonist’s body,” for Ware makes the disability visible while simultaneously diverting attention from it.16 The young man’s touch is one way to find an alternative way to “know her body”—other than merely making chitchat about it. After all, the man is melting her heart, and his touch is not inappropriate but sweet and innocent. “Her Leg”

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The man thinks that the protagonist is a “superhero”—her carbon fiber leg

makes her extraordinary and invincible. His offhand remark catapults the reader onto the meta level and shifts attention to the question toward what exactly can 106

be narrated in a graphic narrative. Can a comics book be “merely” about ordinary life? Or does it have to portray a damaged, impaired, disabled superhero, like Iron Man? The young man’s comment implies that the ordinary is indeed extraordinary and superheroic. Paired with his remark, the protagonist wonders about the same thing. Right after the short scene at the party is concluded (it is on the same page!), the protagonist tries to pick out a novel to take with her on vacation (she has Marcel Proust, James Joyce’s Ulysses, and Herman Melville’s Moby-Dick on her shelf). The protagonist thinks to herself: “Fuck! Why does every ‘great book’ have to always be about criminals or perverts? Can’t I just find one that’s about regular people living everyday life?” When is this short sequence set? Before or after that conversation at the party? What material (pun intended!) is the extraordinary/ ordinary, absent/present life made of? Are there alternate ways of knowing the body and the book? I suggest that the non-normate17 construction of the protagonist’s body in the shower and at the party asks questions about the non-normate nature that the book has. Put differently, the absence of her leg allows for a careful interrogation of non-normate materials for “great books” in the twenty-first century. And Building Stories’ format is quite extraordinary to portray ordinary life: it allows the reader to grapple with alternative understandings of the ways graphic narratives can narrate the ordinary nestled within the extraordinary.

The Segmented Work of the Body Building Stories really does not look like a book at all. It is sold in an oversized cardboard box, compiled of fourteen idiosyncratic pamphlets, booklets, or magazines (among other print media), which can be read in any order. The pamphlets are discrete while not being self-contained, and mathematically speaking, there are potentially over nine billion ways to combine the booklets included in the box. No reading experience will ever be like the previous one, and the graphic narrative self-reflexively negotiates the constructedness of its own medium and history. It is often approached as a playful commentary on the medium of the book in the twenty-first century: Building Stories asks for time and patience in an age of instant downloads and enters the “debate on the future of the book as active social agents that perform cultural work not merely as discursive, but also as material interventions.”18 Kim O’Connor calls it “a love letter to print in our post-Kindle world.”19 Approached from this angle, Building Stories certainly caters to buzzwords of the internet era, and it is interactive and malleable in the most literal sense. It cannot even be read on a kindle or iPad, for Ware stages the haptic experience of engaging with the booklets as a quintessential component of making sense of the story. Both the size of the box and the craftsmanship of the panels are remarkable, and by pressing the material quiddities of the booklets

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(i.e., its idiosyncratic design and the different sizes of the booklets), the box is able to explore “latent possibilities of reorganizing . . . narrative discourse.”20

Building Stories entices its readership to acknowledge the book’s extraordinari-

ness and its incompleteness as its key modus operandi, relying on the reader’s physical engagement to “get more at the way stories and memories are available from all sides and moments in [her] memories, and not really part of a continuum,” as Ware points out.21 Yet how to understand the “incompleteness” of the protagonist’s body in relation to this conversation about the latent possibilities contained within the unruly nature of the book? How do they function as a foil to each other? The box, I argue, extends the discussion of the visual and textual planes of the absent/present dichotomy toward the material plane. Similar to the young man’s touching “her leg” at the party, the reader’s haptic engagement creates alternative ways to know the book. In this way, Building Stories is dependent on her leg to likewise explore the idiosyncratic, non-normate packaging of the graphic narrative and the disability narrated through it. Her leg remains important as a part of “characterization and emphasizes the work’s focus on the partial and segmented body.”22 And we can extend Freedman’s assertion by integrating the material plane into this line of thought to grapple with the ways Building Stories explores the partial and segmented body of the book and the protagonist. To argue more forcefully, I suggest that it is no longer the body of work but the work of the body that stands as one of the main concerns of Building Stories.

“Her leg” is to be seen as shorthand for debates in and around the body of

work (i.e., the material playfulness of Building Stories) and the work of the body (i.e., her walking slowly to work or walking slowly up the stairs). Here, disability studies give impulses to acknowledge non-normate points of identification made available in a graphic narrative such as Building Stories. As Sarah Birge suggests, it is the medium’s “ability to represent complex interactions of emotions, thoughts, movements, and social relationships” that creates a “promising opportunity for remedying the inadequacy” of disability in and through other forms of narration.”23 Similarly, Susan Squier’s assertion that graphic narratives such as Epileptic by David B. and The Ride Together by Paul Karasik and Judy Karasik “unsettle conventional notions of normalcy and disability” helps acknowledge that the medium of the graphic narrative can unveil potentials toward the interlacing of form and story.24 Redirecting Squier’s assertion toward Building Stories is one way of acknowledging how format, disability, and readerly interaction stand in conversation with one another. Notice that Building Stories literally deconstructs its own mediality (i.e., it being a “buildingsroman,” compiled of loosely interconnected booklets). It self-referentially comments on normate constructions of stories, bodies, and books and unsettles them accordingly.

The interaction with Building Stories articulates practices (a certain style of

walking down the street) and accoutrements (i.e., her prostheses) that deviate from conventional notions of normalcy. I agree with Margaret Fink Berman, who ascribes “particular, idiosyncratic articulations of one’s belonging across social “Her Leg”

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and physical space and accounts for particular accoutrements (crutches, shower chairs, prostheses) and practices (a certain style of climbing the stairs)” within graphic narratives that narrate disability.25 Ware amplifies these practices, for he 108

includes the reader’s body. The chance-based reader’s gestures expand the way she can know the graphic narrative and the comics’ functions on a material level. To borrow from Sarah Birge, a book such as Building Stories necessitates “interactions between reader and text that allow for fuller understanding of disabilities as they exist in relation to society.”26

This relates to the destabilization of the conventions of the format of the

book and refers back to Susan Squier’s comment about the medium’s potential to reroute and reframe discussions on normalcy and disability. Ware places the body and the book into a complicated relationship, for the reader’s body performs work that punctures the graphic narrative rhythms, enabling an idiosyncratic reading experience each and every time. Conventional graphic narratives set rhythms through panels, gutters, the turning of the page, and even serialization and publishing modes. Her reading the book is tied to a body of work that fails, ages, decomposes, and is disabled. Building Stories does not have a spine—it is incomplete and not “able-bodied” in this sense.27 Building Stories’ dispersed and chance-based functions allude to the prosthetic constructedness of its own body of work. Building Stories extends the gap of the gutter toward a gap that insinuates itself in the reading experience by reaching for a new booklet or struggling to keep the oversize newspaper pristine. Hence, the reader’s body functions as the non-normate in this interaction. Reading Building Stories unravels alternate accoutrements for the reader, which already begin when she lifts the heavy box from the bookshelf. She bends over the cardboard box, kneels on the floor, reaches around, picks the next booklet, puts the booklets back into the box, and heaves it back onto her bookshelf. These are idiosyncratic practices and gestures pertaining alone to Building Stories that, of course, presupposes an able-bodied reader. And for each and every reader, the book interlaces chanciness with the reader’s bodily engagement differently. In general, the medium of comics “mobilize[s] characters’ gestures, postures, and facial expressions to tell stories,” and thus comics are especially suited “to communicate the embodied meanings of an impairment.”28 In Building Stories, this mobilization of gestures and postures extends onto the material plane (i.e., reaching around, picking up the box, folding the newspaper back together) and communicates the material meanings of impairment.

We should hence take into consideration the individual, non-normate rhythms

that text, visuals, and material make available for the reader (and vice versa: the way the reader’s individual engagement unsettles tried and tested conventions of the medium). Georgiana Banita underlines how “the awkward, labor-intensive rhythms of the graphic novel delay and retrack narrative development, waylaying readers with constant interruptions and slowing their progression.”29 Banita’s comment refers to Chris Ware’s earlier graphic narrative, Jimmy Corrigan,30 but

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it rings true for Building Stories and the reading experience it makes available. Banita’s choice of words outlines a reading experience of alternate rhythms—she introduces the idea of “dazzlingly small steps.”31 It takes four panels to show how a hand shoos away a fly, for example; these panels are “moment-to-moment sequences.”32 Building Stories works with progress from step-by-step, panel-topanel, and moment-to-moment to, finally, booklet-to-booklet. The dazzlingly small steps that both reader and protagonist take create alternate, individualized understandings of how to interact with a graphic narrative. Notice that Banita invites the readership to walk through a book identifying with Jimmy Corrigan walking on crutches. Here, the reader is asked to walk through Building Stories with a woman whose rhythms and routines are predicated on her disability. The interlacing of the disabled body and the body of work invites us to “walk” through the book by evoking the metaphor of small, slow steps that we take with “our legs.” This, in turn, renders the reader as non-normate and bolsters the identification with the other on the material plane most productively.

How can shaving her leg, knocking against the carbon fiber prosthesis, and

the reader walking through the narrative speak productively to one another? In all instances, the body turns into a structuring metaphor for the reading experience that acknowledges both the disability and the ordinariness rooted within it. It repositions disability in our consciousness as readers and moves normate assumptions toward an openness for idiosyncratic lives, materials, stories. This guides us toward the spread “Browsing.” Sitting in a café, the protagonist tells her daughter, who is now an adult, about a dream she had. She relates how in the dream she finds a box in a bookstore. It is filled with all her writings and drawings she had tossed out and thrown away. The protagonist is clearly unsettled by her dream, wiping away tears. She remembers: “I picked it up, and, to my amazement, it was my book.” But the book was not really a book: “It was in . . . pieces, like, books falling apart out of a carton, maybe . . . but it was . . . beautiful . . . it made sense.” The daughter laughs it off as a “retarded” dream, yet the spread suggests that this collection of her writings and her drawings is, in fact, Building Stories. Ware replicates the reader’s astonishment of the unconventional book format through the eyes of the protagonist. In an interview with Chris Mautner, Ware explains that Building Stories is indeed “filtered through the mind of the woman. . . . [While] I don’t want to give too much away, I think at one point or another everyone has a dream where they read a surprising book, or see a huge, complicated painting, or hear a moving song and then wake up and realize that they’d created the whole thing, alone, in their mind.”33 Remember how large parts of the protagonist’s life were predicated on the fact that she thought she didn’t “have it in her.” “Browsing” suggests the exact opposite: the box “had everything in it . . . my diaries, the stories from my writing classes, even stuff I didn’t know I’d written, everything I’d forgotten, abandoned or thrown out was there . . . everything . . . and you know, it wasn’t so bad . . . in fact, it was kind of good. . . . Interesting. . . .” “Her Leg”

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Looking more closely at the spread, there is something peculiar going on.

From panel to panel, the missing leg changes its form—first a rudimentary prosthesis, then a more sophisticated one, then, finally, a book. In the course of her 110

dream, the book the protagonist stumbles upon in the bookstore and her body conflate, dazzling her with what she has created “in her mind.” Her leg stands in for both a prosthesis and a metaphor for the book itself. It is crowbar and prosthesis, dreamwork and a consumer product. As Ware points out on the bottom of the keepsake box, the missed opportunities and the sense of life wasted “can return to [the middle- and upper-class literary public] in somewhat damaged form during REM sleep.” Building Stories occurs to the protagonist in a dream but also not really, for the reader holds the book with her discarded (“damaged”) writing in her hand. This conundrum toys with the present and absent dichotomy that I outlined earlier—and now unfolds on the material level. “Browsing” draws attention to the simultaneity of absence and presence, what she always “had within her” and what she threw out. In this way, her dream about Building Stories pertains to her very own body of work, and equally the work of her very own body (i.e., her interaction with the book in the dream mimics the reader’s interaction, such as kneeling over the box). The book is now the prosthesis that has carried her through life throughout the years, making the present and the absent a part of her body. And “of course it’s mine”: the missing limb turns into a placeholder to acknowledge how loss and wanting in Building Stories “is a condition of life, yet it is never complete. That is, no matter who dies or what is removed, every loss leaves behind a remainder in Ware’s world.”34 Again, what is lost, remains—on bookshelves and in dreams.

To understand the implications of the intersections of “her leg” and “her

book,” David Mitchell and Sharon Snyder’s assertion is helpful to see how the inherent “vulnerability and variability of bodies serves literary narratives as a metonym for that which refuses to conform to the mind’s desire for order and rationality. Within this schema, disability acts as a metaphor and fleshly example of the body’s unruly resistance to the cultural desire to ‘enforce normalcy.’”35 Tying this to Building Stories’ overall chance-based material and narrative strategies, it speaks to both the experience of the body and of the book, a resisting toward and simultaneous catering toward notions of normalcy and unruliness. The phrasing “fleshly example of the body’s unruly resistance” strikes a chord: the book, too, is unruly, and to enforce normalcy in and on Building Stories might bring short-term, normate “order.” But, similarly to a reoccurring dream (which always comes back in a different guise), this order will be done away with the next time the reader engages with the box. Building Stories now asks to be approached within “dream logic”—the unconscious makes absent/forgotten/suppressed thoughts and feelings present again. Dreams relay, “retard” (to borrow from the daughter), and retrack affects and emotions. Chris Ware’s work acknowledges that normalcy might not be the same as ordinariness: the dazzlingly small steps

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unveil strategies of reading and being that might diverge from normalcy but are nonetheless ordinary. 111

Outlook: The Vulnerability of the Fragment Building Stories explores the layering of disability and normalcy in and through its idiosyncratic material. Simultaneously, it caters to conversations revolving around the body of books in the twenty-first century: this work renders both the disabled body of the book and the female body as non-normate and aberrant, and the reader’s engagement with the book (and the conflation between reader and protagonist in “Browsing”) brings forward alternate points of identification that non-normate bodies ask for and deserve. Here, it is noteworthy that Rosemarie Garland-Thomson explains how the non-normate status “feminizes all disabled figures”: books, bodies, readers.36 This helps gesture beyond the work Chris Ware performs within Building Stories to narrate and find material for disabled, non-normate identities. We can subsume that Ware’s work tangles with what seems unnavigable about life as one experiences it (to paraphrase Chris Mautner). This pertains particularly to the vulnerability of the female body and the daily (ordinary) experiences for women regarding sexual harassment or catcalling.

One of Chris Ware’s most recent New Yorker covers, “Golden Opportunity”

(March 5, 2018), was released six days before the 2018 Academy Awards. He depicts a blond woman in an office of a film producer. Awards line his shelf: an Academy Award, a Golden Globe. Her face is turned away, her arms are crossed, and her hands hold on to the strap of her purse. She turns her head to look at what the man is doing behind her. He draws the blinds. Outside his office window are skyscrapers and palm trees on roof decks. This is an interview, probably the casting for a role, but no word is being said; a camera is pointed at her, zooming in on her face. She is the last one on his list, and her name is marked with a little asterisk. We may wonder: whose golden opportunity is this? Will this be her big break? Or will she be broken? Is this yet another golden opportunity for yet another casting director to exploit a female body, subjugating her to a dirty game of power and humiliation?

This is a claustrophobic moment, to say the least. We know what will happen.

It is about the work the woman might feel obliged and pressured to perform—and that is just awful. Her body, at once vulnerable and exposed to the camera, and her work, being a professional actress, merge in the most uncomfortable way for her to feel obligated to engage in a sexual encounter. The casting director’s camera zooms in and segments the woman’s body. The woman, in turn, is rendered as a partial object (of desire). In light of recent revelations in and around the film industry in Hollywood, Ware depicts what is unfortunately an ordinary experience for many women. As Françoise Mouly explains, Ware’s “Golden Opportunity” nods “at a tumultuous year in the film industry, during which revelations of sexual

“Her Leg”

misconduct in Hollywood helped ignite the #MeToo movement.”37 “Her Leg” and “Her Face” remind us that we sometimes forget that behind every segment(ation) lies a body, behind every booklet a life, behind every leg a heart. Chris Ware 112

points out on the New Yorker website: “For too long . . . we have forgotten that, while actors like Clara Bow, Marilyn Monroe, or Lupita Nyong’o may be film stars, they are also human beings, subject to the totality of life.”38 And the totality of ordinary life, encapsulated within the segment, the slow or the unruly, begs to be respected and treated with care. And even if the woman in Building Stories remains unnamed, her face, her leg, her book encapsulate stories worth building—again and again, and all over again.

Notes 1. See Ariela Freedman, “Chris Ware’s Epiphanic Comics,” Partial Answers: Journal of Literature and the History of Ideas 13, no. 2 (2015): 342. Margaret Fink Berman’s article “Imagining an Idiosyncratic Belonging: Representing Disability in Chris Ware’s ‘Building Stories’” illuminates how Ware’s description “strangely elides disability as a characterization of the protagonist, relegating it to a deprivileged position in his account of the narrative.” She remarks that it is Ware’s style that “directs the reader’s eyes to a frank confrontation with her legs by depicting her in close-up shots from the knee down.” See Margaret Fink Berman, “Imagining an Idiosyncratic Belonging: Representing Disability in Chris Ware’s ‘Building Stories,’” in The Comics of Chris Ware—Drawing Is a Way of Thinking, ed. David M. Ball and Martha B. Kuhlman (Jackson: University Press of Mississippi, 2010), 191, 192. 2. Simon Willis, “Chris Ware: Everyday Genius,” Economist, September–October 2013, https://‌www‌.1843magazine‌.com‌/content ‌/features‌/simon‌willis/chris‌ware. 3. Simultaneously, Chris Ware continues to underline his own inadequacy to be a chronicler of modern life. I see a parallel between the protagonist’s failed aspirations of succeeding (i.e., attending art school, writing short stories and then throwing them out) and Chris Ware’s own self-fashioning of being “merely a cartoonist,” as well as other self-deprecating rhetoric he uses. David M. Ball suggests that we must understand the “larger literary historical treatment of celebrated failures, where success is viewed as antithetical to artistic aims, allows us to better understand the counterintuitive thrust of Chris Ware’s omnipresent rhetoric of failure. . . . Rather than senseless self-deprecation or morbid fascination, failure becomes a kind of artistic vision, part of a larger tradition of American authors’ persistent invocations of the rhetoric of failure

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to convey their highest aspirations for literary success.” David M. Ball, “Chris Ware’s Failures,” in Ball and Kuhlman, Comics of Chris Ware, 53. 4. A careful reader might be able to develop the narrative’s temporal linearity through the prostheses the protagonist wears. 5. Martha B. Kuhlman and David M. Ball, “Introduction: Chris Ware and the ‘Cult of Difficulty,’” in Ball and Kuhlman, Comics of Chris Ware, xxi. 6. Fink Berman, “Imagining an Idiosyncratic Belonging,” 192. 7. Ware in Chris Mautner, “‘I Hoped That the Book Would Just Be Fun’: A Brief Interview with Chris Ware,” Comics Journal, October 12, 2012, http://‌www‌.tcj‌.com‌/i‌hoped‌that‌the‌book ‌would‌just‌be‌fun‌a‌brief‌interview‌with‌chris‌ware (emphasis added). 8. Please note that Building Stories is not paginated, which makes accurate quoting from the graphic narrative difficult. 9. It might certainly be tempting to turn to Julia Kristeva’s ideas of abjection here. She explores how the abject relates to the materiality that can show you your own death, or the mortality of your own body, such as imagining your severed limb decomposing in a biohazard bag. Kristeva writes: “A wound with blood and pus, or the sickly, acrid smell of sweat, of decay, does not signify death. In the presence of signified death—a flat encephalograph, for instance—I would understand, react, or accept. No, as in true theater, without makeup or masks, refuse and corpses show me what I permanently thrust aside in order to live. These body fluids, this defilement, this shit are what life withstands, hardly and with difficulty, on the part of death. There, I am at the border of my condition as a living being.” Julia Kristeva, Powers of Horror: An Essay on Abjection (New York: Columbia University Press, 1982), 3. Notice, though, that the spread “Her Leg” is less about death and more about renewal,

giving the abject-absent the potential to make way for something new, such as feeding the flowers or consumer goods, like new shoes. 10. From the perspective of disability studies, Margaret Fink Berman explains: “The strange discrepancy between the striking presence of the protagonist’s short leg in the visual register of ‘Building Stories’ and the near absence of any acknowledgement of her disability in the textual register creates a perplexing interpretive situation” (“Imagining an Idiosyncratic Belonging,” 191). The contrary is true for this spread, for it is, literally, called “Her Leg.” 11. In her article “Becoming Aware of One’s Own Biased Attitude: The Observer’s Encounter with Disability in Chris Ware’s Acme Novelty Library no. 18,” Review of Disability Studies: An International Journal 10, nos. 3–4 (2014): 40–51, Nina Heindl approaches Ware’s comics from an art historical perspective. Similar to my argument, she turns to “Her Leg” to examine in what way the reading observer’s own prejudice is an important element toward the protagonist’s various prostheses. She argues that “the observer is deliberately denied a glimpse of the protagonist’s face, as she visually withdraws herself from the observer’s gaze, whereas she allows a deep look into her inner world, her frustration, on the textual level” (45). 12. Daniel Worden, “Loss as Life in Building Stories,” Comics Journal, October 12, 2012. http://‌www‌.tcj‌.com‌/loss‌as‌life‌in ‌building‌stories. 13. Christopher Irving and Seth Kushner, “Chris Ware on Building a Better Comic Book,” Graphic NYC, March 6, 2012, http://‌www‌ .nycgraphicnovelists‌.com‌/2012‌/03‌/chris‌ware‌on ‌building‌better‌comic‌.html. 14. Fink Berman, “Imagining an Idiosyncratic Belonging,” 192. 15. Ibid. 16. Todd A. Comer suggests a slightly different approach here; Ware uses “disability as a central metaphor to work through issues of power and interpretation, and even relation.” See Todd A. Comer, “The Hidden Architecture of Disability: Chris Ware’s Building Stories,” in Disability in Comic Books and Graphic Narratives, ed. Chris Foss, Jonathan W. Gray, and Zach Whalen (Basingstoke: Palgrave Macmillan, 2016), 53. 17. I borrow the term normate from Rosemarie Garland-Thomson’s seminal Extraordinary Bodies—Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997). She defines the term to designate the “social figure through which people can represent themselves as definitive human beings. Normate, then, is the constructed identity of those, who, by way of

the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them” (8). 18. Alexander Starre, Metamedia—American Book Fictions and Literary Print Culture After Digitization (Iowa City: University of Iowa Press, 2015), 23–24. 19. Kim O’Connor, “The Rumpus Review of Building Stories,” Rumpus, October 25, 2012, http://‌therumpus‌.net‌/2012‌/10‌/the‌rumpus‌re view‌of‌building‌stories. 20. Torsa Ghosal, “Books with Bodies: Narrative Progression in Chris Ware’s Building Stories,” StoryWorlds: A Journal of Narrative Studies 7, no. 1 (2015): 76. 21. Ware in Mautner, “I Hoped That the Book.” 22. Freedman, “Chris Ware’s Epiphanic Comics,” 342. 23. Sarah Birge, “No Life Lessons Here: Comics, Autism, and Empathetic Scholarship,” Disability Studies Quarterly: The First Journal in the Field of Disability Studies 30, no. 1 (2010): n.p. 24. Susan M. Squier, “So Long as They Grow Out of It: Comics, the Discourse of Developmental Normalcy, and Disability,” Journal of the Medical Humanities 29, no. 2 (2008): 71. 25. Fink Berman, “Imagining an Idiosyncratic Belonging,” 194. 26. Birge, “No Life Lessons Here.” 27. Ware has evoked parallels between the book and the body more than once in interviews. In a conversation with Jeet Heer for the Paris Review, for example, he explains that the book “has a face that can reveal itself or lie, it has a spine, it’s bigger on the inside than it is on the outside. The layering of panels and pages and chapters essentially makes a sculpture in space and in the memory of the reader. I also think there’s a certain poetic harmony between the physicality of a book and the ineffability of what it contains, like our bodies with our child selves buried alive inside, to say nothing of what we think of as consciousness somewhere in there as well.” Chris Ware, “The Art of Comics #2,” interview by Jeet Heer, Paris Review (Fall 2014), www‌.theparisreview‌.org‌ /interviews‌/6329‌/the‌art‌of‌comics‌no‌2‌chris‌ware. 28. Fink Berman, “Imagining an Idiosyncratic Belonging,” 195. 29. Georgiana Banita, “Chris Ware and the Pursuit of Slowness,” in Ball and Kuhlman, Comics of Chris Ware, 178. 30. Chris Ware’s interest in slow and unruly bodies comes to fore in Jimmy Corrigan. Jimmy broke his leg and uses crutches for the larger part of the story. His movements are tedious, awkward, and slow. 31. Banita, “Chris Ware and the Pursuit of Slowness,” 178.

“Her Leg”

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32. Isaac Cates, “Comics and the Grammar of Diagrams,” in Ball and Kuhlman, Comics of Chris Ware, 96. 33. Ware in Mautner, “I Hoped That the Book.” 34. Worden, “Loss as Life in Building Stories.” 35. David T. Mitchell and Sharon L. Snyder, Narrative Prosthesis: Disability and the

Dependencies of Discourse (2000; reprint, Ann Arbor: University of Michigan Press, 2011), 48. 36. Garland-Thomson, Extraordinary Bodies, 9. 37. Françoise Mouly, “Chris Ware’s ‘Golden Opportunity,’” New Yorker, February 26, 2018, https://‌www‌.newyorker‌.com‌/culture‌/cover s‌ tory‌/cover‌story‌2018‌03‌05. 38. Ware in ibid.

References Ball, David M. “Chris Ware’s Failures.” In Ball and Kuhlman, Comics of Chris Ware, 45–61. Ball, David M., and Martha B. Kuhlman, eds. The Comics of Chris Ware—Drawing Is a Way of Thinking. Jackson: University Press of Mississippi, 2010. Banita, Georgiana. “Chris Ware and the Pursuit of Slowness.” In Ball and Kuhlman, Comics of Chris Ware, 177–90. Birge, Sarah. “No Life Lessons Here: Comics, Autism, and Empathetic Scholarship.” Disability Studies Quarterly: The First Journal in the Field of Disability Studies 30, no. 1 (2010): n.p. Cates, Isaac. “Comics and the Grammar of Diagrams.” In Ball and Kuhlman, Comics of Chris Ware, 90–104. Comer, Todd A. “The Hidden Architecture of Disability: Chris Ware’s Building Stories.” In Disability in Comic Books and Graphic Narratives, edited by Chris Foss, Jonathan W. Gray, and Zach Whalen, 44–58. Basingstoke: Palgrave Macmillan, 2016. Fink Berman, Margaret. “Imagining an Idiosyncratic Belonging: Representing Disability in Chris Ware’s ‘Building Stories.’” In Ball and Kuhlman, Comics of Chris Ware, 191–205. Freedman, Ariela. “Chris Ware’s Epiphanic Comics.” Partial Answers: Journal of Literature and the History of Ideas 13, no. 2 (2015): 337–58. Garland-Thomson, Rosemarie. Extraordinary Bodies—Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 1997. Ghosal, Torsa. “Books with Bodies: Narrative Progression in Chris Ware’s Building Stories.” StoryWorlds: A Journal of Narrative Studies 7, no. 1 (2015): 75–99. Heindl, Nina. “Becoming Aware of One’s Own Biased Attitude: The Observer’s Encounter with Disability in Chris Ware’s Acme Novelty Library no. 18.” Review of Disability Studies: An International Journal 10, nos. 3–4 (2014): 40–51. Irving, Christopher, and Seth Kushner. “Chris Ware on Building a Better Comic Book.”

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Graphic NYC, March 6, 2012. http://‌www .nycgraphicnovelists‌.com‌/2012‌/03‌/chris tter‌.html. Kristeva, Julia. Powers of Horror: An Essay on Abjection. New York: Columbia University Press, 1982. Kuhlman, Martha B., and David M. Ball. “Introduction: Chris Ware and the ‘Cult of Difficulty.’” In Ball and Kuhlman, Comics of Chris Ware, ix–xxiii. Mautner, Chris. “‘I Hoped That the Book Would Just Be Fun’: A Brief Interview with Chris Ware.” Comics Journal, October 12, 2012. http://‌www.tcj‌.com‌/i. Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. 2000. Reprint, Ann Arbor: University of Michigan Press, 2011. Mouly, Françoise. “Chris Ware’s ‘Golden Opportunity.’” New Yorker, February 26, 2018. https://‌.newyorker‌.com‌/culture‌/cover‌ /cover‌‌‌. O’Connor, Kim. “The Rumpus Review of Building Stories.” Rumpus, October 25, 2012. http://‌therumpus.net‌/2012‌/10‌/the. Squier, Susan M. “So Long as They Grow Out of It: Comics, the Discourse of Developmental Normalcy, and Disability.” Journal of the Medical Humanities 29, no. 2 (2008): 71–88. Starre, Alexander. Metamedia—American Book Fictions and Literary Print Culture After Digitization. Iowa City: University of Iowa Press, 2015. Ware, Chris. “The Art of Comics #2.” Interview by Jeet Heer. Paris Review (Fall 2014). http://‌www.theparisreview‌.org‌/inter views‌/6329‌/the‌‌ware. ———. Building Stories. New York: Pantheon, 2012. Willis, Simon. “Chris Ware: Everyday Genius.” Economist, September–October 2013. https://‌www.1843magazine‌.com ‌/content‌/features‌/simon/chris. Worden, Daniel. “Loss as Life in Building Stories.” Comics Journal, October 12, 2012. http://‌www‌.tcj‌.com‌/loss‌in.

7

Crafting Psychiatric Contention Through Single-Panel Cartoons Helen Spandler

It would be overstating things to claim that comics are inherently challenging or subversive. Nevertheless, given the genre’s radical countercultural background, they are well placed to critique prevailing practices and institutions, especially medical and health care systems. As Ian Williams suggests, “There is something about the juxtaposition of drawings and handwritten text in comics that subverts the normal rules about what can be depicted, how it can be described, what one should think of that description and the subtle meanings and counter meanings that can be read into it.”1 In recent history, activists across a range of social movements have used countercultural creative practices, especially comics and cartoons, as a form of resistance.2 As a result, there have been recent calls for a more “critical” medical humanities project, one that moves beyond its usual focus—on the illness experience and the medical encounter—to specifically engage with the countercultural creative practices of activist movements.3

The history of the treatment and management of “madness” is complex and

fraught. Psychiatry, in particular, has emerged as a highly contested branch of medicine. Therefore, I use the term psychiatric contention4 to refer to the way that dominant ideas, practices, and policies in mental health have been challenged and critiqued by psychiatric service users, survivors and their allies, supporters, and social movements, including the Mad movement. This essay specifically explores the role of cartoons in this field of contestation. It relies on the idea that social movements have different “repertoires of contention” and suggests that cartoons are an increasingly important part of the growing repertoire of the psychiatric survivor movement.5 Therefore, I explore the role of cartoons in

contesting, critiquing, and challenging dominant medical and psychiatric framings of madness or mental illness. 116

This form of psychiatric contention is an important part of the emerging Mad

Studies project, which explicitly decenters professional psychiatric-centered knowledge about madness and produces alternative forms of mad-centered knowledge—that is, knowledge formed through the individual and collective experience of the “mad.”6 For this reason, I primarily use the nonmedical term madness in this essay (rather than mental illness or disorder) as it is the preferred term used by social movement activists in this field. I explore how cartoons have been used to actively challenge prevailing notions of normalcy, treatments, and systems.

Single-panel cartoons are one element within the broader comic genre. In

Understanding Comics, Scott McCloud argues that there is a long-standing relationship between comics and cartoons, but they are not the same thing.7 Cartoons are a style, while comics are a medium that uses that approach. Comics tend to be seen as a form of sequential art where a series of panels (usually consisting of graphics and text) constitute a story (or multiple stories). The single-panel cartoon can be distinguished from the multipaneled cartoon or comic strip/story in four main ways: (1) the cartoon is contained within a single visual panel, (2) there is less ongoing character development and ongoing story, and, most importantly, (3) it captures a message and (4) communicates it to the viewer in a simple, quick, and digestible manner.8

In the rest of this essay, I present some examples of single-panel cartoons

that have appeared in the U.K.-based magazine Asylum. Asylum is an independent, quarterly magazine that was first published in 1986 and is still produced today. It was inspired by the Italian Democratic Psychiatry movement and the emerging psychiatric survivor movement. It features critical perspectives on mental health, madness, and psychiatry by service users/survivors, their allies, and mental health professionals. It publishes material in various formats, including articles, stories, cartoons, and poems. In 2015, it produced four special issues on the theme of mental health and comics.9

This contribution is drawn from my research study exploring the first thirty

years of Asylum magazine (1986–2016).10 I have identified a selection of cartoons that articulate key themes of psychiatric contention during that period. Here I describe, contextualize, and analyze each cartoon’s contribution to a specific focus of psychiatric contention—notably electroconvulsive therapy, self-harm, psychiatric diagnosis, and recovery. I suggest that they encapsulate key psychiatric critiques and communicate them in a vivid, accessible, and often humorous way. Moreover, I make the case that they are a distinctive form of what Arthur Frank has called “survivorship as craft” and tentatively suggest that they are a unique style of contestation, created by psychiatric survivors.11

A few brief caveats are in order. The examples I give are by no means exhaus-

tive: either of the styles of cartoons or of the range of contested psychiatric

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themes illustrated though this medium. There are many other examples I could have used—within and beyond Asylum magazine. I have selected these examples because they illustrate how cartooning has been a powerful means of communicating key concerns that have animated the psychiatric survivor movement during recent years. In doing this, however, I am aware of the danger of ruining the cartoons’ magic by interpretation and analysis. This is not unlike the problem of analyzing jokes, which once explained, often cease to be funny. I am also aware of the sensitivity of interpreting the work of psychiatric survivors, who have often had negative experiences of psychiatric or psychological forms of interpretation and diagnosis.

For these reasons, I am cautious about using the term PathoGraphics as a way

of framing this work. Despite the alternative meanings intended by originators of this term, it is hard to separate “patho” from “pathology,” thus seeming to imply the importance of professional, medical, and pathologizing illness framings.12 Inadvertently, this may locate this work within certain frameworks, unintended by the artists. This concern is especially important to the psychiatric survivor movement, which has actively resisted practices of pathologization, medicalization, and co-option. For these reasons, I also purposefully focus my analysis on the cartoon’s sociopolitical contributions and consciously desist from any psychological interpretations of the cartoonists.

I hope this endeavor is worthwhile in the following ways: First, by including

examples of psychiatric contention within the growing graphic medicine field. Second, by helping to understand the contribution of comics and graphics to mental health survivor movements. Third, by recognizing, honoring, and appreciating the distinctive craft developed by survivors as a form of resistance and critique.

Dorothy Nissen Sibley’s ECT Cartoon This first cartoon was created by Dorothy Nissen Sibley, an ex–psychiatric patient from the United States. It concerns one of the most contested forms of psychiatric treatment in the history of psychiatry: electroconvulsive therapy (ECT). This practice remains highly controversial, in part because it is still used today: mostly as a “last resort” for people with severe “treatment-resistant” depression, especially older women. Indeed Asylum magazine has included regular critiques—and the very occasional defense—of ECT throughout its thirty years. For example, in 2014 it included a special issue—“Electroshock (ECT): Brain Damage as Therapy”—put together by an ECT survivor who campaigns against this treatment. Sibley’s cartoon was included in the second-ever issue of the magazine in 1986 (1.2:20), and it appeared again in 2010 (7.3:26) as well as in the aforementioned recent special ECT issue (2014: 23:3: 8).

Sibley’s cartoon succinctly illustrates some of the key criticisms of ECT. First,

that it is usually carried out on women by a male-dominated psychiatric system: in the image, the male doctor looms large over a female patient (there is little Crafting Psychiatric Contention

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7.1  Dorothy Nissen Sibley, “ECT,” Asylum 1, no. 2 (1986): 20, reprinted in 2010 and 2014.

suggestion of gender ambiguity). The image clearly suggests that the male doctor has significant power over the prone and helpless-looking female patient. The second main criticism of ECT is that it is harmful and the threat of ECT is used as a way to ensure compliance with treatment regimes. In the cartoon, the patient draws attention to the paradox of using something potentially harmful as a form of treatment. The cover image for the special ECT issue of Asylum shows a campaigner holding a “No forced shock” placard, with the accompanying text, “brain damage as therapy.” Sibley’s cartoon draws attention to the paternalism often used as a justification for this practice (the Dr. says, “I’m only doing this for your own good”). Sibley’s cartoon allows us to see this psychiatric critique very clearly, through the patient’s dark humor (expressed as “what would you do if you were trying to hurt me?”), clearly suggesting that the treatment is ultimately experienced as harmful, not helpful.

The third main criticism of ECT is that it is often given without the patient’s

fully informed consent and is therefore part of the regime of psychiatric “forced treatment.” This relates to a broader critique that psychiatry relies on compulsory treatment (and detention). Indeed, one of the consistent demands from the psychiatric survivor movement has been for an end to compulsion and, specifically, forced ECT. The cartoon implies that while the patient is not actively resisting the treatment, she is certainly not consenting, either. While the doctor’s paternalism is voiced, through speech marks, the patient’s critique is unspoken; it is confined in a thought bubble. Speech and thought bubbles are common techniques used in the comic medium to show what can be voiced and what has been silenced. It is possible to illustrate this power imbalance through written prose, but “showing” it arguably communicates this more clearly and vividly.

Historically, psychiatric patients’ have often been reluctant to articulate their

resistance, especially to their doctor, for fear of it being seen as further evidence of their “mental illness” or “lack of insight,” as this may trigger further unwanted treatments. Therefore, a common form of patient resistance has been to fake Pathographics

compliance with treatment regimens to avoid further hospitalizations and treatments that may be experienced as unnecessary or harmful.13 Sibley’s cartoon, in allowing viewers to see what is often left hidden and unspoken, potentially functions as a bridge between what James C. Scott refers to as “hidden” and more “public” acts of resistance.14 In summary, Sibley uses simple cartooning methods to illustrate key themes of psychiatric critique and resistance. The power of this cartoon to express these themes is evidenced by its repeat appearances in Asylum.

Tamsin Walker’s Self-Harm Cartoons All four single-panel cartoons used in this section were created by Tamsin Walker, a U.K.-based illustrator who has personal experience with self-harm and is a psychiatric survivor activist.15 They all appeared in a special issue of Asylum on self-harm (entitled “Minimising Harm, Maximising Hope”) as stand-alone images alongside related articles on the subject (20.2 [2013]). Therefore, they all neatly encapsulate another key theme of psychiatric contention: the understanding and treatment of self-harm. As we shall see, they also, like Sibley’s ECT cartoon, highlight broader themes of contention.

Walker’s first cartoon16 neatly illustrates one of the key criticisms of the

treatment and management of self-harm—that it often misses the point of the value of self-harm to the person (fig. 7.2). Historically, self-harm has often been misunderstood and misinterpreted as “parasuicide,” and self-harmers seen as attention-seeking and manipulative. In the late 1980s and early 1990s, an active self-harm movement began to emerge in the United Kingdom. Initiated by an alliance of feminists and psychiatric survivors, activists highlighted the way that people (usually women) who self-harmed were negatively treated by psychiatry, and they campaigned for better understanding, support, and services.17

In parallel, survivor activists attempted to create alternative understandings

of self-harm as a “silent scream,” a coping strategy, and a reasonable response

7.2  Tamsin Walker, “How Is Your Self-Harm Going?” Asylum 20, no. 2 (2013): 20. Courtesy of Tamsin Walker.

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to intolerable situations (e.g., abuse and oppression). Thus while professionals might be understandably “concerned” about a person self-harming, it is often experienced as having positive meaning and functions in a person’s life. There120

fore, rather than trying to stop a person self-harming, the self-harm movement has focused on supporting people to understand their self-harm and, if they do continue to self-harm, to do so more safely.18 Walker’s first cartoon neatly illustrates this theme through reversal and humor.

Presumably, a more “appropriate” answer to a standard question about one’s

self-harming behavior (“So how is your self-harm going?”) would be to say either that it is “bad” in some way or, more positively, that it has decreased or even stopped. If the former, the person would be seeking help from the mental health professional, and if the latter, the person might even credit services for helping achieve this outcome. Instead, however, the woman smiles and offers a surprising and unsettling response—“Good thanks!” As self-harm is usually seen as necessarily damaging and dangerous, this cartoon neatly reverses our expectations and subverts our perceptions by suggesting that self-harm might be a valued activity for some people.

Walker’s second cartoon19 implicitly draws on this knowledge—which is

well known to self-harm activists—to turn the tables on psychiatry and mental health professionals (fig. 7.3). This cartoon cleverly questions the motivations of the mental health professional. It uses the technique of power reversal that is common to many critiques of psychiatry. Using satire, it attempts to make the case that the patient may actually be more reasonable or rational than the professional. When the person (presumably a self-harmer) says to the mental health system (“Dr.”), “I’m concerned about the negative labeling you have been engaging in,” they are mocking the professional who expresses “concern” about a person’s self-harming behavior. Here, however, the problem is presented as the negative labeling engaged in by the mental health professional, not the selfharm, per se. This “labeling behavior” is seen to have a negative impact on the patient, presumably by misunderstanding and labeling them as manipulative, attention-seeking, and so on.

Here, in an unexpected twist, the professional owns up to the function of their

negative behavior: it “makes me feel less anxious.” The cartoon also prompts us to consider how unusual it is for professionals to do this. Indeed, one of the exercises that self-harm activists initiated was to encourage professionals to consider their emotional reactions to self-harm and the ways they may self-harm in their own lives—for example, by over-exercising or over-working—emphasizing the “continuum of self-harm.20 Therefore, this cartoon shows it is not just self-harmers who use seemingly damaging activities to cope with their distress. Here, however, the negative activity is the labeling of other people’s distress. Therefore, the cartoon makes a broader critical point about how mental health services engage in ‘othering’ practices—defining, categorizing, and pathologizing people’s reactions to distress.

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7.3  Tamsin Walker, “Negative Labelling Behaviour,” Asylum 20, no. 2 (2013): 21. Courtesy of Tamsin Walker. 7.4  Tamsin Walker, “Diagnosis Dice,” Asylum 20, no. 2 (2013): 27. Courtesy of Tamsin Walker.



This “negative labeling” refers to particular stigmatizing diagnoses that many

self-harmers, especially women, often receive. As such, the cartoon also alludes to another key theme of psychiatric contention—the practice of psychiatric diagnosis. While diagnosis is supposedly designed to benefit the client, this cartoon suggests that it actually benefits the mental health professional, not the client, by relieving their anxiety. This effectively mirrors, in reverse, the experience of the survivor who uses self-harm to alleviate difficult emotions. Intriguingly, in doing so, it also opens the possibility of seeing patients and professionals sharing a similar struggle with dealing with their anxiety and thus reveals a potentially shared humanity. In addition, it also breaks down the artificial boundary between the supposedly sane professional and the mad patient. The practice of diagnosis as another theme of psychiatric contention is addressed directly in Walker’s next cartoon.21 Crafting Psychiatric Contention



Psychiatric diagnosis has come under sustained criticism by survivors, mental

health activists, and academics. Critics frequently challenge diagnosis as unscientific, arbitrary, stigmatizing, and unhelpful at best and damaging at worst. There 122

have been campaigns to abolish psychiatric diagnosis in general22 and specifically stigmatizing diagnoses such as schizophrenia and borderline personality disorder (BPD).23 For example, another special guest-edited issue of Asylum was entirely devoted to critiquing BPD (the title of the issue was “BPD: Bullshit Psychiatric Diagnosis,” Asylum 14.3 [2004]). BPD is the most common diagnosis given to women who self-harm, but they often end up with an array of psychiatric diagnoses, including complex post-traumatic stress disorder and attachment disorder (also depicted on the cartoon dice). The diagnosis of BPD has come under much criticism for being used to pathologize women’s ways of coping with abuse, oppression, and adversity—which are seen as “personality” problems rather than as survival strategies. Critics have argued that psychiatric diagnoses are not evidence based but are historically, culturally, and professionally based value judgments. Moreover, psychiatric survivors often complain about the range of diagnoses they have received over the years in the mental health system, which relate as much to factors such as which psychiatrist they saw as to their underlying distress. Walker’s image shows the often arbitrary nature of diagnosis—such as being dependent on a roll of the dice.

The last cartoon24 in this section vividly links the politics of self-harm to

another key theme of psychiatric contention: the underfunding of mental health support services, especially under recent austerity policies (fig. 7.5). Situated within a context of neoliberal austerity measures, on one level this message is very simple. “Stop the cuts” is a common demand of activists campaigning against reductions in support and services. But Walker’s cartoon neatly and implicitly links this to the “stop self-harming” demand from services. As we have seen, the insistence on patients stopping self-harming, despite the range of functions it may have for them, has been a key criticism leveled at psychiatric, psychological, and therapeutic practices. For example, mental health services have been criticized for issuing “no self-harm” contracts to clients, which meant if they self-harmed they would be denied support for a certain period of time. Indeed, people who self-harm having adequate support, without an insistence that they give up their coping strategy, has been a key demand of self-harm activists, who have advocated alternative harm-minimization strategies.

Self-cutting is probably the most common form of self-harm, or at least the

one that has been most well articulated as a coping strategy. In the cartoon, the self-harmer is situated as demanding “no cuts”—presumably to services—while they may continue to self-harm (suggested by visible cuts to their arm). Here, again, the focus of the problem is not the self-harmer, but neither is it the mental health professional or services—which are being defended—it is the broader political context (cuts to service provision).

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7.5  Tamsin Walker, “Stop the

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Cuts,” Asylum 20, no. 2 (2013): 26. Courtesy of Tamsin Walker.



Walker’s images use simple but effective cartooning methods, such as

abstracted figures, speech bubbles, and minimal accompanying text to convey a key message. By using reversal, subversion, and humor, they illustrate key issues in the understanding and treatment of self-harm. Walker certainly wasn’t the first person to develop this style of contention in relation to self-harm. In fact, she explicitly drew on traditions developed by earlier survivor activists in the field. For example, one of the foundational texts of the growing self-harm movement, Self-Harm: Perspectives from Personal Experience,25 included a series of single-panel cartoons called professional thought disorder alongside powerful written testimonies of self-harm survivors. The cartoons reverse what is usually considered the “problem,” away from the self-harmer and onto the professional who is supposed to be helping, through exaggeration and irony.26 Louise Pembroke’s book is freely available online,27 and the notion of professional thought disorder has become a common theme within the psychiatric survivor movement (e.g., it is referenced in subsequent issues of Asylum). As “thought disorder” is deemed a common symptom of mental illness, this idea is used to highlight the irrationality of the mental health profession, a system characterized as “thought disordered,” not the individual psychiatric patient. Walker’s cartoons implicitly draw on this notion and further illustrates it. Like Sibley’s ECT cartoon, they also address broader themes of psychiatric contention (e.g., diagnosis and lack of funding for mental health support). Moreover, the cartoons, despite their seeming simplicity, convey a sophisticated, multilayered critique.

Crafting Psychiatric Contention

Recovery in the Bin’s UnRecovery Star The next image explored here isn’t, strictly speaking, a cartoon. It lacks obvious 124

cartoonlike qualities, such as abstracted figures and speech bubbles. However, as we shall see, it shares certain characteristics with cartoons, notably its use of subversion and mockery. I include it here because it illustrates a different “style” of contention (“spoofing”). In addition, while the other cartoons in this chapter were inspired by collectively produced survivor knowledge, each was drawn by a single, identifiable individual. In contrast, this image was collectively produced by a group of psychiatric survivors.28 It was created to parody a well-known diagram used in service provision and training in the United Kingdom—the Mental Health Recovery Star. Although it is a stand-alone image, it requires specific knowledge of the image it parodies. Therefore, I include both images here.

The past decade has seen the rise of “recovery”-orientated policy in rela-

tion to mental health care. This was initially viewed by many as a progressive and optimistic approach that would enable service users to live healthy, meaningful, and productive lives, regardless of their mental health diagnoses, rather than being “written off” as psychiatric cases. However, it has increasingly been criticized, partly due to the context within which it has been implemented.29 For example, in the current context of austerity, recovery has often been used as an excuse not to provide people with disability benefits, support, or services. As a result, it has become a key contemporary theme of psychiatric contention. In the United Kingdom, a number of service users, survivors, and their allies formed a campaigning group, Recovery in the Bin (RitB), explicitly to critique the neoliberal recovery model.

Activists involved in RitB were especially critical of various recovery measures

and indicators. The Recovery Star is one example commonly used in services across the United Kingdom to assess a person’s progress. While its domains include employment and relationships, many of the indicators have been overly individualized, placing the responsibility for recovery onto the individuals themselves and ignoring conditions that might prevent this. For example, while employment is often seen as an indicator of successful recovery, poor employment conditions are rarely perceived as a barrier or problem. Therefore, the alternative “UnRecovery Star ” was designed to redress that balance.

Unlike the previous cartoons discussed in this essay, the meaning and purpose

of the UnRecovery Star has been clearly articulated by its creators, on the RitB website.30 Therefore, rather than unpack the underlying “message” of the image myself, I will just refer to their explication. The UnRecovery Star was specifically designed as a social justice tool to highlight social inequalities and unmet needs (e.g., housing and welfare). In other words, it was developed to “highlight the reasons why we go Mad, but also what can hinder our ‘recovery’ and maintain our distress.” Given the increasing pressure on service users to “recover” (i.e., to get back to work and not rely on disability benefits or ongoing support), the

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7.6  The Recovery Star by the U.K. Mental Health Providers Forum.

7.7  “The UnRecovery Star,” Recovery in the Bin, https://‌recoveryinthebin‌.org‌/unrecovery‌‑star‌‑2.

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UnRecovery Star is used to suggest that “some of us will never feel ‘recovered’ due to the social and economic conditions we experience.” More generally, it is argued that “we need social and political solutions for social problems, which 126

the UnRecovery Star simply and clearly identifies” (emphasis added).

The UnRecovery Star is also interesting because it uses a technique different

from those used in the cartoons examined earlier: the practice of “spoofing” (i.e., imitating something while mimicking, mocking, or exaggerating its characteristic features for comic effect). In the UnRecovery Star , spoofing is achieved by replacing the recovery outcomes in the first star with key social determinants such as poverty, sexism, racism, homophobia/transphobia, and inequality. This shifts the focus from the individual onto society and suggests that key barriers to recovery are primarily social in origin. Spoofing is a common “style” of contention used by other radical protest campaigns and social movements as a form of critique and resistance. Usually, spoofing protests have targeted media advertisements. Using practices similar to graffiti art, activists deface existing adverts, alerting viewers to their underlying message, or create new adverts, which explicitly parody existing ones. This practice was made popular by organizations such as Adbusters in the United States.31 The UnRecovery Star shows us that psychiatric survivor activists have taken up these methods, too. Indeed, Asylum included a series of spoof adverts in its special Mad in Toronto issue.32 These targeted government- and psychiatry-endorsed anti-stigma campaigns that are seen to privilege individualized and medicalized understandings of mental health. Therefore, these spoofing ads, like the other single-panel cartoons discussed here, function as a form of psychiatric contention. In a similar way, the UnRecovery Star uses parody and humor in its mockery of the original recovery tool.

Psychiatric Survivorship as Craft and Conviction The previous section explored how single-panel cartoons illustrate key themes of psychiatric contestation that have animated the psychiatric survivor movement over recent years. In this final section, I tentatively suggest that psychiatric survivors have developed a distinctive “style” of resistance and critique that, in turn, forms part of a growing repertoire of psychiatric contention. I explicitly draw on Arthur Frank’s notion of “survivorship,” which refers to the way that some people who have experienced illness and/or medical treatment have consciously transformed their own suffering into public acts of witness and testimony.33 In other words, they have “crafted” their experiences in a way that displays an ethicalpolitical responsibility to self and others. When Frank initially articulated this idea, he wasn’t explicitly referring to “craft” in the sense of art or graphics.34 He referred to the ethics of survivorship as a form of craft activity because, like craftworkers, they have a self-consciousness of purpose.

I make the case that by using comic and cartooning methods, survivors

have crafted a distinctive style of psychiatric contention. In the examples given

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previously, the cartoons use humor, parody, and subversion to consciously communicate their “critical message” in a quick, straightforward, and direct manner. These images are crafted, at least in part, to evoke a shift in consciousness or recognition—about mental health and psychiatry. Indeed, Sheree Bradford-Lee argues that in single-panel cartoons, the “message is the star.”35 Cartoons are perhaps uniquely able to convey their message by what Scott McCloud calls “amplification through simplification.”36 Rather than “dumbing down” the message, cartoons amplify it.37 By stripping down an image to its essentials, they not so much eliminate detail as focus on, and highlight, specific details.

Single-panel cartoons have been used to challenge accepted or prevailing atti-

tudes and perspectives within psychiatric practice. Moreover, they can present alternative perspectives, outside the dominant biomedical framing of “mental illness.” For example, in their own way, the cartoons used in this essay offer up alternative explanations for such things as: why people are given ECT, why professionals use diagnosis, or why individuals might not “recover.” In addition, they offer alternative attributions of blame and responsibility—identifying the “problem” as not the designated mad person but the mental health professional, the mental health system, or wider society. They also subvert epistemological privilege, identifying the mad person as the source of knowledge and understanding, thus decentering the role of mental health professionals. Crucially, a cartoon can achieve this without the use of inelegant academic language. This is important in a discipline where critical ideas are often overly intellectualized and inaccessible.

A cartoon can cut through complexity and present contentious ideas in a

vivid, direct, and accessible way. This makes its message visible and potentially more digestible. Therefore, it represents a form of critical pedagogy (or consciousness-raising) that assumes people learn when their experience and emotions are engaged, rather than just their intellect. By engaging other ways of knowing, cartoons can bypass our “normal” and accepted ways of thinking and help us see things in a different way. In discussing the power of graphic illness memoirs, Frank argues that graphics give prose an “emotional jolt” and helps “bear witness” to suffering.38 Pictures provoke our imagination, and the accompanying prose helps to articulate and make sense of what the image provokes. Images “linger” in the reader’s imagination. While words and phrases linger too, images “linger differently.”39

Multipaneled cartoons and graphic memoirs can also challenge dominant

knowledge and understandings about mental health. Some notable examples of this genre in the United Kingdom include cartoons by Louise Pembroke, Dolly Sen, and Rachel Rowan-Olive.40 Some of these are made up of single-panel cartoons that have been turned into a series, often using the same key protagonist, who is usually the illustrator / mad person / survivor. It has been suggested that singlepanel cartoons are more clearly able to convey their message because they are less “muddied” or “interrupted” by storyline, character, or plot development.41 Crafting Psychiatric Contention

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Perhaps it is precisely because the focus of the single-panel cartoon isn’t about the character’s “illness story,” which enables it to offer a more structural critique. 128

However, this strength of the single-panel cartoon may also be its weak-

ness. “Amplification through simplification” inevitably risks erasing complexity. Of course, this is not unlike many other methods used to convey a political message, such as slogans, where messages are oversimplified to garner wider support for the cause. This tendency is especially risky in the fields of mental health, madness, and psychiatry. For all its endless controversies, the contestation of psychiatry is often rife with simplifications and polarized views. These can be distinctly unhelpful in building the alliances necessary to create positive change in mental health services.42 For example, cartoons used to contest psychiatry may seemingly pit the patient against the professional, as if they are necessarily oppositional positions. The ECT cartoon, for example, may imply that all patients experience ECT as damaging, whereas views are divided, and some individuals report some positive benefits.43 Moreover, the tendency to reverse the focus of “the problem” onto psychiatry and mental health systems doesn’t necessarily challenge the underlying binary logic. For example, the implication is that it is “really” the professional who is mad or irrational, not the patient. This arguably keeps the pathologizing binary logic of psychiatry intact—that is, by retaining a division between the “mad” and the “sane.”

Notwithstanding these potential pitfalls, I have argued that single-panel

cartoons are able to convey important critical messages while also retaining a degree of complexity. Graphic memoirs can potentially and uniquely depict the complexity of illness, suffering, and treatments, as the format doesn’t require an overarching written narrative. For example, Frank suggests that Allie Brosh’s Hyperbole and a Half is one of the clearest articulations of what he calls a chaos story.44 Chaos is perhaps more “like” the actual experience of illness, especially mental illness, than the prevailing restitution narrative that tends to be preferred by the medical profession (which assumes medical intervention is benign and ultimately helpful). If graphic memoirs can challenge this dominant narrative by vividly portraying the patient’s actual experience, perhaps the single-panel cartoon is able to overtly politicize this challenge, which often remains implicit in the graphic memoir. For example, mental health recovery policy is a variant of the restitution narrative that the UnRecovery Star explicitly rejects. Moreover, Sibley’s ECT cartoon illustrates that medical intervention is not necessarily benign or helpful. In addition, Walker’s cartoons not only subvert dominant understandings of self-harm but also provide insight into the motivations of the mental health professional. This may promote understanding rather than merely reverse blame—for example, by highlighting how the professional may be using diagnosis to “relieve their anxiety.”

This style of psychiatric survivorship is an important part of the emerging Mad

Studies movement. One of the aims of this movement is to “flip the microscope” and “reverse the script” by studying the practices and discourses of normalcy

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and seemingly normal/sane people rather than those deemed abnormal/insane by others.45 One of its key tenets is challenging the privileging of rationality and reason as key arbiters of truth and understanding. Cartoons are ideally suited to this task. They can bypass rationality and reason to embrace alternative ways of viewing the world. For example, one of the key components of the cartooning style is that it presents critique without having to provide evidence, logic, or argument. Instead, it appeals to the collective experiential knowledge of the psychiatric survivor movement as well as well-rehearsed critiques of psychiatry. Instead of evidence and argument, it uses emotion, humor, and even “common sense.” For example, cartoons often appeal to certain cultural stereotypes, such as the psychiatrist being “madder than their patients,” concerns about psychiatry “locking people up,” and sensibilities about giving people “electric shocks.” Notwithstanding concerns about oversimplification and stereotyping, they can express alternative perspectives that people can relate to and even mobilize around.

Cartoons as Protest Companions The ability of single-panel cartoons to convey a central idea is an important part of their appeal, both to individuals and—through their role in circulating challenging ideas—to a wider audience. Moreover, while reading multipaneled comics, including graphic memoirs, tends to be a solitary activity, single-panel cartoons lend themselves to a more collectivized reading. Appearing in newspapers and magazines (e.g., Asylum), they are more readily talked about and shared. For example, single images can be easily reproduced and shared across social media forums, which have become an increasingly important method of communication for activists. The UnRecovery Star has functioned in this way. Mental health activists have circulated and explicitly used it as a social justice tool. Therefore, single-panel cartoons can be used not only to help individuals “hold their own” in difficult encounters with professionals but might even be used as protest “companions” to social movements, similar to “companion species” or “companion stories.” 46

In this context, I want to refer to another cartoon that has functioned as a

companion image in recent years. Dolly Sen, another U.K.-based psychiatric survivor and artist, created the following image in 2016 (fig. 7.8). The image was “inspired by her belief that madness comes from a broken heart rather than a broken mind, and the fear that psychiatry has about moving away from the broken brain hypothesis for explaining mental pain.”47 The image was used as the emblem for the second Mad Studies conference in the United Kingdom in 2016 and featured on the front cover of the special issue of Asylum magazine entitled “Mad Studies Comes of Age” (Asylum 23.3). In addition, because of its popularity, especially among psychiatric survivors, it was used on pin badges given to delegates at Asylum’s thirty-year anniversary conference in 2017. Participants at these Crafting Psychiatric Contention

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7.8  Dolly Sen, “Pathologise

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This,” Asylum 23, no. 3 (2016): front cover. Courtesy of Dolly Sen.

events reported wearing this badge afterward, in meetings and consultations with mental health professionals. Wearing this symbol of cheeky subversion— either visibly or in a more hidden way—seemed to offer a critical companionship to survivors and workers facing challenging psychiatric situations and encounters. For example, a mental health worker trainee wrote: “I picked up a small pin badge with a heart and ‘pathologise this’ on it—this has become a sort of anchor for me and signifies and solidifies my way of being in the world.” This quote beautifully illustrates how this image might be a “good companion” to activists. Perhaps, like Donna Haraway’s companion species and Frank’s companion stories, companion images have a kind of agency and coexist with humans; they shape one another, take care of one another, and enable each other to be.48

It is worth noting here that most of the single-panel cartoons I identified as

examples of psychiatric contention during my research were created by women. In addition, the recent proliferation of zines and graphic memoirs have often been initiated within alternative countercultural communities (queer, trans, mad, autistic) and by other critical outsiders. Moreover, they often reflect issues relating to mental health, gender, sexuality, and normalcy, in both their content and style. This may be because cartoons are able to “express the thoughts that we’re afraid might label us as odd or strange, and even help to validate ourselves by normalising our behaviours.”49 Perhaps cartoons are a particular style of resistance more likely to be adopted by certain marginalized, silenced, and oppressed people. Having said that, it is worth noting that the cartoons I’ve cited here were created by, and depict, white protagonists. Therefore, this requires further exploration.

The tendency to use cartooning as critique may be related to humor histor-

ically being used as a form of covert resistance by subordinated and oppressed Pathographics

people.50 There may be several reasons for this. For example, it enables individuals to resist in less direct, confrontational, and thereby safer ways. This is important in medical, and especially psychiatric, encounters where overt patient resistance may have severe consequences for the individual. Humor is often a way of communicating dissent: it can be hidden from those in power but expressed and shared among the oppressed.51 Cartoons, therefore, are a potentially effective way of making these hidden critiques more public and visible. In other words, borrowing a phrase from Audre Lorde, perhaps such cartoons help make survivors “available to themselves,” and this, in turn, makes their critique available to others. Indeed, the increasing use of this medium in recent years might be related to the reenergized women’s movement, symbolized by the popular post-Trump #MeToo campaign and the growing confidence of other marginalized communities in getting their voices heard. Given that autobiographic comics sprung from the radical 1960s and 1970s counterculture, in this newly politicized era perhaps it is not surprising to see a resurgence in this medium.

In conclusion, I have made a case for single-panel cartoons as a distinctive

style of critique developed by psychiatric survivors that forms part of a growing repertoire of psychiatric contention within radical mental health movements. Survivor activists are drawing on creative traditions of art, subversion, and humor to create new styles of psychiatric contention suitable for the social media age. Mindful of the role cartoons can play in satirizing contemporary politics, perhaps they are a good barometer, not only of key themes of psychiatric contention but of other key foci of resistance and critique.

Notes 1. Ian C. M. Williams, “Graphic Medicine: Comics as Medical Narrative,” Journal of Medical Humanities 38 (2012): 25. 2. See, for example, The Nib, https://‌thenib ‌.com. 3. W. Callard Viney and A. F. Woods, “Critical Medical Humanities: Embracing Entanglement, Taking Risks,” British Medical Journal 41 (2015): 2–7; Sarah Atkinson et al., “‘The Medical’ and ‘Health’ in a Critical Medical Humanities,” Journal of Medical Humanities 36 (2015): 71–81. 4. I use the term psychiatry as a shorthand to refer to the range of professions involved in mental health treatments and services. This may include nursing, social work, psychology, psychotherapy, and others, as well as psychiatry. While they are different (and somewhat competing) professions, psychiatry is presently the dominant way of framing statutory treatments and services. While not strictly accurate, it feels preferable to using the more cumbersome and often-used academic term psy professions.

5. Nick Crossley, Contesting Psychiatry: Social Movements in Mental Health (London: Routledge, 2006). 6. Brenda LeFrancois, R. Menzies, and Geoffrey Reaume, eds., Mad Matters: A Critical Reader in Canadian Mad Studies (Toronto: Canadian Scholars’ Press, 2013). 7. Scott McCloud, Understanding Comics: The Invisible Art (New York: First Harper Perennial, 1994). 8. Sheree Bradford-Lee, “The Normalising Power of the Single Panel Cartoon,” Asylum 22, no. 1 (2015): 18–20. 9. Available on the Asylum magazine website: https://‌asylummagazine‌.org. 10. The research was funded by the Wellcome Trust (Bursary Award no. 208269/Z/17/Z).: 11. Arthur Frank, “Survivorship as Craft and Conviction,” Qualitative Health Research 13, no. 2 (2003): 247–55. 12. Arthur W. Frank, “When Bodies Need Stories in Pictures,” in The Routledge History of Disease, ed. M. Jackson (London: Routledge, 2017), 565–80.

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13. China Mills, “Sly Normality: Between Quiescence and Revolt,” in Psychiatry Disrupted: Theorizing Resistance and Crafting the (R)evolution, ed. B. Burstow, S. Diamond, and B. LeFrancois, 208–24 (Montreal: McGill University Press, 2014). 14. James C. Scott, Domination and the Arts of Resistance: Hidden Transcripts (New Haven: Yale University Press, 1992). 15. Walker has subsequently illustrated children books, including a book for children about self-harm and a graphic memoir about surviving abuse; see Clare Shaw and Tamsin Walker, Ottis Doesn’t Scratch (Monmouth, U.K.: PCCS Books, 2015), and T. O. Walker, Not My Shame (London: Singing Dragon, 2016), respectively. 16. This appeared in Asylum 20, no. 2 (2013): 20. 17. Mark Cresswell, “Self-Harm ‘Survivors’ and Psychiatry in England, 1988–1996,” Social Theory and Health 3, no. 4 (2005): 259–85. 18. Eleanor Dace et al., The Hurt Yourself Less Workbook (London: National Self-Harm Network, 1998). 19. This appeared in Asylum 20, no. 2 (2013): 21. 20. H. Spandler, “Challenges and Opportunities for Compassionate Mental Health Care,” in The Moral Psychology of Compassion, ed. C. Price and J. Caouette (Lanham, Md.: Rowman and Littlefield, 2018) 129–44. 21. This appeared in Asylum 20, no. 2 (2013): 27. 22. Sami Timimi, “No More Psychiatric Labels,” Asylum 19, no. 1 (2011), http://‌asylum magazine‌.org‌/2012‌/05‌/no‌‑more‌‑psychiatric‌ ‑labels. 23. H. Spandler, “The Problem of Psychiatric Diagnosis,” in Approved Mental Health Practice: Essential Themes for Students and Practitioners, ed. S. Matthews, P. O’Hare, and J. Hemmington (London: Palgrave Macmillan, 2014), 66–85. 24. This appeared in Asylum 20, no. 2 (2013): 26. 25. Louise Pembroke, Self-Harm: Perspectives from Personal Experience (London: Survivors Speak Out, 1994). 26. Jane Kilby, “Carved in Skin: Bearing Witness to Self-Harm,” in Thinking Through the Skin, ed. S. Ahmen and J. Stacey (London: Routledge, 2001), 124–42. 27. See http://‌www‌.studymore‌.org‌.uk‌/shp fpe‌.pdf. 28. The UnRecovery Star appeared in Asylum 23, no. 3 (2016): 18. 29. Lucy Costa et al., “‘Recovering Our Stories’: A Small Act of Resistance,” Studies in Social Justice 6, no. 1 (2012): 85–101, and David J. Harper and E. Speed, “Uncovering Recovery:

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The Resistible Rise of Recovery and Resilience,” Studies in Social Justice 6, no. 1 (2012): 9–25. 30. See https://‌recoveryinthebin‌.org‌/unre covery‌‑star‌‑2. 31. See https://‌www‌.adbusters‌.org‌/spoof‌ ‑ads. 32. Asylum 20, no. 4 (2013): 22–25. 33. Frank, “Survivorship as Craft and Conviction.” 34. Frank has more recently explored graphic illness memoirs in “When Bodies Need Stories in Pictures.” 35. Bradford-Lee, “Normalising Power.” 36. McCloud, Understanding Comics, 30. 37. Joseph de Lappe, “‘All I Needed Was to Get It Out of My System’: The Early Use of Comics for Mental Health Therapy in America.” Asylum 22, no. 1 (2015): 8–9. 38. Frank, “When Bodies Need Stories in Pictures.” 39. Ibid. 40. Pembroke, Self-Harm; Brick (John Stuart Clark), Depresso; or, How I Learned to Stop Worrying and Embrace Being Bonkers! (London: Knockabout Limited, 2010); Dolly Sen, DSM69: Dolly Sen’s Manual of Psychiatric Disorder (London: Eleusinian Press, 2017); Rachel Rowan-Olive, Goldilocks and the Three Therapists: A Thinly Veiled Autobiography, Shit Stick Figure Books Book 1 (2017). 41. Sheree Bradford-Lee, “Normalising Power.” 42. M. McKeown, “Alliances in Action: Opportunities and Threats to Solidarity Between Workers and Service Users in Health and Social Care Disputes,” Social Theory and Health 7 (2009): 148–69, and M. McKeown and H. Spandler, “Solidarity Across Difference: Organising for Democratic Alliances,” in Madness, Distress and the Politics of Disablement, ed. H. Spandler, J. Anderson, and B. Sapey (Bristol: Policy Press, 2015), 271–86. 43. Diana Rose et al., “Patients’ Perspectives on Electroconvulsive Therapy: Systematic Review,” British Medical Journal 326 (2003): 1363, and Jonathan Sadowsky, Electroconvulsive Therapy in America: The Anatomy of a Medical Controversy (London: Routledge, 2017). 44. Allie Brosh, Hyperbole and a Half (London: Square Peg, 2013). 45. Lucy Costa, “Mad Studies—What It Is and Why You Should Care,” Mad Studies Network, October 15, 2014, https://‌madstudies2014‌ .wordpress‌.com‌/2014‌/10‌/15‌/mad‌‑studies‌‑what‌ ‑it‌‑is‌‑and‌‑why‌‑you‌‑should‌‑care‌‑2‌/#more‌‑127. 46. Arthur W. Frank, Letting Stories Breathe: A Socio-narratology (Chicago: University of Chicago Press, 2010); Donna Haraway, The Companion Species Manifesto: Dogs, People, and

Significant Otherness (Chicago: Prickly Paradigm Press, 2003). 47. Asylum 23, no. 4 (2016): 4. 48. Frank, Letting Stories Breathe. 49. Bradford-Lee, “Normalising Power,” 19.

50. It is important to acknowledge that cartoons and humor have also historically been used against oppressed people as well as by them. 51. Scott, Domination and the Arts of Resistance.

References Atkinson, Sarah, Bethan Evans, Angela Woods, and Robin Kearns. “‘The Medical’ and ‘Health’ in a Critical Medical Humanities.” Journal of Medical Humanities 36 (2015): 71–81. Bradford-Lee, Sheree. “The Normalising Power of the Single Panel Cartoon.” Asylum 22, no. 1 (2015): 18–20. Brick (John Stuart Clark). Depresso; or, How I Learned to Stop Worrying and Embrace Being Bonkers! London: Knockabout Limited, 2010. Brosh, Allie. Hyperbole and a Half. London: Square Peg, 2013. Costa, Lucy, Jijian Voronka, Danielle Landry, Jenna Reid, Becky Mcfarlane, David Reville, and Kathryn Church. “‘Recovering Our Stories’: A Small Act of Resistance.” Studies in Social Justice 6, no. 1 (2012): 85–101. Cresswell, Mark. “Self-Harm ‘Survivors’ and Psychiatry in England, 1988–1996.” Social Theory and Health 3, no. 4 (2005): 259–85. Crossley, Nick. Contesting Psychiatry: Social Movements in Mental Health. London: Routledge, 2006. Dace, Eleanor, Alison Faulkner, Miranda Frost, Karin Parker, Louise Pembroke, and Andy Smith. The Hurt Yourself Less Workbook. London: National Self-Harm Network, 1998. Frank, Arthur W. Letting Stories Breathe: A Socio-narratology. Chicago: University of Chicago Press, 2010. ———. “Survivorship as Craft and Conviction.” Qualitative Health Research 13, no. 2 (2003): 247–55. ———. “When Bodies Need Stories in Pictures.” In The Routledge History of Disease, edited by M. Jackson, 565–80. London: Routledge, 2017. Haraway, Donna. The Companion Species Manifesto: Dogs, People, and Significant Otherness. Chicago: Prickly Paradigm Press, 2003. Harper, David J., and E. Speed. “Uncovering Recovery: The Resistible Rise of Recovery and Resilience.” Studies in Social Justice 6, no. 1 (2012): 9–25. Kilby, Jane. “Carved in Skin: Bearing Witness to Self-Harm.” In Thinking Through the Skin,

edited by S. Ahmen and J. Stacey, 124–42. London: Routledge, 2001. Lappe, Joseph de. “‘All I Needed Was to Get It Out of My System’: The Early Use of Comics for Mental Health Therapy in America.” Asylum 22, no. 1 (2015): 8–9. LeFrancois, Brenda, R. Menzies, and Geoffrey Reaume, eds. Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013. McCloud, Scott. Understanding Comics: The Invisible Art. New York: First Harper Perennial, 1994. McKeown, M. “Alliances in Action: Opportunities and Threats to Solidarity Between Workers and Service Users in Health and Social Care Disputes.” Social Theory and Health 7 (2009): 148–69. McKeown, M., and H. Spandler. “Solidarity Across Difference: Organising for Democratic Alliances.” In Madness, Distress and the Politics of Disablement, edited by H. Spandler, J. Anderson, and B. Sapey, 271–86. Bristol: Policy Press, 2015. Mills, China. “Sly Normality: Between Quiescence and Revolt.” In Psychiatry Disrupted: Theorizing Resistance and Crafting the (R)evolution, edited by B. Burstow, S. Diamond, and B. LeFrancois, 208–24. Montreal: McGill University Press, 2014. Pembroke, Louise. Self-Harm: Perspectives from Personal Experience. London: Survivors Speak Out, 1994. Rose, Diana, Pete Fleischmann, T. Wykes, Morven Leese, and Jonathan Bindman. “Patients’ Perspectives on Electroconvulsive Therapy: Systematic Review.” British Medical Journal 326 (2003): 1363. Rowan-Olive, Rachel. Goldilocks and the Three Therapists: A Thinly Veiled Autobiography. Shit Stick Figure Books Book 1. 2017. Sadowsky, Jonathan. Electroconvulsive Therapy in America: The Anatomy of a Medical Controversy. London: Routledge, 2017. Scott, James C. Domination and the Arts of Resistance: Hidden Transcripts. New Haven: Yale University Press, 1992. Sen, Dolly. DSM69: Dolly Sen’s Manual of Psychiatric Disorder. London: Eleusinian Press, 2017.

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Shaw, Clare, and Tamsin Walker. Ottis Doesn’t Scratch. Monmouth, U.K.: PCCS Books, 2015. Spandler, H. “Challenges and Opportunities for Compassionate Mental Health Care.” In The Moral Psychology of Compassion, edited by C. Price and J. Caouette, 129–44. Lanham, Md.: Rowman and Littlefield, 2018. ———. “The Problem of Psychiatric Diagnosis.” In Approved Mental Health Practice: Essential Themes for Students and Practitioners, edited by S. Matthews, P. O’Hare, and J. Hemmington, 66–85. London: Palgrave Macmillan, 2014.

Timimi, Sami. “No More Psychiatric Labels.” Asylum 19, no. 1 (2011). http://‌asylum magazine.org‌/2012‌/05‌/no‌‑more‌ ‑psychiatric‌‑labels. Viney, W. Callard, and A. F. Woods. “Critical Medical Humanities: Embracing Entanglement, Taking Risks.” British Medical Journal 41 (2015): 2–7. Walker, T. O. Not My Shame. London: Singing Dragon, 2016. Williams, Ian C. M. “Graphic Medicine: Comics as Medical Narrative.” Journal of Medical Humanities 38 (2012): 21–27.

Funding and Acknowledgments A Wellcome Trust Research Bursary award funded the research that informs this essay. The research explored the back catalogue of Asylum magazine that is available in the Wellcome Collection in London. The author would

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like to thank the survivor artists whose work inspired this essay, as well as Jill Anderson, Arthur Frank, Meg-John Barker, and the editors of this volume, who provided helpful feedback and suggestions for improving the essay.

8

Subverting Stigma Community Building in Serial Comics Leah Misemer

In the world of the Sex Criminals series written by Matt Fraction and Chip Zdarsky and published by Image Comics starting in 2013, some people gain superpowers when they orgasm. The series begins by following Suzie and Jon, both of whom can stop time, but along the way we meet people who astral project, produce horrifying anime monsters, and can fall unharmed from fantastic heights as well. The series content incorporates moments of realism—the library where Suzie works being torn down by a corporation, Jon struggling to perform sexually while on medication for his behavioral disorder, asexual character Alix experiencing sexual abuse—alongside the fantasy story that revolves around sexual superpowers, one that begins when Jon and Suzie are caught by the “Sex Police” (who also have these sexual superpowers) as they are stealing money from the bank where Jon works to save Suzie’s library from demolition. The story spirals out from there, and while the series is ongoing as of this writing in 2019 Suzie and Jon have since gathered a band of supporters, including a sex worker and the aforementioned asexual character Alix, who together plan to oppose the Sex Police.

While this may seem like an odd narrative to view through a graphic medi-

cine lens given its fantasy premise, these outrageous superpowers become just another quirk in individual characters’ experiences of sex and sexuality as they are explored alongside experimental same-sex partnerships, anxieties over lack of experience, and a host of other possible nuances of personal experience. Indeed, each of these aspects of sexuality has at least one issue devoted to that topic. When viewed on their own, each issue provides an important focus on a particular topic regarding sex and sexuality, but when viewed together as a series, the

whole presents an inclusive view of sex and sexuality that is seldom found in other American media, one that asserts that no one should feel ashamed of their sexual proclivities or orientation. My analysis of the series suggests what graphic 136

medicine might have to gain from paying attention to the community-building power of serial narratives.

The serial nature of the narrative in Sex Criminals, the fact that it is published

not all at once but in installments over time, allows the author to respond to the audience while also enabling a community to form through discussions of the quirks of sex and sexuality as explored in the comic. Research from scholars who study the serial novels popular in the nineteenth-century provides a useful framework for analysis of comics focused on seriality. Michael Lund, for example, emphasizes how “both the structure of the individual installment and the gap between parts influenced the ways in which works were perceived and interpreted,” with the individual installments allowing audiences to examine small segments of text more thoroughly, while the gaps allowed them to integrate the stories into their everyday lives.1 In serial novels, the narrative “grew from a simpler to more complex order, from a single initial fragment to an accreting and diversifying collocation of characters and plot lines” that gave more opportunities for readers to identify with characters,2 while the rhythm of publication created “a sense of shared time and shared experience” that helped readers envision themselves as a community.3 In her examination of serial texts from Charles Dickens to twentieth-century soap opera, Jennifer Hayward demonstrates how these gaps also allow for more interaction between readers and authors, allowing readers to shape subsequent installments through their commentary.4 In sum, these authors suggest that serial texts employ the gaps between issues along with the accretion of narrative complexity to integrate texts and stories into readers’ lives, mobilizing the time delay of publication to help build community.

By deploying these features of seriality in a modern-day comic that depicts

a variety of sexual experiences and sexualities, Fraction and Zdarsky help readers build solidarity through conversations that break the deafening silence around sex education in America. I use the phrase deafening silence with all its nuance of meaning to indicate the paradox wherein our visual culture is saturated with mediated sexual imagery, yet in a culture that largely still relies on abstinence-only sex education,5 there is no space to discuss real-life experiences of sexual awakening and sexual experiences. As I show, the authors use individual issues to focus on a specific type of sexual experience, whether that be the frustrating silence surrounding women’s sexual pleasure, the pervasiveness of pornography in a man’s sexual awakening, or the recognition that one is asexual. While the individual issues allow for in-depth exploration of individual experience, the accretion of all the stories within the same series captures the idiosyncratic nature of sexual experience in all its variety. Much as the early American authors of Lund’s study captured a tension between alienation and community while forming their national identity through the tension between

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individual issues in a series, the issues in the Sex Criminals series emphasize formally that we are all “alone together” when it comes to sex and sexuality: our experiences are unique to each of us, but they are all valid and valuable.6

The gaps between issues, as well as the sequentiality of the panels within

the comic, create what I call “correspondence zones,” which I define as spaces of public dialogue that encourage readers to build solidarity and engage in world-making practices. Here, I discuss both internal and external correspondence zones, with the former, created by the authors, encouraging and shaping the latter. The sequentiality of comics panels allows for a juxtaposition of images that is particularly germane for envisioning differing viewpoints on a topic, creating the internal correspondence zone. These images, which dramatize public conversations about a topic, serve as catalysts for readers to discuss how those particular viewpoints relate to their personal experiences, which they do in the external correspondence zone, where Fraction prints reader letters in the letter columns of individual issues of the series, helping readers build the sense of community commonly referenced in discussing seriality.7 While other scholars of seriality have mainly considered the conversation between readers and the author or editor, the correspondence zone concept captures the way readers mobilize the call-and-response structure created by serial publication to agree, disagree, support, and critique one another. Unlike previous examinations of seriality, which demonstrate how authors envision the communities they speak to in their interactions with readers, the correspondence zone acknowledges how some readers come to identify themselves as part of a community that includes other readers and those involved in the creation of the texts they are reading. In the case of Sex Criminals, the readers, encouraged by the frank discussion of sexual experience in the internal correspondence zones of the comic, build a sense of community through their discussions of the stigmatized topics of sex and sexuality in the external correspondence zones. Fraction as author specifically encourages this community building through his curation of the space, extending the exploration of sexual idiosyncrasies beyond the comic and into the paratext, both through the letters he chooses to print and through his inclusion of sex therapist Emily Nagoski answering reader questions.8 The publication of Just the Tips, an entire volume devoted to the conversations of the external correspondence zone, demonstrates how valuable Fraction, Image, and fans of Sex Criminals consider these spaces.9

In this essay, I begin by more fully describing the multiple layers of the corre-

spondence zone concept and laying out its specific implications for graphic medicine, which the authors of Graphic Medicine Manifesto define as a field characterized by both practical and analytical approaches.10 I then explore the Sex Criminals series through the lens of seriality, starting with internal correspondence zones at the level of the page in Suzie’s issue before looking at the correspondence zone across issues in comparing her issue to Jon’s. While Suzie’s issue presents the array of medical, moral, and social forces that regulate and silence Subverting Stigma

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discussion of women’s sexual pleasure, Jon’s issue highlights how commercial forces market highly mediatized sex to men. Taken separately, the issues examine individual awakenings, but viewed together, they reveal the stark differences 138

in attitudes toward women’s and men’s sexual awakening. These issues both capture the tension between individuality and variety enabled by the installments of the series, and highlight the need for the community built within the external correspondence zone I turn to examine next. In the published reader letters of the external correspondence zone, readers create a sense of solidarity and support through the discussions of sex and sexuality engendered by the frank depiction of the subject in the comics, continuing Fraction and Zdarsky’s mission of breaking the deafening silence surrounding the stigmatized topics of sex and sexuality.

Correspondence Zones As I mentioned before, the correspondence zone is a feature of serial publication structure that prioritizes community building through public conversation. It also provides a methodology for reading serial texts that encourages scholars to consider how individual elements of the series respond to one another in the service of creating this public discourse. The term correspondence captures the dialogic nature of the space, as well as the fact that, in many serial media, from nineteenth-century serial novels to modern-day comics, some of that dialogue occurs in spaces where reader letters are printed for all to see. While there are many kinds of public reader response, from YouTube comments to letters to the editor, only when readers begin to respond to one another, or to refer to themselves as a community, does a correspondence zone develop. I refer to these published reader responses, common in serial media, as the external correspondence zone in order to emphasize their association with paratext. The idea of the correspondence zone can be deployed beyond reader letters, used as a lens that places elements of a series in dialogue with one another. The term zone, which marks a delimited but changeable space, highlights the multiple possibilities for dialogue created within the serial form. Readers place themselves in dialogue with each other, with authors, or with the comic, while the issues can be viewed as responding to one another or to previous reader requests. The comics form, often characterized by its multiplicity of panels, pages, text boxes, speech bubbles, images, page spreads, and so forth, may even mobilize the medium’s unique tension between sequentiality and simultaneity to deploy the correspondence zone within a single issue. Panels that position two opposing sets of values, such as those of the medical community and those of women seeking sex advice, may, for example, be viewed as a correspondence zone. These zones unique to the comics form constitute the internal correspondence zone. The internal and external correspondence zones are linked because depictions of relationships within the internal correspondence zone shape the reader responses

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of the external correspondence zone. I consider all forms of the correspondence zone as spaces, albeit virtual, print-based ones because, just as a physical space might, the comic provides a location to which readers continually turn where discussion enhances commonality without flattening diversity among members of the community. In that space, readers build a sense of community through dialogue that, in the case of Sex Criminals, imagines a world where all sexual experiences are accepted and valued, rather than censored, allowing readers to build solidarity through discussions of stigmatized topics.

The lens of the correspondence zone and its consequent focus on serial-

ity meshes with the outward, public-facing nature graphic medicine values in comics as a form. In his contribution to the Graphic Medicine Manifesto, Scott T. Smith encourages scholars to consider “how [comics] are made and experienced by different communities of creators and consumers and how they acquire value through use and circulation,” urging us to focus on a “multiplicity of uses, communities . . . and institutional forces as well as influences and intersections outside of comics.”11 Reinserting the gaps of the serial narrative helps reinscribe reader experience and response, and allows for exploration of how one of the uses Smith mentions is comics’ ability to form communities around stigmatized health topics. In the following essay, Susan Squier positions graphic medicine among other kinds of “engaged scholarship,” meaning scholarship created in conjunction with or for use in activist circles.12 As I do here, she situates comics as a germane medium for sex education through her discussion of the zine Not Your Mother’s Meatloaf, a series that, “rather than normalizing a prescriptive mode of sex-ed curricula offered in medical or religious institutions, . . . offer[s] a plurality of sexual orientations, experiences, fantasies, and encounters with a shared emphasis on self-respect, safety, and nonjudgmental attitudes.”13 While the anthology format of the zine contributed to some of the plurality, the seriality of the publication likely added to that variety as multiple issues were published. This ghost of seriality, which is a common initial publication format in most comics cultures, haunts many texts foundational to comics studies, such as Watchmen and Maus, and graphic medicine, including Hyperbole and a Half and Mom’s Cancer.14 The correspondence zone recovers that history and, in the process, makes us consider how comics do work in the world. In the case of serial comics that cover stigmatized topics such as sex and sexuality, the correspondence zone helps readers feel less alone.

Confronting the Silence In the first few issues of the series, Fraction and Zdarsky use the internal correspondence zone, the one created by the multiplicity of the comics form, to make a case for why the focus of the series on sex education is necessary. The two issues depict the main characters silenced, shamed, mystified, and frustrated by the information about sex (or lack thereof) that comes from a variety of sources, Subverting Stigma

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including doctors, family, peers, pornography, and sex stores. By representing the dialogue between the keepers of information about sex and those just awakening to the experience, the authors both draw attention to the problem and 140

suggest that the world should change. The external correspondence zone of the letter columns provides space for this change to occur, as published reader letters relate to Suzie’s and Jon’s experiences by sharing their personal experiences trying (and often failing) to get information about sex.

The first issue, which depicts Suzie’s sexual awakening as told by her adult

self, captures the silence surrounding discussions of women’s sexual pleasure.15 Suzie experiences her first orgasm in the tub when she seeks solace from her mother’s grief over her father’s murder by hiding underwater to keep from hearing her mother cry. It is there under the faucet and underwater, blocking out her mother’s sobs, that she enters the Quiet for the first time. Depicted on the page as a series of sinuous, pastel glowing lines accompanied by flares of bright white, the colored translucent overlay that comes to mark the time stoppage caused by sexual pleasure throughout most of the series refuses to be contained, starting with just a hint of color and permeating the rest of the panels on that page and the next as adult Suzie narrates the confusion she felt (fig. 8.1). At first, adult Suzie is drawn to romanticizing this discovery of pleasure and power, as she relates that “time stopped // Literally / And I knew” but then stops to say, “You know what, scratch that. / I had no idea what was happening to me whatsoever.”16 The aborted romanticized retelling lets us know immediately that this is not just another narrative about sex; this story about sex will be frank and realistic, even with the fantasy elements. And, as the visual presence marking the Quiet across two pages suggests, those fantasy elements will celebrate women’s sexual pleasure as a power, making it visible rather than erasing it from the narrative. As Suzie’s time in the Quiet continues, adult Suzie’s narration captures the consequences of such erasure as she confesses: “It felt so amazing that / . . . / . . . that I was terrified. / I was confused and terrified.” Not only does lack of information about women’s sexual pleasure cause confusion, but it creates the sense that women’s pleasure is dangerous, something to be feared. The final question on the page, “How could anything make everything get so quiet?,” reinforces the notion that the fear stems from the silence surrounding women’s pleasure. The pauses, indicated by dashes and ellipses throughout, seem to suggest that, despite all her experience, Suzie is finding this difficult to talk about. The adult must still struggle to break through the silence.

The rest of the issue depicts young Suzie’s search for answers about what

happened to her as she runs up against myriad obstacles that indicate the forces silencing discussions of women’s pleasure in society, all of which take advantage of internal correspondence zones to highlight opposition between Suzie and the various regulators. She starts her search the day after by going to the “Dirty Girls” on the soccer field. When Rachelle responds to Suzie’s approach with “Hey, slut. / What do you want?,” Suzie flees in terror, thinking that Rachelle “could tell

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8.1  Matt Fraction and Chip Zdarsky, “Suzie Down in the Quiet,” Sex Criminals 1 (2013).

what I’d done . . . just by looking at me.” The panel where she approaches Rachelle demonstrates comics’ facility with oppositional dialogue as we get an over-theshoulder shot of Suzie’s back juxtaposed with a medium shot of the other girls standing with arms crossed in defensive postures. Her narrative box labeling them “Dirty Girls” is vertically aligned with Rachelle’s “Hey, slut,” response. Both the language and the bodies on the page are opposed and defensive. The labels each character places on the other (“Dirty Girls” and “slut”) reference the ways society silences women by placing them at odds with one another as they appear in this panel. The language continues later in the book when she goes to the same group for answers again. The scene begins with white text on an all-black panel labeling it “Suzie vs. The Dirty Girls Round 2,” delineating the opposition. Throughout this second scene between Suzie and her female peers, she calls them “bitches,” “sluts,” and “skanks,” abusing them in a way that is characteristic of how society treats women comfortable with their sexuality. The label “Dirty Girls” already serves to cordon off those women society deems dangerous because of their sexuality from those society judges to be virtuous, while labels like those Suzie applies are used to silence the dangerous ones, as we see when Suzie’s mother responds with “Great. Now I’m raising a whore,” when Suzie tells her she needs answers to “sex questions.”

Yet while Suzie’s encounters with her peers are definitely oppositional, the

panel compositions of the internal correspondence zones depicting Suzie’s encounters with medical and moral regulators indicate that other sources are more responsible for silencing information about women’s sexuality. The school library is immediately written off as a joke, with the incredulous statement, “No wonder so many dumb kids get knocked up. Nobody knows anything, and if they do, they’re legally bound from telling you,” which highlights both the legal regulation of information and the consequences of that enforced silence. When Suzie asks the gynecologist performing her pelvic exam what happens after an orgasm, his response is “usually you fall asleep, Suzanne. / With your husband,” Subverting Stigma

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Zdarsky, “Suzie Down in the Quiet,” Sex Criminals 1 (2013).

a statement that expresses the heteronormative and misogynistic assumption, present throughout the history of medicine and even seen today, that women must rely on men for pleasure because their bodies are not their own. Unlike in her encounter with her peers who are depicted in the same panel as Suzie, in the scenes where Suzie questions the doctor and her mother, Suzie and the source of information do not appear in the same panel as Suzie asks her questions. Instead, during the medical exam, the panel where Suzie asks her question shows her alone on the exam table above the panel where the doctor appears in the middle of the exam between her knees, juxtaposing Suzie’s search for knowledge against those who continue to regulate it (fig. 8.2). A similar composition occurs in the scene with her mom as she seeks moral answers, though this time the panels of Suzie and her mom are side by side, the gutter between them emphasizing their separateness. In all of these quests for answers, the authors create internal correspondence zones, juxtaposing Suzie against the regulators of information in order to emphasize how opposition to women’s sexual pleasure results in silence surrounding the subject.

The different arrangements create a hierarchy of opposition, with moral and

medical sources enforcing regulation themselves, while broader society creates the opposition between Suzie and her peers. This hierarchy is reinforced when Rachelle, one of these “Dirty Girls,” is the only person who attempts to break the Pathographics

silence for Suzie, pulling her into a bathroom stall and offering her a cigarette before she draws a veritable kama sutra of outrageous sex positions on the wall. She explains that she is doing this for Suzie because “maybe if somebody did this for me, I wouldn’t have HPV and a dad that can’t look me in the eye anymore,” a statement that both highlights the consequences of the silence and the shame placed on women with sexual experience that enforces that silence. Unfortunately, Suzie’s only guide suffers from the “deafening” aspect of the deafening silence shown in Jon’s awakening in issue 2, providing Suzie with misinformation that more resembles pornography than useful sex advice. In the end, Suzie decides to study herself, gathering data about her experience in an effort to understand what is happening to her. The montage page of data collection features Suzie hard at work scribbling in a notebook. The third tier features a long panel with Suzie writing in the center surrounded by notes and dates and charts. She is alone yet surrounded by information. Information she generated. This could be read as a commentary on the need for more women researchers into women’s sexuality, though it is certainly a representation of a girl taking charge of her own body despite the various regulatory systems that aim to control and silence her.

Everywhere and Nowhere In Suzie’s issue, we read about an individual experience that highlights difficulties associated with gender and sex, developing a picture of Suzie as a strong, independent, sexual being. The issue both envisions and breaks the silence surrounding women’s sexuality, employing internal correspondence zones to demonstrate the multitude of medical, moral, and social forces that stifle and shame women’s sexuality. The silence surrounding women’s sexuality is so extreme as to be horrifying, and Fraction’s tone toward his character is sympathetic as she confronts the numerous barriers that prevent her from learning about herself. The picture of the deafening silence around sex is complete when we place that issue in dialogue with Jon’s issue.17 Jon’s reluctance to discuss the subject and his lack of knowledge echoes the silences in Suzie’s issue, but added to those silences is the pervasiveness of sex based on the principle that sex sells. If Suzie’s issue engages the medical, moral, and social silence surrounding sex, then Jon’s issue engages its economic function. While Fraction’s tone toward Suzie is sympathetic, his approach to Jon’s situation is to highlight its ridiculous nature through comedy. If the extreme nature of Suzie’s situation encourages a kind of awed horror at the silence, then the extremes in Jon’s issue tend toward exaggerated, slightly uncomfortable humor that critiques the pervasive misogyny of sex as portrayed through the male gaze of the porn industry.

Fraction and Zdarsky’s choice to use a postcoital question and answer session

with Suzie as a frame narrative, along with the continued references to similarities in the stories, encourages us to place these issues in dialogue with one another. By viewing the two issues as a correspondence zone, layout variations during moments Subverting Stigma

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8.3  Matt Fraction and Chip Zdarsky, “Cumworld,” Sex Criminals 2 (2013).

that otherwise highlight similarity in their stories help emphasize the different gendered experiences of sexual awakening and pleasure. As Jon and Suzie bask in the knowledge that they can both stop time when they orgasm, Jon asks: “How did I know I could do this?” which sounds like someone repeating a question they were asked. Initially, the answer is hesitant, and Jon’s stammering “Well . . . // I was young. Ish. / And, uh . . . / Well, y’know. / First time I. / Y’know” echoes Suzie’s erasures and ellipses, spotlighting the difficulty of talking about self-pleasure. Yet the visual track underneath this stammering begins with the name of the store Cumworld, first writ large on the sign and then reflected in young Jon’s glasses. As indicated by the slang word cum in the store name, sex is public and prurient here, as well as commercial, even though Jon still can’t bring himself to talk openly about it. As he continues to stammer, trying to find the right word for self-pleasure, Suzie continues to nudge him for clarification. The interchange, consisting of six small speech bubbles making a diagonal line in the center of the page, features Jon’s attempts to name the act alternating with Suzie’s questions (fig. 8.3). While Suzie muddled through on her own in her issue, it is in dialogue that Jon finally breaks his silence and begins his story in earnest.

As Jon seeks information in pornography, the panel structure of the inter-

nal correspondence zone echoes that used to depict the oppositional forces that regulated knowledge about sex for Suzie. In the bottom left panel of the page, young Jon appears curled up in a chair with the light of the television reflected in his glasses, though the screen is turned away from us as the text “Back then sex was everywhere. . . .” appears above his head. Next to that panel on the bottom right, we see the distorted pornographic image Jon is watching as he attempts to catch glimpses of an illegal cable channel. The narrative box finishes the sentence from the previous panel, urging an association between the two, with “. . . and, like, nowhere at the same time. Right?” The text and image in each panel contradict each other, with “everywhere” on the panel with no sex and “nowhere” on the panel with the pornographic image, calling attention to the ways sex permeates even places it doesn’t seem to exist while providing no useful information Pathographics

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8.4  Matt Fraction and Chip Zdarsky, “Cumworld,” Sex Criminals 2 (2013).

regarding sexual awakening and experience where it does exist. In its separate panel that echoes the juxtaposition of Suzie and her mom or Suzie and the doctor, the illegal pornography opposes Jon. Similarly, on the following page, as Jon and his friends use a library computer to search for “boners and boobi . . .” on “Ass Jeeves,” Jon and the boys appear in their own panel, opposed to the computer that issues the warning “shame blocker” on a red screen. If we look at these moments of silencing next to the ones from Suzie’s issue, we see a similar regulation, though it is significant that while Suzie was turning to legitimate sources to assuage her curiosity, Jon is turning to pornography.

Which is why Jon actually finds what he seeks: commercial sex is everywhere,

but because it is so highly mediatized, it only provides partial information for teenagers trying to learn about their own bodies. Jon’s first teacher is print pornography he finds buried in the woods, hidden in public. As with the illicit cable, the attempt to hide the sexual media is half-hearted and unsuccessful. As he contemplates the pornography he finds, young Jon still suffers from a lack of information about sex. He knows what sex is, he tells us, and knows about masturbation and orgasms, but he “somehow missed that it was the orgasm part that felt good,” instead considering the act as “something like taxes: a thing grownups did.” The sex-saturated media gives him only some information, and as a result, he misunderstands fundamental aspects of the experience. His reasoning for not masturbating, “because we called guys we didn’t like ‘jerk-offs,’” emphasizes how sex pervades even our language without managing to provide helpful information.

The page where Jon orgasms and stops time for the first time, while it uses

the same glowing sinuous pastel lines and bright flares spread across all the panels, differs markedly from Suzie’s first time in a way that emphasizes his gendered experience. First, he comes to the experience with more information than Suzie, consciously engaging in self-pleasure, whereas Suzie’s first time was an accident. Like Suzie, he is not expecting the pleasure he feels, though instead of feeling terrified, he is curious, represented in two panels fascinated by his ejaculate glowing frozen in midair. Whereas Suzie ends her first moment of time Subverting Stigma

stoppage hiding in bed from the experience, the last panel on the page shows Jon from a low angle with his solar system mobile above him, looking like he owns the universe (fig. 8.4). While women are told to be ashamed of their sexual 146

pleasure and sexuality, men, guided by the sexualized media such as the porn Jon masturbates to, are told to celebrate both. Shortly after this moment, in a return to the frame narrative where Suzie eagerly examines Jon’s glowing penis (another part of his superpower), they discuss what they call the moments of stopped time. Each appears in their own side-by-side quarter panel in close-up. Fittingly given their different themes, Suzie refers to the moments where she can stop time as “The Quiet,” referencing both the comforting and oppositional silence, while Jon names the moments after Cumworld, the sex store he used to frequent whose sign both opens the story and appears again in the other half of this row depicting Suzie and Jon in conversation. While the quarter panels among the more common half panel layouts encourage a fitting together of the two images of the characters, the fact that they appear in separate panels calls attention to their differences, enacting the single issue/series relationship of individuals together at the level of the page. The fact that adult Jon’s eyes glance toward the larger, half panel image of his younger self gazing up at the Cumworld sign suggests why their experiences might differ. Because the sexualized media court and cater to men, Jon’s experience of sexual awakening differs markedly from Suzie’s, even though they both stop time when they orgasm.

When Jon enters Cumworld during a moment of stopped time (his cumworld),

we are overwhelmed by the myriad ways that sexualized media cater to men. In the panel where Jon enters the store, he appears as a small background figure, overshadowed by the many items for sale in the store. This composition serves to emphasize the commercial nature of the space as well as captures how overwhelmed young Jon must have felt when he entered for the first time. Zdarsky’s numerous puns and jokes, many written in minuscule font that is barely readable, ignite the same curiosity in us that Jon likely experienced. Like Jon, we want to explore the nooks and crannies of the image, to understand all the Easter eggs and references it has to offer, from the Pussy Sleeping Bag on the ceiling, to the 69 percent off all titles, to the much smaller and easier to miss Way Too Much Lube or the Smokey in the Bandit DVD in the section for smokers. The Easter eggs Zdarsky includes make us, like Jon, explore the store with glee and draw us into a space that, through its reference to mundane nonsexual topics, demonstrates that anything and everything can and will be turned into sex, just as it often is in our society. The second row on the page depicts four panels of pornography DVDs featuring sexualized women on their covers, reminding us that while the most mundane topics might be fair game for sexual marketing, marketing is largely targeted at heterosexual men. The panel at the bottom right that foregrounds money frozen in a customer’s hand reminds us that sex pervades society because sex sells.

While Suzie must create her own knowledge base because of the way women’s

sexuality is censored, Jon is welcomed and enveloped by the commercial forces

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of sexualized media. Putting the two issues in dialogue with one another, as I have here, serves to highlight that difference, though we must also remember that they are in the same series. In both issues, Fraction portrays the way we talk about sex in America as broken, including how the deafening silence doubly oppresses women: women are both expected to display themselves as sex objects for the male gaze (as we see in Jon’s issue) and denied information about their own sexuality and pleasure (as we see in Suzie’s). The initial issues of the series present a critique of how a variety of sources—from doctors and schools to the porn industry and the larger media—currently discuss sex, including the silencing of women and the misinformation of men. My focus has remained on Suzie and Jon, the heterosexual couple who are the main protagonists of the narrative, but it is important to remember that the series is not limited to cisgendered heterosexual explorations of sex and sexuality. Indeed, sexuality becomes incredibly blurry and situationally dependent as the narrative moves forward, with Jon discussing a same-sex encounter, even though he identifies as heterosexual most of the time, and issues devoted to, for example, a bisexual dominatrix and asexual character, respectively. By using individual issues to depict frank portrayals of sexual awakening attached to a variety of individual characters, Fraction and Zdarsky create a narrative that attempts to repair these gaps and silences in how we talk about sex, providing numerous options for reader identification while also stressing that all sexual experiences, no matter how idiosyncratic or odd they may seem, are valid and valuable, despite the stigma associated with the topic. When readers wrote in to respond to these depictions in the comic, and then to one another, their conversations about the stigmatized topic helped them form a supportive community.

We Are All Alone, Together By depicting the silencing of women’s sexuality and the commercialization of men’s, Fraction encourages readers to respond to the subject matter in the letter columns, which constitute the external correspondence zone of the series. In their letters, readers follow Fraction’s lead, discussing their own sexual experiences with honesty and openness as they take advantage of the gap between serial issues to relate the characters’ experiences to their own lives. As these experiences, encouraged by Fraction both through his choice to print them and through his public editorial responses to them, accumulate in the letter columns over time, readers begin responding to one another, referencing each other’s letters and offering support and validation, both of which are crucial aspects of community building through discussion of stigmatized topics. It is important to note that I am not viewing these spaces as unmediated ones. In fact, I am suggesting the opposite, claiming that Fraction consciously cultivates this community through his choices of letters in his quest to make the comic a tool for the kind of sex education not found elsewhere. His comic breaks the silence and then his choices of Subverting Stigma

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reader letters continue that mission. While this deliberate cultivation of the space for a specific purpose marks these particular letter columns as exemplary, it also acknowledges the fact that letter columns are always mediated, selected by editors 148

with particular agendas. And those agendas are part of what can make this form of correspondence zone so powerful: if editors have social activist goals like Fraction’s, then they can cultivate the space in a way that promotes those goals. The letter columns thus can illuminate important aspects of editorial or authorial values alongside those of their readers. The fact that authors like Fraction expend the effort to shape such spaces further demonstrates their importance within comics history. In this section, I expand my scope to examine not just the letter columns of the issues I have discussed so far, but those of subsequent issues, in order to track the community formation enabled by seriality.

From its first appearance in issue 2,18 Fraction positions the letter column

(affectionately titled “Letter Daddies” as a play on Leather Daddies) as a space for discussing issues related to sex education, responding in part to the lack of sex education available in American schools. Relating to Suzie, reader Julie highlights how difficult it was for her, as a woman, to get information about sex: “Growing up, I always felt it was so taboo to talk about sex and touching oneself, and the couple of times I tried to ask friends or teachers at school, I either choked up until I cried or ran away. Sometimes both. Sex education in school goes over the respective organs, and nothing about how to have physically safe sex and how it should feel. People cut off discussion, even doctors. . . . There are very few places outside the bedroom where women can not-so-secretly enjoy the subject of sex, thank you for creating a new space.”19 We see echoes of Suzie’s experience in Julie’s comment, including many of the regulatory forces—friends, doctors, teachers—that enforce the silence around sexuality. By sharing this experience, Julie brings Suzie’s experience out of the realm of fantasy and connects Suzie’s frustrations to a real person. Julie connects the taboo to discussions of female sexuality in particular and thanks Fraction for his frank discussion of the subject. By commenting on how the comic breaks the silence by “creating a new space,” and by relating it to her own experience, Julie adds to that new space, at the same time speaking back to the regulatory forces that aim to silence women’s sexuality.

In the following issue, reader Red situates the educational function of the

series in opposition to the silence surrounding such topics elsewhere: “Damn, two issues in and already Sex Criminals feels like better sex education than the sort I had in high school. I wish I’d read this when I was busy feeling ashamed of myself.”20 This reader’s bemoaning of the inadequacies of sex education is a common theme throughout the “Letter Daddies.” It also identifies the inadequacy of that education as a source of shame, calling attention to how the inadequacy of sex education stems from the taboos surrounding the subject, particularly regarding women’s sexuality. Reader Ellie R. takes up the same subject in a letter in issue 4. After stating that she “grew up in an uber Christian home” where sex

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was discussed once and then never again, she says that she “kind of learned more about sex from the internet” before ending with the statement that sex education in school “didn’t exist.”21 Building on Red’s comment about the series being a tool for sex education, Ellie R. alludes to the “everywhere and nowhere” nature of sex through her reference to learning from the internet. Fraction’s printed response to this letter validates the fact that these readers see the “new space” of Sex Criminals as an educational one, while also providing some insight into the nature of the kind of education he hopes to impart. His statement “And that would be day one of my Sex Ed class: All y’all freaks is different. We are all alone together”22 emphasizes how sexual desire and sexuality are idiosyncratic experiences, and suggests that, rather than being ashamed of those idiosyncrasies, they should help us feel a part of a community.

Perhaps in order to demonstrate the truth of this statement that discussing

unique sexual experiences in a frank manner should help us form solidarity, in the letter columns of that same issue, Fraction prints two other letters that reference how the comics and their letter columns have helped them become more comfortable with their own sexual proclivities. Reader Ash L. credits the comic with helping ease their anxieties when they write: “I love seeing characters that seem to struggle with sex the same way I do. . . . I sometimes have felt alone due to feeling like a ‘late bloomer’ and being too anxious to ask people out or to fuck or whatever. But like Suzie and Jon, I’ve also realized that there are people out there who make it feel okay, no matter how weird and/or new your sexual history is.”23 Ash L. responds to the frank representation and suggests that it has helped them overcome some of their own fears. A letter from Andy M. links this representation in the comic to the letter columns specifically when he says, “Like Suzie finding John [sic], I feel connected to the people in your letters column in a way I thought I would never know.”24 By comparing the relationship building in the comic to the relationship building in the letter columns, Andy M. suggests that the former encourages the latter. In the following issue, reader Anthony connects the community building of the letter columns to the sharing of sexual experience when he says, “One of the things I like about Sex Criminals is the letter page, because it’s a place for the fans and readership to come together and dive into their secrets.”25 Just as the characters throughout the series find one another and come together, so the readers come together through their frank discussions of this stigmatized topic, discussions spurred by the honest portrayals in the comic. Through discussing sex and sexuality in this correspondence zone enabled by the serial structure of the comic, people find a sense of community and belonging through, rather than despite, a topic usually associated with shame.

Conclusion My examination has peeled back the layers of correspondence zones present in serial comics. Though I have widened my scope systematically throughout this Subverting Stigma

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essay, beginning at the level of the page and zooming out to look across issues and then to the whole series, the layers are all interconnected. With regard to stigmatized topics such as the sexual experiences discussed in Sex Criminals, the 150

deployment of the internal correspondence zone allows creators to highlight silencing, tension, or regulation and, by placing a spotlight on such opposition, encourages readers to speak back against that opposition in the external correspondence zone. Similarly, the correspondence zone across issues allows for a representation of diversity of experience without undermining a sense of solidarity, and the community built in the external correspondence zone reflects that diversity. Just as the characters that accrete over the course of the series have their separate powers yet remain in the same series, so readers have their own sexual desires and experiences yet consider themselves all part of the same community.

The series has taken particular pains to critique heteronormativity in sex

education, presenting sexuality as a spectrum rather than a binary. And yet the series is still created by two white guys. In fact, frustrated with a story line that sidelined Suzie and tired of the dominance of the sexual puns that pervaded several issues, I stopped picking up new issues for several months in 2014. This personal anecdote highlights how serial narratives should refrain from alienating certain audiences lest they undermine the community they aim to build. From an economic standpoint, this is dangerous for creators, as losing potential purchasers can lead to the cancellation of the series. But a series can also redeem itself, as Sex Criminals did when Fraction and Zdarsky focused a whole issue on asexual character Alix. In this case, the diversity in the external correspondence zone influenced the course of the comic when asexual readers started writing letters claiming to value the series and requesting an asexual character, the first of which is printed in issue 9.26 At first, Fraction refuses on the grounds that he doesn’t feel he has the knowledge to do justice to such a character.27 But after multiple letters in issues 10 and 11, issue 13 features asexual character Alix in what Nick Miller has discussed as one of the most thoughtful portrayals of asexual identity in comics.28 The gaps between issues facilitate the interplay of all of these layers of correspondence zones, marking why it is essential to pay attention to serial publication structures.

While analyzing comics necessarily involves engagement with serial texts,

paying attention to the opportunities afforded by texts’ seriality helps lift our eyes away from the text to focus on what comics do in the world, which is essential to understand given the public health or activist academic bent of the field of graphic medicine. Beyond just seeing the community building, we might recognize the potential for readers to help shape stories or the potential of serial print texts to nimbly respond to current events and cultural contexts. For example, what might we find if we consider the legacy virus that plagued the X-Men in the 1990s alongside the AIDS crisis in the same era? Or what might we gain from looking at Hyperbole and a Half in its original form as a webcomic, complete with

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the public comments sections where readers built a sense of community around discussions of depression inspired by the comic?

Meanwhile, practitioners of graphic medicine may consider the essential oppor-

tunities for community building that serial form can provide. As I have discussed elsewhere, serial anthologies allow readers to speak back to one another in comics form, deliberating and critiquing community values in order to strengthen solidarity,29 while some form of letter column allows for readers to extend this community beyond the comic and into their own lives. Think of the potential these serial features could have for those struggling with, for example, chronic illness: people could rely on the comic as a source of support while undergoing treatment. Caretakers would likely appreciate a similar support system. More thorough attention to serial publication structure will help both scholars and practitioners recognize the myriad benefits and opportunities of serial publication.

Notes 1. Michael Lund, America’s Continuing Story: An Introduction to Serial Fiction, 1850–1900 (Detroit: Wayne State University Press, 1993). 2. Linda K. Hughes and Michael Lund, The Victorian Serial (Charlottesville: University Press of Virginia, 1991). 3. Catherine Delafield, Serialization and the Novel in Mid-Victorian Magazines (Burlington, Vt.: Ashgate, 2015), 10. 4. Jennifer Hayward, Consuming Pleasures: Active Audiences and Serial Fictions from Dickens to Soap Opera (Lexington: University Press of Kentucky, 1997). 5. Kelli Stidham Hall et al., “The State of Sex Education in the United States,” Journal of Adolescent Health 58, no. 6 (2016): 595–97. 6. Matt Fraction and Chip Zdarsky, “Sex Police,” Sex Criminals, no. 4 (2014). As is often the case with comics, neither the individual issues nor the collected editions of the series include page numbers. 7. While Matt Fraction and Chip Zdarsky clearly collaborate on all aspects of the comic creation, Fraction is the most active and present in the letter columns. Therefore, when discussing the letter columns in the series, I consider him the editor and author. 8. Matt Fraction and Chip Zdarsky, “Break, Enter,” Sex Criminals, no. 7 (2014). 9. Matt Fraction and Chip Zdarsky, Just the Tips (Berkeley, Calif.: Image Comics, 2014). 10. MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith, introduction to Graphic Medicine Manifesto (Pennsylvania: Pennsylvania State University Press, 2015). 11. Scott T. Smith, “Who Gets to Speak? The Making of Comics Scholarship,” in Graphic

Medicine Manifesto (University Park: Pennsylvania State University Press, 2015), 35. 12. Susan Squier, “The Uses of Graphic Medicine for Engaged Scholarship,” in Graphic Medicine Manifesto (University Park: Pennsylvania State University Press, 2015), 52. 13. Ibid. 14. Though early comics scholarship tended to ignore the opportunities afforded by serial publication because of an overwhelming focus on the graphic novel published all at once, recently a number of scholars have begun paying attention to the opportunities a serial publication structure provides, including Osvaldo Oyola in the posts “The Pleasure of the Serial Comic Book” and “Girl You’ll Be an Invisible Woman Soon: Defining Serial Characters” found on his award-winning comics blog The Middle Spaces, and Frederik Byrn Køhlert in Serial Selves: Identity and Representation in Autobiographical Comics (New Brunswick: Rutgers University Press, 2019). 15. Matt Fraction and Chip Zdarsky, “Suzie Down in the Quiet,” Sex Criminals, no. 1 (2013). 16. In order to capture the way Fraction tends to break up dialogue between different speech bubbles in the same panel and across panels, I have adopted a notation style where “/” marks a break to a new speech bubble in the same panel and “//” marks a break to a speech bubble in the next panel. 17. Matt Fraction and Chip Zdarsky, “Cumworld,” Sex Criminals, no. 2 (2013). 18. Fraction and Zdarsky, “Cumworld.” 19. Ibid. 20. Matt Fraction and Chip Zdarsky, “My Sexual Errors and Misfortunes 2001–Present,” Sex Criminals, no. 3 (2013).

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21. Fraction and Zdarsky, “Sex Police.” 22. Ibid. 23. Ibid. 24. Ibid. 25. Matt Fraction and Chip Zdarsky, “Going Down,” Sex Criminals, no. 5 (2014). 26. Matt Fraction and Chip Zdarsky, “Ana,” Sex Criminals, no. 9 (2014). 27. Ibid. 28. Matt Fraction and Chip Zdarsky, “Alone Together,” Sex Criminals, no. 10 (2015); Matt

Fraction and Chip Zdarsky, “Manime,” Sex Criminals, no. 11 (2015); Matt Fraction and Chip Zdarsky, “Bace,” Sex Criminals, no. 13 (2015); Nick Miller, “Asexuality and Its Discontents: Making the ‘Invisible Orientation’ Visible in Comics,” Inks: The Journal of the Comics Studies Society 1, no. 3 (2017): 354–76. 29. Leah Misemer, “Serial Critique: The Counterpublic of Wimmen’s Comix,” Inks: The Journal of the Comics Studies Society 3, no. 1 (2019): 6–26.

References Sex Criminals Fraction, Matt, and Chip Zdarsky. “Suzie Down in the Quiet.” Sex Criminals, no. 1 (2013). ———. “Cumworld.” Sex Criminals, no. 2 (2013). ———. “My Sexual Errors and Misfortunes 2001–Present.” Sex Criminals, no. 3 (2013). ———. “Sex Police.” Sex Criminals, no. 4 (2014). ———. “Going Down.” Sex Criminals, no. 5 (2014).

———. “Break, Enter.” Sex Criminals, no. 7 (2014). ———. “Ana.” Sex Criminals, no. 9 (2014). ———. “Alone Together.” Sex Criminals, no. 10 (2015). ———. “Manime.” Sex Criminals, no. 11 (2015). ———. “Bace.” Sex Criminals, no. 13 (2015).

Other Sources Czerwiec, MK, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith. Introduction to Graphic Medicine Manifesto. Pennsylvania: Pennsylvania State University Press, 2015. Delafield, Catherine. Serialization and the Novel in Mid-Victorian Magazines. Burlington, Vt.: Ashgate, 2015. Fraction, Matt, and Chip Zdarsky. Just the Tips. Berkeley, Calif.: Image Comics, 2014. Hall, Kelli Stidham, Jessica McDermott Sales, Kelli A. Komro, and John Santelli. “The State of Sex Education in the United States.” Journal of Adolescent Health 58, no. 6 (2016): 595–97. Hayward, Jennifer. Consuming Pleasures: Active Audiences and Serial Fictions from Dickens to Soap Opera. Lexington: University Press of Kentucky, 1997. Hughes, Linda K., and Michael Lund. The Victorian Serial. Charlottesville: University Press of Virginia, 1991. Køhlert, Frederik Byrn. Serial Selves: Identity and Representation in Autobiographical Comics. New Brunswick: Rutgers University Press, 2019. Lund, Michael. America’s Continuing Story: An Introduction to Serial Fiction, 1850–1900. Detroit: Wayne State University Press, 1993.

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Miller, Nick. “Asexuality and Its Discontents: Making the ‘Invisible Orientation’ Visible in Comics.” Inks: The Journal of the Comics Studies Society 1, no. 3 (2017): 354–76. Misemer, Leah. “Serial Critique: The Counterpublic of Wimmen’s Comix.” Inks: The Journal of the Comics Studies Society 3, no. 1 (2019): 6–26. Oyola, Osvaldo. “Girl, You’ll Be an Invisible Woman Soon: Defining Serial Characters.” Middle Spaces (blog). November 29, 2016. https://‌themiddlespaces.com ‌/2016‌/11‌/29‌/girl‌‑youll‌‑be‌‑an‌‑invisible ‌‑woman‌‑soon‌‑defining‌‑serial‌‑charac ters. ———. “The Pleasure of the Serial Comic Book.” Middle Spaces (blog). March 7, 2017. https://‌themiddlespaces.com‌ /2017‌/03‌/07‌/pleasure‌‑of‌‑the‌‑comic‌‑book. Smith, Scott T. “Who Gets to Speak? The Making of Comics Scholarship.” In Graphic Medicine Manifesto, 20–40. University Park: Pennsylvania State University Press, 2015. Squier, Susan. “The Uses of Graphic Medicine for Engaged Scholarship.” In Graphic Medicine Manifesto, 41–66. University Park: Pennsylvania State University Press, 2015.

9

Psychosis Blues Schizophrenia, Comics, and Collaboration Elizabeth J. Donaldson

Schizophrenia, Comics, and Disability Studies In the field of disability studies, authenticity of experience holds a special place in the political and cultural sphere: “nothing about us without us.”1 The disability civil rights movement demands that disabled people have the opportunity to directly participate in public policy decisions that affect them, and, in disability studies scholarship, it follows that disabled people are best positioned to write about and represent the lived experience of disability. Yet there are some experiences of disability—especially those that involve significant cognitive impairments—that complicate this ideal of immediate participation and self-representation. For example, there are relatively few firsthand, individually authored accounts of schizophrenia: the autobiography The Center Cannot Hold by psychiatric supercrip Elyn Saks is practically in a class by itself.2 Comics singly authored by artists diagnosed with schizophrenia are also quite rare.

This essay focuses on schizophrenia, a chronic and debilitating illness that

is associated with psychotic thinking, hallucinations (especially auditory hallucinations or voices), delusions, and other cognitive and affective impairments. Schizophrenia has a long and problematic history in psychiatry, and it is an especially vilified subject position to occupy.3 I would argue that it is the most denigrated, feared, and maligned of all mental illness identity categories, and I want to conjure up all of that history and stigma when I use the term schizophrenia. In the 1960s and 1970s, antipsychiatrists such as Thomas Szasz advocated

to abolish the concept of mental illness altogether, and more recently, within the field of psychiatry, proposals to redefine the diagnosis of schizophrenia as a psychosis spectrum disorder have gained momentum.4 Following Szasz and 154

taking the position that mental illness does not exist, however, has not proved a viable option for political advocacy, just as pointing out that human races are cultural, not biological, has not been an effective tool in fighting structural racism. And while someday the unique stigma of the schizophrenia diagnosis might be diluted by its disappearance into a larger, more fluid, and forgiving psychosis spectrum disorder, that day hasn’t arrived yet. Talking about schizophrenia is necessary precisely because it is so complex and stigmatized and because it focuses needed attention on a misunderstood mental disability. Disability rights activist Lawrence Carter Long urges us to make these sort of rhetorical moves in order to change the public conversation: his campaign to just #saytheword disabled is an effort to make disability issues, which are too often neglected or concealed, more prominent.5 In comics, the depiction of mental illnesses has a long history, and, as I go on to show, portrayals of psychosis and schizophrenia are especially problematic and are worthy of closer, more explicit analysis.

My argument in this essay is grounded in disability studies of mental illness

and has three components. First, I briefly examine depictions of mental illness in superhero comics that link criminality and psychosis. This entrenched negative representational tradition, illustrated perhaps most notably by the patients of Arkham Asylum in the Batman series, reflects harmful stereotypes that circulate throughout the larger culture and are stigmatizing to people with mental illnesses. Superhero comics are ripe for a reckoning with the neurodiversity movement.6 Second, I argue that the experience of mental illness is a foundational and integral part of the genre of graphic memoir and autobiographical comics, and that this is a welcome parallel countertradition and contrast to depictions of mental illness in the superhero genre. This section begins with Justin Green’s Binky Brown Meets the Holy Virgin Mary and then moves forward to include more recent work in graphic medicine and memoir, such as Darryl Cunningham’s Psychiatric Tales.7 And finally, the last part of the essay focuses on biographical writing about schizophrenia and psychosis, which is relatively rare and can take a unique collaborative form in comics, as illustrated by Clem and Olivier Martini’s work in Bitter Medicine and The Unravelling and by Ravi Thornton and her team of artists in HOAX: Psychosis Blues.8 The power dynamics in authoring collaborative texts about disability are complex, especially when disabled and nondisabled authors work together to describe disability experience, and not all collaborations are equitable or successful. Yet in these examples, the collaborative form is a strength that makes a maligned disability experience publicly legible in new innovative ways and models a communal, politically engaged response to the often isolating experience of schizophrenia.

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Criminality and Mental Illness in Superhero Comics As any reader of superhero comics knows, mental illness and criminality are commonly linked in the genre, most notably in the Batman franchise. For example, many of the archvillains of Batman find themselves as inmates/patients of Arkham Asylum, DC Comics’ fictional, cartoon version of a forensic psychiatric institution. But Arkham wasn’t always the gloomy madhouse that it is portrayed as today.

When it first appeared in 1974, it was simply “Arkham Hospital,” even though

this rather generic name, “hospital,” was admittedly “a polite name for an asylum which houses the criminally insane.”

9

For example, in an early depiction, a

mundane “Arkham Hospital” plaque in the illustration contradicts the alarmist language in the text, which warns that Arkham holds “the most dangerous men alive.”10 Over the years, polite euphemisms have dropped away, and text and image are more clearly aligned. The simple midcentury modern lines of Arkham’s architecture have transformed into an elaborate hypergothic structure: Arkham Hospital is now the Elizabeth Arkham Asylum for the Criminally Insane (or simply Arkham Asylum), and the depictions of Arkham’s mentally ill patients are even more exaggerated.

The juxtaposition of early and later images of Arkham reflects the comic’s

movement from “polite” low-resolution depictions of insanity and madness to high-resolution portrayals of violence and criminal psychosis. By the 1980s, Arkham and its inmates had become the vehicle for what Marc Singer describes as “one of superhero comics’ most emblematic and potent methods of signification, their proclivity for physicalized representations of psychological traumas and tensions.”11 Moreover, these representations consistently link criminality and mental illness.

Today’s Arkham Asylum embodies both fear of psychiatric illness and fear

of psychiatry and psychiatric treatment, as demonstrated by Batman’s most infamous villain, the Joker, his partner Harley Quinn, and the physicians associated with Arkham. First introduced in 1940, the Joker has, like other serial characters in multiauthored, long-running serial comics, undergone several historical iterations. For example, the recent Joker (2019) film creates a history of childhood trauma that offers new explanations for his violent behavior. But, in essence, he has remained consistently “psychopathic”: he is a violent criminal who lacks empathy for his victims and has a long record of incarceration in Arkham Asylum. Critical responses to the Joker’s psychopathy range from Deneb Kozikoski Valereto’s reading of his character as an epistemological challenge to reason and madness, to John Goodwin and Izzat Tajjudin’s efforts to undiagnose all of the mental ills that have been attributed to him: schizophrenia, dissociative identity disorder, and post-traumatic stress disorder.12 In the comic, the Joker’s madness and his villainy are inextricably linked, and in one of his many detentions at Arkham he is treated by the psychologist Dr. Harleen Frances Quinzel. The Joker’s criminal madness is also contagious, and the doctor falls in love with

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him, transforms into villain Harley Quinn, and eventually becomes an inmate at Arkham herself. Like a dangerous disease, madness at Arkham spreads and metastasizes. While Harley Quinn becomes mad and then leaves her mental 156

health profession behind, other psychiatrists, such as Jeremiah Arkham and Hugo Strange, represent the more traditional “mad doctor” stereotype: doctors and scientists whose practice of medicine is ethically corrupt and pathological. Psychiatry and psychiatric treatment is infected at its core in Arkham.

The physicians and inmates of Batman’s Arkham Asylum are extreme exam-

ples of a suspicion of psychiatry and of the conflation of mental illness and dangerousness that are pervasive beliefs in our culture in the United States. These ideas proliferate and work both to anticipate violence from people thought to be mentally ill and to retroactively ascribe mental illness to violent acts. Media coverage of the October 1, 2017, mass shooting in Las Vegas is one case in point. A single gunman, with no apparent motive, shot into a crowd, killing fifty-eight people and injuring hundreds more. The inability to discern a motive for the mass murder created an interpretive dilemma and led fairly quickly to headlines like “Was the Las Vegas Shooter Mentally Ill?” and “Investigators Suspect the Las Vegas Gunman Had Undiagnosed Mental Illness.”13 Since the shooter didn’t have a history of mental health problems, journalists covering the shooting made attempts to retroactively construct a psychiatric diagnosis, relying on a familiar, and false, narrative about the dangerousness of people with mental illness.14 In general, people with mental illnesses are more likely to be victims rather than perpetrators of violence.15 This false narrative of dangerousness is also deployed speculatively, as the April 2018 deportation case of Chinese student Wenliang Sun illustrates. While the legal grounds for Sun’s deportation from the United States were fairly prosaic—violating the terms of his student visa by not attending classes at the University of Central Florida—law enforcement and media coverage of the case portrayed Sun as a mentally ill mass shooter in the making. Authorities noted that Sun was “uncommunicative with others” and did not leave his bedroom; he dyed his hair blond and bought a Corvette and two guns.16 Although Sun never made any threats to himself or others, he was clearly depicted as an imminent threat: “I think there was a disaster about to happen and we stopped it,” UCF Police Chief Richard Beary stated.17 Sun’s scripted transformation from student to supervillain echoes the connection between mental illness and criminality in superhero comics.

Mental Illness in Graphic Memoir and Medicine Fortunately, this stigmatized depiction of criminal madness in superhero comics and the mass media contrasts with the portrayal of mental health issues in many graphic memoirs. One could even argue that the empathetic treatment of mental health issues is foundational to the genre of graphic memoir. Justin Green’s Binky Brown Meets the Holy Virgin Mary, which tells the story of an adolescent boy’s

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obsessive thoughts about defiling the Virgin Mary, is widely acknowledged as the first autobiographical comic.18 In Alternative Comics, Charles Hatfield describes Binky Brown as “the ur-example of confessional literature in comics” and “the wellspring of autobiographical comics.”19 Green’s influence on other cartoonists has been well noted and enduring: in his introduction to the 2009 reprint of Binky Brown, Art Spiegelman pays tribute to Green’s work and writes: “It’s no small thing to invent a genre.”20 While Binky Brown is often recognized for its part in creating the genre of autobiographical comics and for Green’s influence on other cartoonists, it is less often acknowledged as an early psychiatric “graphic pathography.”21 Some readers have focused primarily on Binky Brown’s Catholic guilt and the religious themes in the comic. Others have focused on Binky Brown’s place in the underground comix tradition and on the comedic phallic content of the story: Binky’s abiding concern is preventing his multiple and illusory “pecker rays” from intersecting with statues of the Virgin Mary. But the psychiatric disability content of Green’s narrative is equally as important and is also just as revolutionary as Green’s innovation in the generic conventions of comics. From its very first page, Green’s comic foregrounds his mental distress and explicitly calls on a community of fellow neurotics to unite: “If all we neurotics were tied together we would entwine the globe many times over in a vast chain of common suffering.”22 Binky Brown ends with a page that promises “$5,000 worth o’ psychiatric advice for a mere 50¢!”23 Years before his official diagnosis with obsessive-compulsive disorder (OCD), Green bookends his story with references to psychiatry, self-identifies as neurotic, and invokes a fellowship of disabled people.

Since 1972 and the publication of Binky Brown, this autobiographical confes-

sional bent in comics has become even more medicalized and linked to illness. “The evolution of American autobiographical comics over the past decades,” Christina Koch writes, “has been increasingly accompanied by a strong trend toward subject matters of illness, disability, or more generally any physical or psychological traits perceived as deviations from the norm. As such, the popular form of graphic memoir is more and more linked to the history of literary illness narratives.”24

Moreover, portrayals of mental illness have become more common in graphic

and nongraphic literary genres, although its inclusion is often oblique or circuitous in graphic memoirs and novels. For example, David Small’s Stitches and John Porcellino’s Hospital Suite begin with a journey through physical illness (cancer and gastrointestinal surgery, respectively) and then make their way to neurosis and psychiatric disorder.25 Allie Brosh’s Hyperbole and a Half deals with, among other things, the artist’s experience of depression and anxiety; Ian Williams’s The Bad Doctor embeds the rituals and intrusive thoughts of OCD in its narrative; and Fun Home weaves Alison Bechdel’s OCD experience into her family history.26 Works that foreground the experience of mental illness include Ellen Forney’s Marbles, about manic depression (or bipolar disorder); Madison Clell’s Cuckoo, Psychosis Blues

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about dissociative identity disorder (commonly known as multiple personality disorder); Brick’s Depresso, about depression and extreme changes in mood; and Paul Hornschemeier’s Mother, Come Home, about depression and suicide.27 158



Even though the comics genre as a whole, including works about mental

illness, may be flourishing, comics and graphic novels and memoirs that focus specifically on schizophrenia are still few and too far between. This is a shame because of the medium’s potential to change public perceptions of mental illness and because these are lives worth knowing more about. Nate Powell’s acclaimed graphic novel Swallow Me Whole portrays psychotic episodes that readers are apt to associate with a diagnosis of schizophrenia, and as Sarah Thaller notes, this work “has the potential to create more complicated, personalized understanding of mental illness.”28 Yet Powell’s work doesn’t confront stigma or the schizophrenia diagnosis head-on. Darryl Cunningham’s Psychiatric Tales, however, does.29 Psychiatric Tales is a collection of graphic stories based on Cunningham’s experiences working with patients in a psychiatric ward. Cunningham is also an artist with lived experience of mental illness—he has depression and anxiety—and so he is uniquely positioned here. The stories in Psychiatric Tales work to demystify mental illness, combat stigma, build empathy, and educate readers, and these are fairly common features of how educational narratives of mental illness in graphic medicine work.30 In his chapter “Schizophrenia,” Cunningham takes on two major misconceptions of the illness: its confusion with multiple personality disorder and its conflation with violence. On this opening page to the chapter (see fig. 9.1), the very measured pace and balance of Cunningham’s panels work to contain and to control the sensationalist newspaper headline. Cunningham literally reframes the association of crime and mental illness, noting that “most crimes are committed by the sane.”

Joshua Fialkov’s serial comic Echoes, which was collected and released as a

one-volume hardback in 2011, also plays with the stereotypical association of mental illness and violence in order to dismantle that false narrative.31 Echoes is a fictional horror comic that tells the story of Brian Cohn, a man with schizophrenia, and his dying father, who also has schizophrenia (and Alzheimer’s). On his deathbed, Cohn’s father seemingly confesses to the serial murder of children. The plot of the comic follows Cohn as he tries to unravel the mystery of his father’s confession, while he also attempts to manage the disruptive symptoms of his mental illness: paranoia and hallucinations. Echoes is especially interesting because of the way it plays between two distinct generic traditions—graphic medicine narratives and superhero comics—borrowing conventions from each. The writer, Fialkov, was formerly with DC Comics, and his father is a forensic psychiatrist. And his collaborating artist, Rahsan Ekedal, had a brother with what he believes may have been undiagnosed schizophrenia, who died in an accident related to his illness. The suspense in Echoes hinges on the readers’ association of schizophrenia with violence and criminality, which the main character’s paranoia reinforces.32 At the same time, Echoes contains an almost educational element in its portrayal of

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9.1  Darryl Cunningham, “Schizophrenia,” 2009.

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schizophrenia. The comic shows the main character explaining his symptoms and his medication to himself and to the readers: he reminds himself that his hallucinations are “not real. It’s just a chemical reaction in your brain that makes you 160

extra anxious” (see fig. 9.2). “This is just my brain working against me,” he continues: “This is just the meds wearing off and my paranoia taking over.”

In figure 9.3, we see a close-up of Cohn’s face, revealing his anxiety, together

with the face of his watch, reminding him to take his clozapine, an antipsychotic medication (see fig. 9.3). This panel visually depicts how he manages his symptoms in crip time: revealing both the inner symptoms (the anxiety and the hallucinations) that are invisible to others and the external technologies of mental health care (the watch and the medication) that might otherwise pass unnoticed.33 Echoes is a powerful two-pronged attack against stigma. It combines elements of contemporary graphic memoirs of illness—in this case, a first-person account of living with schizophrenia and details of treatment and symptoms— with more traditional generic conventions of superhero comics, most notably, the stock character of the psychotic villain. As the title Echoes suggests, it is a repetition, both of the main character’s inherited genetic legacy of mental illness and of the tradition of horror and superhero comic narratives. And like an echo, Fialkov’s story is not simply a repetition; it is also a new event separated in time, a novel graphic reflection of how stigma continues to reverberate in representations of mental illness and how that stigma is being reshaped by a new generation of writers and artists. In this story, the men with schizophrenia are innocent: Brian’s father is not a murderer. And Brian, who has feared that he is mimicking these crimes during psychotic blackouts, is actually being framed by the police detective investigating the murders. The story ends with Brian in custody, restrained to a hospital bed, while the real killer goes free. The reader realizes that the stigma against people with mental illness has led to Brian’s unjust incarceration: because of his mental illness, no one believes him when he reveals the truth and solves the crimes.

The webcomic Asylum Squad (2014–17) by Saraƒin is another example of a

comic that revisits and revises the superhero tradition.34 Asylum Squad is a wickedly funny, clever webcomic that is inspired by the artist’s yearlong stay in a Toronto mental hospital. In the plot, as part of their experimental therapy, the characters in Asylum Squad are encouraged to come up with superhero alter-egos to help them cope: these characters include Lobotomy, Electroshock, Sedative, and Straightjacket. As she explains on her website, Saraƒin has previously been diagnosed with schizophrenia, but now she has been “properly rediagnosed as having a form of spiritual emergency.” “The schizophrenia label,” she continues, “was just what one misinformed psychiatrist called it early on in my experiences with madness.”35 This Mad Pride comic appropriates iconic psychiatric treatments while simultaneously rewriting mental illness identity. Saraƒin also disturbs the association of mental illness and criminality: patients are superheroes who satirically deploy the master’s tools.

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9.2 & 9.3  Joshua Fialkov, Echoes, 2011.

Schizophrenia, Comics, and Collaboration Autobiographical comics about schizophrenia are difficult to find, and like their nongraphic illness narrative counterparts, they are more likely to be authored by family members than by people who have been diagnosed with schizophrenia.36 Despite its title, Chester Brown’s “My Mom Was a Schizophrenic” is an extended reflection on antipsychiatry after his mother’s death but has little to do with either of their lives.37 However, Sam Sharpe’s “Mom” is notable for its detailed Psychosis Blues

description of Sharpe’s conflicted adulthood relationship with his mother, her paranoid delusions, and their estrangement: it is simultaneously charming and devastating.38 Von Allan’s autobiographically based graphic novel The Road to 162

God Knows . . . also depicts the relationship between a child and a mother with schizophrenia.39

The concluding section of this essay focuses on autobiographical schizophre-

nia texts that are collaborative—created by a person diagnosed with schizophrenia and a family member or others—and begins with the dually authored works by brothers Clem and Olivier (Liv) Martini, Bitter Medicine and The Unravelling.40 In The Unravelling, Clem—who is neurotypical, a college professor and a playwright— writes about his family’s thwarted attempts to get proper health care for their mother. His brother Liv—an artist who has schizophrenia and who lives with and helps care for their mother—illustrates the story. Clem Martini forcefully describes the absurdities and dysfunction of the health care system, and Liv Martini’s drawings viscerally evoke the pain and surreal nature of this process. In figure 9.4, a chaos of words, many indistinguishable, overlay and obscure the image of a person. The few words and phrases that we can see—“Cannan,” “Nat Turner,” “Bitter,” “Medicine,” “Thou shall not kill,” “Thou shall not lie”—are dark and ominous.

Their earlier work, Bitter Medicine, also contains Clem Martini’s pointed criti-

cisms of the Canadian mental health care system, and it is also remarkable for its depiction of male caregivers in action. Each morning, their father (now divorced and no longer living with them) would walk to his former home, entering the house as their mother left for work, where he would wait for Liv to wake up and then take breakfast with him (see fig. 9.5). The father and son would then go on their daily walk. This drawing of his father is particularly calm and comforting when juxtaposed with the unruliness of figure 9.4. Moreover, these moments of male caregiving are especially poignant since schizophrenia as an illness skews male—more men are diagnosed with schizophrenia, the onset of their illness is earlier, and their prognosis is worse.41 Bitter Medicine also describes the earlier illness and suicide of another brother, Ben, with schizophrenia, and this sense of loss adds more urgency to the family’s response to Liv’s illness, which occurs in the wake of that death.42

HOAX: Our Right to Hope, a three-part cross-media collaborative project, also

emerges out of a loss: it memorializes the life and work of creator Ravi Thornton’s brother Rob, who was diagnosed with schizophrenia and who died from suicide in 2008 at age thirty-one. The first part, HOAX: My Lonely Heart, is a musical that covers the six months before Rob’s diagnosis with schizophrenia. As Thornton explains, Rob began writing poetry “during one of his early secureunit stays and continued throughout the rest of his life.” Thornton “wanted to build something out of these beautiful pieces that had come from such a fragile and fractured mind.”43 She found his poem “HOAX,” about a doomed romantic relationship that he had with a woman named Helen, and it became a starting

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9.4  Clem Martini and Olivier Martini, The Unravelling (Calgary: Freehand Books, 2017), 26. 9.5  Clem Martini and Olivier Martini, Bitter Medicine: A Graphic Memoir of Mental Illness (Calgary: Freehand Books, 2010), 84.

point for the musical. The second part of the project, HOAX: Psychosis Blues, is a graphic novel that covers the nine years after his diagnosis up until his death.44

The graphic novel has dual narrative threads. It begins from Ravi’s point of

view at “Year One,” when she visits Rob in a secure psychiatric unit. Each section of Ravi’s story is drawn in the same style by the same artist, Leonardo Giron, and they are ordered chronologically—year one, two, three, and so on. Layered between each year of Ravi’s narrative are Rob’s poems. Each one is drawn by a different artist in a different style.

In some artists’ renderings, the words become part of the movement of the

images (see fig. 9.6). In other sections, the text is bubbled like a traditional comic, or is centered on the page, with the artwork in the background or framing the Psychosis Blues

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9.6  “Roach Psychiatry,” art by Mark Stafford. From Ravi Thornton, HOAX Psychosis Blues, 2nd ed. (Manchester: Ziggy’s Wish, 2017), 13.

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text. In figure 9.6, from Rob’s poem “Roach Psychiatry,” the text swirls around Rob: “My psychologist is scared of my emotion.” Ironically, both patient and doctor are consumed by fear. The lush imagery and highly charged emotional content of Rob’s poem is a stark contrast to the uniform and steady lines of Ravi’s linear, chronological story, which is always drawn in a consistent style by the same artist (see figs. 9.7 and 9.8). This choice to have multiple artists take on multiple poems by Rob gives Psychosis Blues greater complexity and radically changes the way the text works. It is neurodiversity in action, as we read Rob’s poems and see the multivalences of meaning that each artist brings to their visual interpretations of his words. We see the artists making deliberate and careful choices about how to represent Rob’s work, his legacy. Collectively, they celebrate and memorialize his life.

But of course, as Tom Couser’s work on disability and life writing reminds us,

this is difficult terrain. Writing about other people’s illness or disability without their consent, speaking on behalf of “vulnerable subjects,” raises serious ethical questions.45 Ultimately Rob’s experiences of the world are his and his alone. The two-page chapter “Year Five” shows Rob reminding us of this fact (see figs. 9.7 and 9.8). The first panel shows Ravi in lamplight, reading a book, while Rob is in the shadow in the background. In the second panel, Rob’s words come out of the darkness: “You don’t know.” Ravi answers, “I can imagine—a little.” Rob leans into the light, “No. You don’t know. You can’t imagine.” Ravi closes the book, turns toward him, and agrees, “Okay. I can’t.”46 The next panel closes in on Rob’s face, which intensifies the expression of his emotion. He is clearly agitated: “You think you know. But you don’t know.” Ravi doesn’t respond but remains focused on Rob and is obviously unhappy. Rob responds with a wave of words: “You think you know everything. But you don’t know anything. Nobody does. Nobody knows anything. Everybody thinks they know something. But nobody knows anything. Not even something. They don’t know. They think they know. But they don’t know.”47

Ravi gets up to leave and says one word, “Right.” Rob leans back into the

shadow and says once again: “You don’t know.” There’s a lot going on in these two pages, and those who have experience communicating with someone in an agitated psychotic state might recognize some of the strategies Ravi’s character is using here, which include finally leaving the room, in order to defuse and escape the situation. While other chapters highlight Rob’s sweet nature and his strong desire to “be a good man,” this scene shows a different range of emotion. The final panel, which shows most of Rob’s head obscured in shadow, illustrates the ultimately inscrutable nature of another person’s interior life. Rob is right. We really don’t know. But we still need to try. We don’t need to be in the room all the time, but we need to be present enough so that we are there when those moments of understanding can happen.

People diagnosed with schizophrenia deserve respect and attention, and they

deserve to be represented in nonstigmatizing ways in comics, graphic medicine, and graphic novels. This means questioning and rebelling against the tradition Psychosis Blues

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9.7  “Year Five,” art by Leornado Giron. From Ravi Thornton, HOAX Psychosis Blues, 2nd ed. (Manchester: Ziggy’s Wish, 2017), 53.

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9.8  “Year Five,” art by Leornado Giron. From Ravi Thornton, HOAX Psychosis Blues, 2nd ed. (Manchester: Ziggy’s Wish, 2017), 54.

Psychosis Blues

of criminal madness in superhero comics and embracing works like Fialkov’s Echoes and Saraƒin’s Asylum Squad, which change and disrupt the dynamics of that tradition. It also means acknowledging the centrality of mental illness expe168

rience in the genre of auto/biographical comics and supporting and amplifying those efforts, such as the Maritinis’ collaboration and Thornton’s cross-media projects, that do the hard work of building community among the neurotypical and the neurodiverse.

Notes 1. This is an often repeated mantra in disability studies. For a brief history of the phrase, see James I. Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment (Berkeley: University of California Press, 2000), 3–4. 2. Elyn R. Saks, The Center Cannot Hold: My Journey Through Madness (New York: Hyperion, 2007). In the field of disability studies, supercrip often refers dismissively to a narrative about exceptional individuals who overcome their disabilities. These types of supercrip narratives tend to erase the political and social dimensions of disability oppression and repackage the disability experience as something that is more easily consumed as an inspirational story by the nondisabled public. But, following Sami Schalk’s call to reevaluate the term with more nuance, I use it here with respect for Saks, and with the understanding that the phrase psychiatric supercrip radically repositions cultural stereotypes about supercrips by linking the term to people diagnosed with schizophrenia. See Sami Schalk, “Reevaluating the Supercrip,” Journal of Literary and Cultural Disability Studies 10, no. 1 (2016): 84. See also Saks’s TED Talk, which has been viewed more than three million times, “A Tale of Mental Illness—From the Inside,” TED Talks, 2012, https://‌www‌.ted ‌.com‌/talks‌/elyn‌_saks‌_seeing‌_mental‌_illness. 3. On the history of the schizophrenia diagnosis, see Angela Woods, The Sublime Object of Psychiatry: Schizophrenia in Clinical and Cultural Theory (New York: Oxford University Press, 2011). 4. Thomas Szasz, The Myth of Mental Illness: Foundations of a Theory of Personal Conduct (New York: Hoeber-Harper, 1961), and S. Guloksuz and J. van Os, “The Slow Death of the Concept of Schizophrenia and the Painful Birth of the Psychosis Spectrum,” Psychological Medicine 48, no. 2 (January 2018): 229–44. 5. Barbara J. King, “‘Disabled’: Just #SayTheWord,” NPR, February 25, 2016, https://‌www‌ .npr‌.org‌/sections‌/13‌.7‌/2016‌/02‌/25‌/468073722‌ /disabled‌‑just‌‑saytheword. 6. Neurodiversity is a term most closely associated with autism self-advocacy, which positions autism as a minority identity

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category that should be celebrated and protected, rather than an undesirable medical condition in need of a cure. See Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (New York: Avery, 2015), 16, 450–54. This concept holds potential emancipatory applications for people diagnosed with mental illnesses as well. See also Melanie Yergeau’s recent work on “neurological queerness” in Authoring Autism: On Rhetoric and Neurological Queerness (Durham: Duke University Press, 2018). For the argument that superhero comics “should reconsider how they depict mental health issues to enhance their efforts at including diversity,” see John Goodwin and Izzat Tajjudin, “‘What Do You Think I Am? Crazy?’ The Joker and Stigmatizing Representations of Mental Ill-Health,” Journal of Popular Culture 49, no. 2 (2016): 386. 7. Justin Green, Binky Brown Meets the Holy Virgin Mary (1972; reprint with introduction by Art Spiegelman and afterword by Justin Green, San Francisco: McSweeney’s Books, 2009), and Darryl Cunningham, Psychiatric Tales: Eleven Graphic Stories About Mental Illness (New York: Bloomsbury, 2011). 8. Clem Martini and Olivier Martini, Bitter Medicine: A Graphic Memoir of Mental Illness (Calgary: Freehand Books, 2010); Clem Martini and Olivier Martini, The Unravelling (Calgary: Freehand Books, 2017); Ravi Thornton, HOAX Psychosis Blues, 2nd ed. (Manchester: Ziggy’s Wish, 2017). 9. Dennis O’Neil and Irv Novick, Batman #258 (Burbank, Calif.: DC Comics, 1974), 7. 10. Ibid. 11. Marc Singer, “‘A Serious House on Serious Earth’: Rehabilitating Arkham Asylum,” International Journal of Comic Art 8, no. 2 (Fall 2006): 278. 12. Deneb Kozikoski Valereto, “Philosophy in the Fairground: Thoughts on Madness and Madness in Thought in The Killing Joke,” Studies in Comics 2, no. 1 (2011): 69–80, and Goodwin and Tajjudin, “‘What Do You Think I Am?’” 13. Marc Siegel, “Was the Las Vegas Shooter Mentally Ill?,” Fox News, October 8, 2017, http://‌www‌.foxnews‌.com‌/opinion‌/2017‌/10‌/08‌ /was‌‑las‌‑vegas‌‑shooter‌‑mentally‌‑ill.html, and

“Investigators Suspect the Las Vegas Gunman Had Undiagnosed Mental Illness,” ABC News, October 8, 2017, http://‌abcnews‌.go‌.com‌/WNT‌ /video‌/investigators‌‑suspect‌‑las‌‑vegas‌‑gun man‌‑undiagnosed‌‑mental‌‑illness‌‑50359268. 14. Jonathan Metzl writes and speaks frequently on the false association of gun violence with mental illness (www.jonathan metzl.com). See also Jonathan M. Metzl and Kenneth T. MacLeish, “Mental Illness, Mass Shootings, and the Politics of American Firearms,” American Journal of Public Health 105, no. 2 (2015): 240–49. 15. U. Hiroeh et al., “Death by Homicide, Suicide, and Other Unnatural Causes in People with Mental Illness: A Population-Based Study,” Lancet 358 (2001): 2110–12. 16. Steve Almasy and Jamiel Lynch, “College Student Who Had Distressing Behavior, Rifles Will Be Deported for Visa Violation,” CNN, April 1, 2018, https://‌www‌.cnn‌.com‌/2018‌/03‌/31‌/us‌ /florida‌‑chinese‌‑student‌‑guns‌‑deported‌/index ‌.html. 17. Ibid. 18. Green, Binky Brown. 19. Charles Hatfield, Alternative Comics: An Emerging Literature (Jackson: University Press of Mississippi, 2005), 131. In “Autography’s Biography, 1972–2007” (Biography 31, no. 1 [Winter 2008]: 1–26), Jared Gardner cautions against this common tendency to portray Green as the sole progenitor of autobiographical comics. Gardner puts the genre’s development in a larger cultural context that includes other contemporary artists in the United States, such as Aline Kominsky-Crumb, Harvey Pekar, Art Spiegelman, and Phoebe Gloeckner, as well as artists working in France and Japan (14–20). 20. Introduction to the 2009 reprint of Spiegelman, Binky Brown. 21. The phrase graphic pathography comes from Michael J. Green and Kimberly R. Myers, “Graphic Medicine: Use of Comics in Medical Education and Patient Care,” British Medical Journal 340 (March 2010): 574. 22. Green, Binky Brown, inside front cover (emphasis original). 23. Ibid., inside back cover. 24. Christina Maria Koch, “‘When You Have No Voice, You Don’t Exist’? Envisioning Disability in David Small’s Stitches,” in Disability in Comic Books and Graphic Narratives, ed. Chris Foss, Jonathan Gray, and Zach Whalen (New York: Palgrave Macmillan, 2016), 29. 25. David Small, Stitches: A Memoir (New York: Norton, 2009), and John Porcellino, The Hospital Suite (New York: Drawn & Quarterly, 2014). 26. Allie Brosh, Hyperbole and a Half (New York: Simon and Schuster, 2013); Ian Williams, The Bad Doctor: The Troubled Life and Times of Dr. Iwan James (University Park: Pennsylvania

State University Press, 2015); Alison Bechdel, Fun Home: A Family Tragicomic (Boston: Houghton Mifflin, 2006). The reviews on the Graphic Medicine website (www.graphicmedicine.org), especially those authored by Ian Williams, were indispensable to my research in this essay. 27. Ellen Forney, Marbles: Mania, Depression, Michelangelo, and Me (New York: Gotham Books, 2012); Madison Clell, Cuckoo (Portland, Oreg.: Green Door Studios, 2002); Brick (John Stuart Clark), Depresso; or, How I Learned to Stop Worrying and Embrace Being Bonkers! (London: Knockabout, 2010); Paul Hornschemeier, Mother, Come Home (Milwaukie, Oreg.: Dark Horse Books, 2003). Unlike the other titles in this list, Hornschemeier’s work is not explicitly autobiographical but takes the form of a fictional memoir. For a disability studies reading of trauma in this work, see Jessica Gross, “It Doesn’t Add Up: Mental Illness in Paul Hornschemeier’s Mother Come Home,” in Literatures of Madness: Disability Studies and Mental Health, ed. Elizabeth J. Donaldson (New York: Palgrave Macmillan, 2018), 215–33. 28. Nate Powell, Swallow Me Whole (Marietta, Ga.: Top Shelf Productions, 2008), and Sarah Thaller, “Comics, Adolescents, and the Language of Mental Illness: David Heatley’s ‘Overpeck’ and Nate Powell’s Swallow Me Whole,” in Graphic Novels for Children and Young Adults: A Collection of Critical Essays, ed. Michelle Ann Abate and Gwen Athene Tarbox (Jackson: University Press of Mississippi, 2017), 48. 29. Cunningham, Psychiatric Tales. 30. See also Christine Deneweth’s wonderful first-person polemic/educational series of webcomics about schizophrenia that appear on Everyday Feminism: “Guide for Schizophrenia,” November 26, 2016, https://‌everydayfeminism‌ .com‌/2016‌/11‌/guide‌‑for‌‑schizophrenia; My Mental Disorder Is My Identity—So Stop Policing My Language Choices,” November 15, 2015, https://‌everydayfeminism‌.com‌/2015‌/11‌/telling ‌‑people‌‑how‌‑to‌‑identify; and “Schizophrenia: Insider’s Point of View,” July 1, 2015, https:// ‌everydayfeminism‌.com‌/2015‌/07‌/insider‌‑view ‌‑schizophrenia. 31. Joshua Hale Fialkov and Rahsan Ekedal, Echoes (Los Angeles: Top Cow, 2011). 32. The film Clean, Shaven (1993), which also has a main character with schizophrenia, works with the same dynamic to build suspense. 33. On “crip time,” see Ellen Samuels, “Six Ways of Looking at Crip Time,” Disability Studies Quarterly 37, no. 3 (2017), https://‌dsq‌‑sds‌.org /‌ article‌/view‌/5824‌/4684. 34. Saraƒin, Asylum Squad: A Mad Pride Comic (2014–17), http://‌asylumsquad‌.ca‌/?comic‌ =‌page‌‑1#comic‌‑area.

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35. See the “About” section, Saraƒin, Asylum Squad. For another example of the therapeutic use of comics and the superhero in mental health care, see also Rachel Tolfree, “We Could Be Heroes: How Film and Comic Book Heroes Helped a Support Group to Reconnect with Their Gifts,” International Journal of Narrative Therapy and Community Work 4 (2016): 26–31. 36. It is important to note here that the power dynamics in biographical writing by family members is tricky, as Michael Bérubé acknowledges in Life as Jamie Knows It: An Exceptional Child Grows Up (Boston: Beacon Press, 2016), the follow-up to Life as We Know It: A Father, a Family, and an Exceptional Child (New York: Vintage Books, 1998), his story about handling the challenges of raising his son Jamie, who was born with Down syndrome. In this second book, Bérubé writes about Jamie, but now that he is an adult, he also consults him “extensively” and edits his writing when Jamie objects or corrects him (206). Similarly, in Reasonable People: A Memoir of Autism and Adoption (New York: Other Press, 2007), Ralph James Savarese deliberates about whether it is “reasonable” to invade his son D.J.’s privacy in order to tell his story, one that contains intimate details of debilitating childhood trauma (xxix). Savarese offers him veto power over the book’s publication, which he grants. As the story develops, D.J. becomes older and more adept at communicating through language, and it is fitting, therefore, that the book ends with a chapter written by D.J.: “It’s My Story!” (432–42). 37. Chester Brown’s “My Mom Was a Schizophrenic” (1995; reprinted in The Little Man: Short Strips, 1980–1995 [Montreal: Drawn & Quarterly, 1998], 152–57, 171–72). Brown briefly discusses his mother’s illness and death in a psychiatric institution in I Never Liked You (1994; reprint, Montreal: Drawn & Quarterly, 2011), 158–64. 38. Sam Sharpe, “Mom” (Viewotron 2 [Oakland, Calif.: Radiator Comics, 2015]). Sharpe is in the process of developing this work into a longer graphic memoir. 39. Von Allan, The Road to God Knows . . . (Ottawa: Von Allan Studio, 2009). Redrawn versions of Von Allan’s original artwork and his story are featured in I Am Still Your Child (2017), a documentary about children whose parents have mental illness. Von Allan discusses the autobiographical elements of his comic on his website; see “On Getting Stronger,” Von Allan Studio, https://‌www‌.vonallan‌.com‌/2017‌/09 ‌/on‌‑getting‌‑stronger.html. 40. Martini and Martini, Bitter Medicine, and Martini and Martini, The Unravelling. Una’s comic On Sanity: One Day in Two Lives (Leeds, U.K.: Becoming Press, 2016) is a similar collaborative project: it tells the story of a mother’s psychotic episode and hospitalization from

Pathographics

both the mother’s and the daughter’s perspectives. I am grateful to Nina Schmidt for bringing Una’s work to my attention. 41. See A. Aleman, R. S. Kahn, and J. P. Selten, “Sex Differences in the Risk of Schizophrenia: Evidence from Meta-Analysis,” Archives of General Psychiatry 60 (2003): 565–71 (more men diagnosed), and W. G. Iacono and M. Beiser, “Are Males More Likely Than Females to Develop Schizophrenia?” American Journal of Psychiatry 149 (1992): 1070–74 (more men diagnosed); M. C., Angermeyer and L. Kühn, “Gender Differences in Age at Onset of Schizophrenia: An Overview,” European Archives of Psychiatry and Neurological Sciences 237 (1988): 351–64. (earlier onset for men); and A. Leung and P. Chue, “Sex Differences in Schizophrenia, a Review of the Literature,” Acta Psychiatrica Scandinavica Supplementum 401 (2000): 3–38 (worse prognosis for men). 42. Schizophrenia has a strong genetic component, which drives some of the cuttingedge research today, such as the transgenic DISC-1 mouse model of schizophrenia, which had its roots in a study of the illness in four generations of a Scottish family. See Mandy Johnstone et al., “DISC1 in Schizophrenia: Genetic Mouse Models and Human Genomic Imaging,” Schizophrenia Bulletin 37, no. 1 (January 2011): 14–20. 43. Ravi Thornton, “Writing HOAX My Lonely Heart / HOAX Psychosis Blues,” guest Blog, A Younger Theatre, June 5, 2014, https://‌ayounger theatre‌.com‌/guest‌‑blog‌‑writing‌‑hoax‌‑lonely‌ ‑heart‌‑hoax‌‑psychosis‌‑blues. 44. The three parts of the HOAX project work together. The experience centers on the play, which is a serious musical about a significant romantic relationship in Rob’s life. Once a ticket for the staged musical is purchased, the audience member receives a link to an interactive, narrative mobile app. After attending the staged musical, the audience members leave with a copy of the graphic novel and with a code to access a second (and ultimately a third) stage of the narrative app. This app, which combines storytelling and comics, is also an elective scientific research study (conducted via the Psychosis Research Unit, affiliated with the University of Manchester) that measures the effects of viewing the play and learning about Rob’s life on audience members’ mental health awareness. 45. See G. Thomas Couser, Vulnerable Subjects: Ethics and Life Writing (Ithaca: Cornell University Press, 2004) and note 36. 46. I am indebted to Irmela Marei KrügerFürhoff and Susan Squier for noting that in this last panel on page 53, there is a remarkable parallelism or correspondence between the angle of the lamp post, of Ravi’s face, and of Rob. Even though the panel itself shows the

room at a tilt, Rob and his sister’s face are in sync. It is a brief moment of utopian agreement that will fall apart in the next section. Moreover, since this is the last panel on the

page, the need to look forward to the top of the next page produces drama and suspense. 47. Thornton, HOAX, 54. 171

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Schizophrenia?” American Journal of Psychiatry 149 (1992): 1070–74. Johnstone, Mandy, Pippa A. Thomson, Jeremy Hall, Andrew M. McIntosh, Stephen M. Lawrie, and David J. Porteous. “DISC1 in Schizophrenia: Genetic Mouse Models and Human Genomic Imaging.” Schizophrenia Bulletin 37, no. 1 (January 2011): 14–20. King, Barbara J. “‘Disabled’: Just #SayTheWord.” NPR, February 25, 2016. https://www ‌.npr‌.org‌/sections‌/13‌.7‌/2016‌/02‌/25‌/468 073722‌/disabled‌‑just‌‑saytheword. Koch, Christina Maria. “‘When You Have No Voice, You Don’t Exist’? Envisioning Disability in David Small’s Stitches.” In Disability in Comic Books and Graphic Narratives, edited by Chris Foss, Jonathan Gray, and Zach Whalen, 29–43. New York: Palgrave Macmillan, 2016. Leung, A., and P. Chue. “Sex Differences in Schizophrenia, a Review of the Literature.” Acta Psychiatrica Scandinavica Supplementum 401 (2000): 3–38. Martini, Clem, and Olivier Martini. Bitter Medicine: A Graphic Memoir of Mental Illness. Calgary: Freehand Books, 2010. ———. The Unravelling. Calgary: Freehand Books, 2017. Metzl, Jonathan M., and Kenneth T. MacLeish. “Mental Illness, Mass Shootings, and the Politics of American Firearms.” American Journal of Public Health 105, no. 2 (2015): 240–49. O’Neil, Dennis, and Irv Novick. Batman #258. Burbank, Calif.: DC Comics, 1974. Porcellino, John. The Hospital Suite. New York: Drawn & Quarterly, 2014. Powell, Nate. Swallow Me Whole. Marietta, Ga.: Top Shelf Productions, 2008. Saks, Elyn R. The Center Cannot Hold: My Journey Through Madness. New York: Hyperion, 2007. ———. “A Tale of Mental Illness—From the Inside.” TED Talks, 2012. https://www ‌.ted‌.com‌/talks‌/elyn‌_saks‌_seeing ‌_mental‌_illness. Samuels, Ellen. “Six Ways of Looking at Crip Time.” Disability Studies Quarterly 37, no. 3 (2017). http://‌dsq‑sds‌.org‌/article‌/view‌ /5824‌/4684. Saraƒin. Asylum Squad: A Mad Pride Comic. 2014– 17. http://lumsquad‌.ca‌/?comic‌=‌‑1#comic ‌‑area. Savarese, Ralph James. Reasonable People: A Memoir of Autism and Adoption. New York: Other Press, 2007. Schalk, Sami. “Reevaluating the Supercrip.” Journal of Literary and Cultural Disability Studies 10, no. 1 (2016): 71–86.

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Sharpe, Sam. “Mom.” Viewotron 2. Oakland, Calif.: Radiator Comics, 2015. Siegel, Marc. “Was the Las Vegas Shooter Mentally Ill?” Fox News, October 8, 2017. http://‌www.foxnews‌.com‌/opinion ‌/2017‌/10‌/08‌/was‌‑las‌‑vegas‌‑shooter‌ ‑mentally‌‑ill.html. Silberman, Steve. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. New York: Avery, 2015. Singer, Marc. “‘A Serious House on Serious Earth’: Rehabilitating Arkham Asylum.” International Journal of Comic Art 8, no. 2 (Fall 2006): 269–82. Small, David. Stitches: A Memoir. New York: Norton, 2009. Spiegelman, Art. Introduction to Green, Binky Brown Meets the Holy Virgin Mary, n.p. Szasz, Thomas. The Myth of Mental Illness: Foundations of a Theory of Personal Conduct. New York: Hoeber-Harper, 1961. Thaller, Sarah. “Comics, Adolescents, and the Language of Mental Illness: David Heatley’s ‘Overpeck’ and Nate Powell’s Swallow Me Whole.” In Graphic Novels for Children and Young Adults: A Collection of Critical Essays, edited by Michelle Ann Abate and Gwen Athene Tarbox, 45–58. Jackson: University Press of Mississippi, 2017. Thornton, Ravi. HOAX Psychosis Blues. 2nd ed. Manchester: Ziggy’s Wish, 2017. ———. “Writing HOAX My Lonely Heart / HOAX Psychosis Blues.” Guest blog. A Younger Theatre, June 5, 2014. https:// ayoungertheatre‌.com‌/guest‌‑blog‌‑writing ‌‑hoax‌‑lonely‌‑heart‌‑hoax‌‑psychosis‌‑blues. Tolfree, Rachel. “We Could Be Heroes: How Film and Comic Book Heroes Helped a Support Group to Reconnect with Their Gifts.” International Journal of Narrative Therapy and Community Work 4 (2016): 26–31. Una. On Sanity: One Day in Two Lives. Leeds, U.K.: Becoming Press, 2016. Valereto, Deneb Kozikoski. “Philosophy in the Fairground: Thoughts on Madness and Madness in Thought in The Killing Joke.” Studies in Comics 2, no. 1 (2011): 69–80. Williams, Ian. The Bad Doctor: The Troubled Life and Times of Dr. Iwan James. University Park: Pennsylvania State University Press, 2015. Woods, Angela. The Sublime Object of Psychiatry: Schizophrenia in Clinical and Cultural Theory. New York: Oxford University Press, 2011. Yergeau, Melanie. Authoring Autism: On Rhetoric and Neurological Queerness. Durham: Duke University Press, 2018.

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Interview with stef lenk on The Quickening Irmela Marei Krüger-Fürhoff and Susan Merrill Squier

Susan M. Squier: You are an artist of (predominantly wordless) comics. You are also a trained medical illustrator and member of a university research team that analyses comics. In your work as a comic artist, do you feel that anatomical expertise, scholarly inquiry, and artistic creativity interact? To what extent do they cross-pollinate or challenge each other?

stef lenk: I believe all three disciplines—art, science, and academia—are

necessary, and they all nourish each other. While science plays a role in the development of new forms of medical treatment, care, and prophylaxis, artists’ ability (and willingness) to examine and draw on individual experience is crucial in generating empathy, comfort, and dialogue with others, which can also lead to new forms of treatment and caring for ourselves and those around us. Academic research rounds this all out rather nicely, and getting to be involved in all three disciplines is just more proof of my blessedly rich and intellectually luxurious life! Looking into graphic narratives means I get to read extensively, to compare and contrast the work that is out there (a.k.a. the “data,” which in graphic illness narratives comprises both medical knowledge and lived/cultural experience), and to try to draw conclusions on what these narratives reflect about the lived experience of being human. It’s like standing at the proverbial crossroads of science and culture, observing the explorations both inward and outward and then doing my best to record and share with others what I think they are trying to tell us.

Turning to medical illustration more specifically, that practice is about creat-

ing images to guide us through the dizzying complexity of information that is the human body. Like a researcher, the medical illustrator also has the task of collecting “data” (via surgical observation and/or anatomical dissections, textbooks, and medical professionals) and assimilating it into what is in essence a

visual summary of some aspect of our physiology, pathology, or (sometimes even) mental state: whatever knowledge needs to be shared with peers or public.

I would contend that medical illustrators and academics—both in the sciences

and in the humanities—embark upon similar creative acts. “Creative act” in this context refers to the individual choices they make in the formulation of questions, the ways in which they carry on their research in accordance with the demands of their disciplines, and how they frame and share those results and ideas.

With regards to creative practice, I subscribe to Andrew Simonet’s assertion

that artists are also a kind of scientist in the sense that they both create new knowledge and ways to convey it to a public. According to Simonet, artists, scientists, and academics begin work with something they do not know, a question which needs answering, although these questions might be different in nature. Simonet calls the results of an artist’s research “cultural seeds,” a way of seeing which we pass on to others and which may come to be crucial for us all in the future. And since some of the largest problems the world faces today are problems of thought and culture, the need for art, says Simonet, has never been more dire.1 I agree with this completely.

Irmela Marei Krüger-Fürhoff: While your main protagonist starts as a realis-

tic medical illustration, it gradually develops into a cartoon character that could be seen as resembling a young child or even an ageless allegory of youth, a putto. Can you say something about why you make the turn from realism and whether you intend either (or both) of those later renditions of the character?

s. l.: I find that the deeper we look into our lives, the more surreal (or “unreal”)

they get. I liked this idea of a traditional “realistic” rendition of the stages of birth, which slowly, at first almost imperceptibly, morphs into a highly stylized (cartoon) and supernatural narrative between human and nonhuman, the latter of which eventually becomes a character with its own agency. That both need to coexist and make peace with each other is something I believe to be relevant to discussions about mental illness, since so much of the illness’s manifestations involve ghosts and demons which are so often no longer a part of a client’s actual physical reality. This said, the ultrarealistic style of the drawings was way more evident in the first final version of the comic; those works got stripped down for the sake of homogeneity to the simplified drawings in the second final.

The resemblance of the main character to a putto was pure happenstance

but is for me a lovely inference. Puttos make me think not just of the allegory of youth but of the Renaissance itself, both the art movement and the actual definition of the word: the very concept of rebirth is definitely an optimistic outlook for anyone suffering from mental illness. A fresh start, what more could one ask for? The agelessness of the character was intentional, as was the gender-neutral depiction of the child. One reader of the story in a workshop I gave on wordless comics was actually convinced the child was a boy, clarifying her assumption by explaining she has two sons. As someone perpetually concerned with possibly Interview with stef lenk

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sliding into solipsistic oblivion in my work, I found this a reassurance that readers do indeed move beyond the autobiographical basis of stories they read to find their own meanings in the images. 180



I. M. K.-F.: What were your main aesthetic choices while developing the comic’s

protagonists?

s. l.: Overall, I find myself time and again returning to human-based/anatom-

ical subject matter, maybe in part because of my training, although I have always had a deep love and fascination for the beauty and complexity of the human body. Neonatal drawings also recur time and time again in my artworks, which I find somewhat ironic given a lifelong complete lack of interest in having children myself!

My comics often start through brainstorming with language (particular words

that “encapsulate” an idea I’d like to build on) before I even grab hold of a pencil. I find words and language very inspiring, although there is often the danger of getting caught up in overintellectualizing at the expense of aesthetic spontaneity and belaboring my work to death. With The Quickening, the mind maps I did about themes of mental illness led to visual extrapolations of the in-utero conflict between placenta and fetus, which I thought was a great metaphor to build on. My need to make the conflict feasible—inasmuch as a metamorphosing placenta and a monstrous brain jousting with a small child could be deemed feasible— determined most of the subsequent content of the illustrated panels.

An earlier draft of the comic was rendered with pencil and watercolor in a

meticulously detailed style: my usual modus operandi and definitely influenced by my training as a medical illustrator. Something about the hypernaturalism of it dissatisfied me, though, and I ended up redoing the whole comic in reduced iconic-style pen drawings which I then scanned and colored digitally. I was interested in considerations of what Scott McCloud calls “amplification through simplification,” where “by stripping down an image to its essential “meaning” an artist can amplify that meaning in a way that realistic art can’t.”2 The simplified illustrations made them into more of a visual language for me, the images becoming symbols with cumulative and implicit meaning in a larger narrative rather than individual paintings in their own right.

As I got to the stage of laying out the illustrations, there was a lot of consid-

eration of how/where to place all the panels in relation to each other. The comic was created in two formats: a twenty-four-page booklet and an A0 size broadsheet (for inclusion in the exhibition Sick! Reclaiming Illness Through Comics / Kranksein im Comic held at the Berlin Museum of Medical History at the Charité in 2017– 18).3 The booklet format was self-determining (one panel per page, which I like best, because it forces the reader to confront and ponder each image individually before turning the pages). Negotiating the layout of the broadsheet involved more consideration regarding which and how many panels would fill each row of the comic, both for aesthetic effect and to determine the pacing with which the comic is read.

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S. M. S.: While comics frequently rely on panels to establish the passage

of time as well as to direct the reader’s eye, your use of panels seems to have thematic significance as well.

s. l.: I tend to decide on and then construct each panel as an artwork in and

of itself, so the implicit aim for many of my works is that each image/panel could act as a stand-alone vignette (in this case, each one representing temporal stages of birth, conflict, and resolution) but could also cumulatively comprise a larger narrative. The simplified drawings in this comic somewhat contradict this, though, which is new for me.

I would say the panel frames have thematic significance, though: they repre-

sent the boundaries of the womb, of course, making the “hole” the child escapes through a conscious play with the format. Implied is a sort of “falling out of the womb” or a kind of (re)birth, in this case into a frameless expanse of white, which to me implies a “new beginning” much like a blank sheet of white paper at the beginning of the drawing process.

S. M. S.: One of the most familiar concepts in comics studies is “closure.”

Abel and Madden quip, “Closure is what the reader does,” while Scott McCloud observes, “If visual iconography is the vocabulary of comics, closure is its grammar. . . . In a very real sense, comics IS closure!”4 Do you share those understandings of closure? How does closure operate in The Quickening? Is there more than one kind of closure present there?

s. l.: I find McCloud’s definition of closure a bit over the top, to be honest,

though I’ve also never been very astute (or interested) in pinpointing and/or explaining formal structures of grammar in word or image. I think the “rules” of grammar are much like learning to draw; once you’ve got the basics down, both (drawing and grammar) become intuitive rather than conscious acts, and the same goes for closure. I think the closure that comes across in The Quickening came about more in that purgatorial stage of creation where the story began to unravel on its own, to develop its own logic (a.k.a. the natural course of a birth involves the severing of the umbilical cord and an exit from the womb, but the actual story emerges when the placenta exits the womb as well, and closure becomes the “logical” way the character finds to deal with this problem). Though the artist’s logic might not “match” the logic of the reader, I think that is what makes reading other peoples’ works so exciting.

I. M. K.-F.: Your comic focuses on the interaction between mother and child,

placenta and fetus. One interpretation of it sees it drawing on the potential inheritance or (epi-)genetic transmission of depression and anxiety as well as of creativity—that is, art-nurtured resilience. Does that interpretation work for you?

s. l.: Yes, I think that is an accurate (and flattering!) interpretation of the work. The

placenta is meant as a direct visual incarnation of inherited aspects of the mother. Its metamorphosis into a brain navigates the reader into pondering potential mental facets of this inheritance. As the brain becomes a creature with emotional agency Interview with stef lenk

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in and of itself, it becomes both a companion in the child’s solitary in-utero world as well as a potential adversary fighting for space, attention, and authority. This to my mind reflects well the overwhelming strength of mental illness. The girl and 182

the brain first come into conflict when she tries to escape/leave it behind instead of confronting it, reckoning with it directly, learning to live with it.

I believe that both art and creativity lie at the center of all human resilience.

They are traits (in their countless different guises) that we all have and that we all have exclusive access to and can reshape endlessly according to our whims and the unique realities of our individual lives. And though we don’t always live up to our own perceptions of ourselves, it is precisely when we behave in ways contrary to these perceptions that the question of cause and effect becomes so crucial. Genetic inheritance and medicine act as an important point of departure in that investigation. Having issues with depression and anxiety myself, it confounds me when I repeatedly behave or react in a way not in accord with how I would like to, but I nonetheless seem powerless to stop. That momentary lack of autonomy is alarming. However, in a fully contradictory way, there is also a personal loss of autonomy in the act of artistic creation—there always comes a moment in creating comics where you are no longer in control, where the narrative and the images begin to tell you (so to speak) what’s going to happen, how it is going to be, how things are going to turn out in the story. And those moments to me, unlike those in real life where (I feel like) I’m acting insane, are consistently and profoundly liberating.

I. M. K.-F.: The comic’s title draws on the mother’s experience of the first

fetal movements, which she has the right to announce or to hide. You seem to redefine this (historical) term to indicate not the mother’s empowerment but the child’s. Can you tell us more about the ways in which both the title and the images reframe the notion of quickening to refer to the child’s new experience of agency and autonomy?

s. l.: I’m very fond of using single-word titles for my comics. This turns each

comic for me into a kind of narrative “redefinition” of a specially chosen word. Searching for a title to The Quickening felt like this multilayered exploration of what the crux of the narrative was actually about. I initially chose the title The Beginning to signify both the beginning of a life and the beginning of a series of graphic narratives on themes of mental illness. When the idea of genetic inheritance became the focus of the narrative, the name was changed to The Inheritance. The title was then changed again to The Quickening, referring to the stage in a pregnancy when the first movements of the fetus become palpable: when the fetus first shows signs of life that may be felt by the mother. The term quickening has fallen into disuse but once referred more specifically to the stage after conception where a mother could announce her pregnancy or choose to keep it secret: before the invention of x-rays, the mother would first know definitively that she was pregnant when the fetus had begun to stir inside her womb, something which would not be visually apparent to those around her. This definition

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appealed to me as almost vaguely subversive, not just for the status of empowerment it lends to the mother, but also for the associated secrecy, which resonates with the stigmatized nature of mental illness—the secret no one wants to reveal about themselves—the secret that, if neglected, can grow up and unwittingly eclipse its owner’s own freedom. In The Quickening, as the story unfolds through images, the child’s movements evolve from the stirrings of an embryo inside the womb to a full-blown skirmish: a tiny revolution against being trapped inside there followed by a subsequent escape. And it is only when the brain and the child are both outside the womb that they find themselves on an “even playing field,” as it were, two individuals with their own agency, interacting with each other to resolve a conflict.

S. M. S.: The four-page format for your comic that we are printing here (rather

than the twenty-four page booklet) did not originally include a title or a title panel, although we have added one for clarity.) Why did you originally choose to omit a title for your comic? What would excluding the title have offered the reader?

s. l.: The exclusion of the title / title panel in the four-page version of the

comic was purely for aesthetic reasons. Six panels per page created an even rhythm spanning the four pages, which I did not want cluttered or interfered with by text. I also enjoy the idea of giving the readers the option to encounter the pictures separately in and of themselves. They can choose to figure out the relationship between title and comic or abandon the title altogether and arrive at their own cognitive understanding of what is going on without the influence of “linguistic signposts.”

S. M. S.: Both contention (or conflict) and community seem to us to play crucial

roles in The Quickening. Would you agree? How would you describe the contention or conflict? What community do you see emerging, if there is one?

s. l.: The conflict is, of course, that between the child and the (epi-)genetically

inherited traits embodied by the placenta, and the end of the comic represents a reconciliation of sorts between “inner” and “outer” worlds, and possibly also a generational reconciliation if one considers the origins of placenta and child as both being from the (invisible) mother.

I don’t know if I see a community emerging in this story per se (the comic

is very much a story of one individual’s struggle with inner conflict), although I believe a microcommunity is created instantly anytime a reader decides to engage with an artist’s work.

I. M. K.-F.: In the 1970s and 80s, feminist scholarship on representations of

pregnancy argued that the elision of the mother is part of a general trend to erase women’s agency. It strikes us that your comic might be read as an artistic reply to these debates, since it focuses on a (female) child who gains agency and power at the expense of her mother’s. At the same time, the girl protagonist accepts the artistic tool from the maternal placenta-brain and integrates this organ into her own body. Does your comic balance individual liberation and a cycle of maternalInterview with stef lenk

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fetal transmission that might even span multiple generations? After all, the last (frameless) panel echoes the first one. 184

s. l.: Although I agree that visually representing a pregnancy without includ-

ing the mother’s body is highly problematic, it was not intentional to exclude the mother from the narrative, so much as to create a story about one individual’s struggle with herself. Of course, the “self” always implies genetically inherited traits and personal relationships, and how they have shaped any given being, but I saw the relationship between child and mother as something not at the forefront of the story. So in the end I’m not sure if the girl’s gaining agency and power is at the expense of the mother so much as something which develops independent of the mother, given her absence throughout the story. Perhaps autonomy can only really begin to develop once a child finds themselves alone?

In earlier drafts of the comic, I had drawn a body surrounding the womb, a

close-up of the abdominal region with (the mother’s) hands covering up the area of the womb (protecting it? hiding it?). This disappeared in subsequent sketches as the narrative became exclusively focused on the child’s inner struggles with genetic inheritance and her learning to navigate the powers and dangers of creativity.

I wanted the shape and size of the navel in the last panel to echo exactly the

shape of the embryo in the first panel in order to reflect this idea of a recurring pattern in the conflict, a phenomenon that comes full circle and could repeat itself for generations to come. The integration of the placenta-brain into the child’s own womb does not necessarily signify the end of her story but potentially the beginning of a new one.

I. M. K.-F.: Your decision to introduce a pencil into your comic also empha-

sizes a turn toward the allegorical. How does the pencil create an escape route for the character? Or for you?

s. l.: The pencil is for me a rather simple metaphor for creativity. In this story,

it is a tool of creation (drawing) as well as destruction (used to “burst” the brain toward the end of the comic). Most critical to me, however, is its origins (in the comic) as the umbilical cord—the direct and physical attachment between fetus and placenta, mother and child. It was important to me to maintain a creative connection between both characters—the pencil is born of both of them after all, which is inevitable and wonderful. Their mutual custody of it, however, is an uneasy alliance, particularly when it becomes clear that the pencil can destroy as quickly and effectively as it can create. The next question, of course, becomes: How much of the pencil is inherited from the mother and how much is generated by the child? And how do both come to terms with the inevitable separation and the mutual need for this creative autonomy/power? With regards to my own relationship with the humble pencil, it has acted as the simplest and most perfect escape route from the tireless workings of my own brain for years.

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S. M. S.: Given the power of the pencil in your comic, it is striking that you

confine it to drawing rather than writing words. Can you say a bit more about why you chose to create wordless comics?

s. l.: I’m enchanted by this idea of allowing my characters to return (as it

were) to a time “before language.” There exists this point in childhood—before the complicated linguistic ways we use as adults to try to share our experiences start largely taking over—where nothing is formally defined and everything is fascinating. I think there is a lot of merit in attempting to return to that frame of mind, to leave preconceptions inadvertently concretized through language at the door, and trying to again experience what is actually in front of us—an art of seeing which I feel can galvanize a rich understanding in reading visual narratives.

I also believe that the individual mark of the artist (drawing style, line, etc.)

holds an often untapped capacity for emotional communication which is as strong as, if not stronger than, words. For me creating wordless comics starts as this direct and uniquely private creative experience, which then (hopefully) allows readers to project new interpretations and generate multiple meanings onto the imagery presented, discovering in that process the facets of the story which might hold personal significance for them.

What has also been interesting to me about making wordless comics to date

is that the less words there are in a story, the more weight they tend to have. We as readers are used to words. We look to them as signposts through a narrative, and when there are very few to go on we tend to pay particular attention to them. There are some (usually single) words in many of my comics, and 90 percent of the time they end up working as double entendres in the narrative, which pleases me immensely.

Last but not least, wordless comics break down the boundaries of language

in a multicultural sense, making them potentially accessible to a wider readership. While images are admittedly also guided by class and cultural privilege, the alphabet they comprise is not restricted to preconceived symbols, hence providing a richer catalyst for new stories about mental landscapes that might otherwise never reach the public realm.

I really treasure creators who are brave enough to invite me (as a reader)

in for a look at those landscapes. It’s this monumental act of trust on their part. Actually, if you really think about it, it’s this monumental act of trust on the part of both reader and author: after all, both creating and reading books involves a conscious decision on the part of two (potentially) complete strangers to dedicate a whole lot of time to each other’s inner worlds. And that gift is for me (as a reader) a real honor; it makes me want to take as much away from that book as humanly possible. Or to be taken away with it as much as humanly possible.

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Notes

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1. Andrew Simonet, Making Your Life as an Artist (Philadelphia: Artists U, 2014). 2. Scott McCloud, Understanding Comics (New York: Harper Perennial, 1994), 30. 3. Irmela Marei Krüger-Fürhoff, Uta Kornmeier, stef lenk, Nina Schmidt, and Susan Merrill Squier, Sick! Reclaiming Illness Through Comics / Kranksein im Comic. Exhibition

catalogue / Ausstellungskatalog (Berlin 2017), https://‌refubium‌.fu‌‑berlin‌.de‌/handle‌/fub188‌ /20216. 4. Jessica Abel and Matt Madden, Drawing Words and Writing Pictures (New York: First, Second, 2009), 46, and McCloud, Understanding Comics, 67.

References Abel, Jessica, and Matt Madden. Drawing Words and Writing Pictures. New York: First, Second, 2009. Krüger-Fürhoff, Irmela Marei, Uta Kornmeier, stef lenk, Nina Schmidt, and Susan Merrill Squier. Sick! Reclaiming Illness Through Comics / Kranksein im Comic.

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Exhibition catalogue / Ausstellungskat alog. Berlin 2017. https://‌refubium .fu‌‑berlin‌.de/handle‌/fub188‌/20216. McCloud, Scott. Understanding Comics. New York: Harper Perennial, 1994. Simonet, Andrew. Making Your Life as an Artist. Philadelphia: Artists U, 2014.

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Desire Paths PathoGraphics and Transgenerational Trauma Maureen Burdock

I think that she interpreted me fragmentarily, which is worse than not to interpret at all. —Leonora Carrington, Down Below, 1944

Graphic Narratives as Collaborative Identity Mapping You are here. The map at the trailhead has a helpful red dot that represents you, me, anyone standing in this place at this time. Driving down the highway, you and I are reduced to a blue arrow on the GPS-powered guidance device, moving smoothly along human-made arteries. Whether sterile and utilitarian, ornate and beautifully illustrated, or hand-sketched on a napkin by a friend, maps combine images and text; thus, they require a complex literacy. Like readers of comics, readers of maps must negotiate visual and written elements to produce meaning. Old maps are fascinating because they allow the reader to see herself in relation to the world as it was; maps from bygone eras, at a glance, fracture familiar assumptions tied to current cartographic, cultural, and political contexts. Charles F. Fuechsel, writing for Encyclopedia Britannica online, informs us that cartography is allied with geography in its concern with the broader aspects of the Earth and its life. In early times cartographic efforts were more artistic than scientific and factual. As man explored and recorded his environment, the quality of his maps and charts improved. These lines of Jonathan Swift were inspired by early maps:

So geographers, in Afric maps, With savage pictures fill their gaps, And o’er unhabitable downs Place elephants for want of towns.1

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This contemporary encyclopedic definition of cartography tellingly positions “artistic,” “savage pictures,” “Africa,” “uninhabitable,” and “elephants” as binary opposites of “scientific,” “factual,” and “towns.” The compiler of this entry makes known his values and prejudices within this textual assemblage: “As man explored and recorded his environment, the quality of his maps and charts improved.” Linking old and new colonialist narratives of linear progress, this passage insists on replacing artists and elephants (and Africa) with (implicitly Western) scientific exploration and urbanization. Why do artists and elephants have to be wiped off the map? Wouldn’t “concern with the broader aspects of the Earth and its life” also include these clumsy creatures? Why can’t artists and elephants live alongside explorers and urban dwellers and scientists? For whom have those erasures “improved the quality” of maps?

With the help of unorthodox maps that I have created in my current graphic

narrative project (in process), The Baroness of Have-Nothing, I explore here how I use the chimeric comics form to trace transgenerational trauma, and how graphic narratives in general allow proverbial artists, scientists, explorers, and elephants to contemporaneously coexist and to inform and enhance one another’s experiences. Comics or graphic narratives (I use the terms interchangeably) have the capacity to reveal affective and social dimensions of trauma that a psychiatric diagnosis maps and interprets only fragmentarily.

It wasn’t until I was in my early forties that I entered counseling and was diag-

nosed with post-traumatic stress disorder (PTSD). The first decades of my life were haunted by losses and longing. When I was seven, my mother fled across the Atlantic Ocean with me to escape domestic violence. Leaving Munich for Chicago without warning meant that I had to leave everything behind—father, family, friends, school, language, culture, toys, and pet—all of it. My story is that of an individual narrator dealing with PTSD resulting from that trauma of displacement and from childhood sexual abuse, but in The Baroness, I explore the possibility that PTSD is not just a mental illness affecting an individual during her or his lifetime but a transgenerational, culturally embedded, and materially embodied chronic condition. From an early age, I was aware that my experience of displacement was a faint echo of my mother’s and her family’s history of displacement from Silesia by the Russian army in 1946 (she was also seven at that time). Later, I recognized other familial imbrications—connections between my identity and the stories of my forebears, and with the culture and events that shaped them.

When I was very young, I began to “map” myself using art and writing. Even

before the sudden emigration from Germany, my home life was precarious, imperiled by my parents’ warring and frequent geographic relocations. “Mapping”

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myself was a method to prove that I and the people and things and places I loved existed; it anchored me to a world in which I had creative voice and vision. As I was growing up, I thus accumulated an archive of my own art and writing. In my teens, I began to consciously identify my visual journals, in particular, as “identity maps” that showed me where I had been and helped me to locate myself in motion and in relation. Around that time, I also began to sense that following the pathways that connect my own stories to my ancestors’ tales was key to healing personal wounds and, on a macrocosmic scale, to understanding how war and violence affect generations of people long after treaties are signed.

Psychogeographical mapping and path-making are useful metaphors to

describe how autographics have the capacity to reconnect the historically, culturally, and materially embedded, communal, and affective aspects of identity, memory, trauma, and healing. The word path has an interesting and disputed history. According to Chambers Dictionary of Etymology, one widely accepted theory is that its Proto-Germanic ancestor patha was borrowed from an Iranian language, cognate with Sanskrit pathás and with Greek pátos, with Latin pons (bridge), Greek póntos (sea—a way from one land to another), and Indo-European pent-/pont- (go; arrive at).2 I invoke path here as a track created by many travelers but also as an avenue for expressing thoughts and emotions, and as a sequence of steps or a course of action for medical or psychiatric treatment (pathies as in homeopathy, allopathy, etc.). Specifically, I want to focus here on the path one hears and sees in PathoGraphics, in order to emphasize the relational aspects of trauma and recovery that graphic narratives reveal, in place of the isolating interpretations conventional treatments favor.3 Paths are collaboratively created, and they are materially and geographically specific. As geographers who are interested in comics, Courtney Donovan and Ebru Ustundag point out that “graphic medicine literature shows how graphic narratives can communicate complex health experiences, thereby disrupting clinical and legal representations that tend to simplify experiences like trauma.”4 Their idea of disruption resonates with me, or of making and mapping intuitive pathways (or “desire paths,” which I describe in detail later) in order to move through trauma—to access alternate routes toward recovery.

Contemporary maps allow us to locate ourselves and show possibilities for

movement from me to you and from here to there; they allow us to estimate times of arrival. Digitized interactive maps like Google Maps even let us see, all on one virtual page, multiple ways to arrive at a destination. Similarly, comics invite the reader to locate herself on the surface of the page, with multiple possibilities for engaging with, moving through, and making connections between drawn and written elements. Reading comics and reading maps are nonlinear processes, where the eye scans the surface, the “landscape” of the page, for significant features before homing in on particular details. By significant I mean significant to the reader, inevitably affected by what is significant to the creator. The reader is drawn in by the creator’s emphasis on particular areas—a map insert, a particularly striking image, a bolded word, an area of high contrast, a Desire Paths

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bright color. The reader follows paths drawn by the cartographer or cartoonist; the creation of meaning is thus a collaborative effort between creator, reader, and materials. 190



Both comics and maps inform their viewer-readers with visible elements

but also with what is left out, leaving readers to fill in the gaps with their own experiential knowledge. In comics, the gaps between panels where some of this magic happens are commonly known as gutters. Scott McCloud has famously asserted that the gutters between panels are where readers must use their own knowledge and imagination to seam together tiled fragments to create closure.5 Rather than closure, a term that invokes completion, I prefer to describe this activity as pathfinding—a fluid, never really closed or closeable process of translation and negotiation between panels and margins, written and drawn page elements. Further, the concept of rectangular frames, simultaneously interrupted and connected by avenue-like gutters, rests on a foundational grid concept. As Hillary Chute observes, “The print medium of comics offers a unique spatial grammar of gutters, grids, and panels suggestive of architecture.”6 But not all creators of comics resonate with this aesthetic. While the urban grid model is practical, efficient, and built to move masses of traffic along swiftly, there are other, wilder and more fluid, less predictable ways of imagining and navigating through time-space. Trauma and illness narratives do not readily snap to an efficient grid. In fact, one of the realities such narratives reveal is the displacement their authors feel—the inability to align themselves to the linear predictability and efficient movement expected in ableist cultures.

Wilder and more bewildering landscapes necessitate a different kind of

mapping and pathfinding, more freedom of movement in creating and/or following pathways as part of a curatorial and curative practice.7 Creators and readers of comics travel along these paths in order to move through time-space, deepening existing neural pathways or forging new ones as they meander. Paths are the cumulative result of countless feet, hooves, paws, and machines that have collectively inscribed them with the friction and weight of their motion, guided by common goals or desires. Itinerant philosopher Robert Macfarlane calls paths “the habits of a landscape.”8 He points out that paths are consensually created and maintained. Paths need walking, or they begin to disappear. Paths evidence intention, action, and affect. They invite active participation and purposeful movement. They lead the reader from one moment and location to the next, just as highways, roads, and trails on maps do.

Urban planners call paths created by walkers who abandon pavements desire

lines or desire paths.9 Susan Squier, following a thought trail forged by W. J. T. Mitchell and Hillary Chute, reminds us that drawing, too, is the performance of desire.10 I want to include the readers of comics in this configuration, as they follow the desire paths that the artist has established. The map or graphic narrative reader’s eye moves from one feature or page element to another, creating paths determined by her curiosity (desire for the unseen, not yet experienced), motivated

Pathographics

by her nostalgic desire (longing to return to what has been seen, touched, felt in the past), or inspired by aversion, fascination, or any number of affective states. The reader locates herself, and the comics creator invites: “If you read me, if you follow my desire lines, then you are changed—our memories, experiences, and desires have become enmeshed.” In this way, creators and readers together are able to inscribe desire paths, to fill in the gaps left by exclusionary scientific practices with “savage pictures”—they put the elephants back on the map.

Desire paths deviate from paved thoroughfares and meander in unexpected

directions. In a similar vein, comics present opportunities for embodied and less linear, exclusively text-bound epistemological exploration. One of the things comics do so well, for example, is to break us of predictable, left-to-right, top-to-bottom habits of reading. They challenge hierarchies that privilege words over images and cause readers to give equal consideration to visual elements as valuable information. In service of reuniting words and worlds, as I have pointed out elsewhere, comics (as one of many pict-oral cultural practices) reunite bodies and gestures with vocality and orality.11 Comics show pauses in speech with elements such as blank speech bubbles or ellipses; they employ copious capitalization, bolded letters, or italics for emphasis and to reveal speech patterns; and, further, they show gestures, body language, and facial expressions in sync with speech. In these ways, comics have the capacity to undo the left-to-right, top-to-bottom mechanics that create generalized, disembodied word-worlds.

As a practicing comics creator who is interested, for personal and intellectual

reasons, in memory and trauma, this capacity of the form to reunite voice, vision, and embodied experience feels especially relevant. Additionally, the workings of individual memory, like comics, are nonlinear and untamable. Memories, like cats, come and go as they please. In sympathy with posthumanist feminist thinkers, I understand memory as a web of interwoven filaments that together form a living, never fixed, understanding of the self.12 Rather than drawing “things” that I remember, I re-member and re-present myself by following the strands that I, guided by desire, weave into a sense of being-belonging in the world. In this purview, the sudden and/or forcible severance from a house, forest, pet guinea pig, person, or even a scent or a sensation that held meaning disturbs or reconfigures the web that is the self-in-relation. The suturing of such severances can be as painful or more painful than the original separation. This is because memory and identity have changed, more or less radically depending on the severity and size of the cut, the amount of time that has passed, and the amount of selfreconfiguring that has happened since the cut was made, so that reattachment conjures the original separation.

Familial and Historical Entanglements In crafting the introduction for The Baroness, I drew a braided timeline that telegraphs the idea of radical interwovenness (see fig. 12.1). I explain how each Desire Paths

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12.1  From Maureen Burdock, The Baroness of Have-Nothing and Other Haunting Tales, draft in progress. © 2017 Maureen Burdock.

return trip “down memory lane,” as it were, equipped with more and different information received in a new context (from Latin contextus; con- “together” and texere “to weave”), creates a new texture and feeling around those memories. I ask, “Does memory begin with threads of longing? Those threads of thinking-feeling—motion and emotion—pull us back, they compel the return trips, the back-and-forth of the shuttle, that eventually create the woven texture that is memory. The thin line of text, the Aboriginal song line, the braided chord, the neural pathway, the lifeline, the crimson capillary, the trace, the trail, the ghost path, the shadow site. Where such lines can be found, there is the possibility of movement through time-space in multiple directions.”13

As I mentioned earlier, my interest in memory and recovery stems from

personal and familial experience. My mother, Ingrid, began to tell me the stories of her traumatic childhood when I was very young. The earliest recollection I have was when walking in Lahr, Germany, the city of my birth. We were visiting my father’s parents, who I loved very deeply, and on an afternoon stroll we passed the road to the local Kinderheim (orphanage). My mother told me how she had ended up in an orphanage for four years after World War II. She and her mother and siblings had already been violently displaced and brought, via train cars meant for cattle, to a refugee camp. From there, her mother had fled by night across the closing East-West border and had taken her other two children Pathographics

to West Germany. When she came back for Ingrid, she found that her estranged husband had absconded with their daughter. The details of why my mother was left in that orphanage for several years, despite having two living parents, are murky. In that moment of hearing my mother’s story—I couldn’t have been older than five or six—I memorized the exact texture and color, smell and temperature of the loamy soil by the side of the road. Perhaps I did not know where else to “put” my mother’s story and the feelings attached to it at that time; I gave it to the earth, and so the clay and my mother’s recollection of displacement and abandonment became enmeshed in my memory.

I have heard my mother’s story many times since then. Each time, I receive

and work through her stories in a different context and with a more nuanced, deeper understanding. Over the years, I have accumulated knowledge of the machinery of war, of Stalin and his partitioning of Germany. Due to that decision by the Allied powers, ten to fourteen million people were expelled from the eastern reaches of what was Germany at the end of World War II, a process during which roughly two million died.14 I learned of some of the forces motivating my mother’s divorcing parents to leave their child in an orphanage for four years. I learned that the political circumstances that contributed to her trauma were as relevant as her parents’ domestic battles. As I came of age, knowledge of Ingrid’s parents’ animosity toward each other became, for me, entwined with national divisions and international retaliations—brutality and silencing at home reflected and reinforced larger patterns of war and suppression, and vice versa.

Ingrid’s woundedness wove itself into the fabric of my own childhood. It

seemed that, once she had been flung from her place of birth, she just kept moving. Even before she took me, aged seven, and fled from my father’s brutishness and threats of violence, I had lived in four or five cities in Germany and Italy. By the time I was eighteen years old, I had moved roughly twenty times. This instability reflected and reinforced my mother’s and eventually my own insecure attachments, to each other and to a larger community. A mother is only as good as the web of relationships—material, domestic, and cultural—that holds and sustains her. We unfairly blame mothers for the failures of an entire culture, as though they, like the earth I projected my feelings onto in Lahr those many years ago, were capable of holding and processing all of our collective sadness. How can we forgive ourselves if we cannot forgive our mothers?

In order to better understand who I am (and, by implication, how war and

trauma affect women and families over time), chorded together with this multigenerational, culturally and historically situated “braid,” I center each chapter of The Baroness of Have-Nothing on my relationship with a different female relative. Embedded in the title of this work is the dubious, ironic title my paternal grandmother irreverently gave to my maternal grandmother, “Die Baronin von Habenichts.” “The Baroness” was proud of the title she received when she married a Silesian baron in 1937 (this was her second marriage). Despite the brevity and overall unhappiness of this marriage, my grandmother would proudly use this Desire Paths

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title for the rest of her life, never dropping the von, which indicates nobility, from her last name. My feminist retracing of ancestral stories considers the nuanced nature of women’s adaptations to—as well as acts of resistance against—racist, 194

classist, and patriarchal demands. These women haunt me. In crafting The Baroness, I draw and I am drawn by invisible threads of longing, by paths of desire, and by traces my ancestors left—by ghosts. Perhaps I am especially compelled to understand how my life is braided together with theirs because of the sudden severance from everything familiar that I experienced as a child. Over the decades, I have been able to weave new connections into and from those familial strands— to grow a chosen, transnational family based on mutual desires.

As a young immigrant in the midwestern United States, I discovered that

reading, writing, and drawing could make me feel less lonely, and that these activities could help me to re-member the parts of myself—objects, places, and people—from which I had been suddenly severed. Drawing these aspects was a form of curation (materializing, examining, and ordering lost and longed-for elements) and as close to curative as was possible under the circumstances. Sometimes, though, drawing and writing just intensified my loneliness as I searched for words and images that could never really quite bridge the gaps—the chasm between what I felt and how I was received. I could no longer communicate in my mother tongue, and in rural Wisconsin, I was constantly teased and bullied for being different. My peers in the second grade called me a Nazi and formed an “army” to attack me at recess, certain of the justice of their actions, since film and television in the 1970s presented a very black-and-white image of Germans and Americans. I felt endangered and misinterpreted by them—invisible, illegible, inaudible.

Adding insult to injury, my new second-grade teacher insisted that I stop writ-

ing in cursive in favor of printing, a clumsy endeavor in which even my letters became alienated from one another. My first-grade teacher in Munich had taught us cursive by handing out large sheets of paper and having us write and retrace (over and over, entrancingly) each letter with colorful crayons. Each letter, in this way, was a drawing, formed with the whole hand, arm, and kinetic chain, linkages that allowed me to “feel” each cipher in and from my core. The way that I had learned to write and speak, path-making methods intrinsically connected to my memory and early identity, were now suddenly obsolete. Drawing remained as a means for mapping myself that I did not have to abandon. Peers and teachers in school frequently expressed admiration for my drawing skills, and then I felt less alone, less invisible.

For many years, drawing and writing were the only “therapy” or “medicine”

to which I had access. When I was nine, after being left alone for a summer with a pedophile uncle in California who used pornography as inspiration for his sexual games with me, I began to draw self-portraits. Through this practice, I was able to re-present myself as a human being, not as the sexualized object I had been made into. This practice has continued over the decades, as evidence of

Pathographics

my ever-changing embodiment. Sometimes palliative, sometimes painful, drawing might be recognized as a kind of conjuring or necromancy—rematerializing an imperiled self and the people, places, and things enmeshed with one’s identity. Just as maps allow the traveler to locate and to metamorphose herself in time-space, drawing allows the drawer to re-member and re-present who she is, always in connection.

Fractured and Mended Maps I have referred earlier to drawing as affective path-making and performance of desire. Following the logics of Squier, Mitchell, and Chute, I maintain that pulling and pushing of the pen and brush is following desire paths traveled by those who were here before us and maintained in collaboration with contemporaries. As I mentioned earlier, the word path connotes a course of action, movement toward someone or ones, some thing or concept. Path-making is a practice that suggests relationality and connection; simultaneously, pathfinding is a curatorial practice and therefore necessarily also selective and exclusionary. With every step taken, every word uttered or written, every glyph drawn, there is a curatorial decision to omit a thousand others that would have generated different worlds.

Physicist and philosopher Karen Barad refers to this process of selective cura-

tion as making “agential cuts” in order to fleetingly examine a thing: “That is, the agential cut enacts a local resolution within the phenomenon of the inherent ontological indeterminacy.”15 The intricate interweaving of personal, familial, and cultural stories that I analyzed earlier telegraphs the inherent malleability and subjectivity in curating one’s identity and in mapping memory paths. Returning briefly to the Encyclopedia Britannica entry on cartography, elephants may be on the map because the cartographer remembered seeing them there, knew that elephants lived in Africa, or simply because he wished them to be there. In this sense, early maps included elements of fantasy. I posit that such fantastical elements and factual attributes enhance and amplify one another.

Elephants don’t exist on contemporary maps of Africa. These entities have

been erased in the name of scientific accuracy. But this erasure, I argue, makes them less “fantastically accurate,” to employ German writer Christa Wolf’s phrase.16 The idea that the imposition of discursive order is a form of falsification, and that this order actually impedes the formation and recollection of memories, runs throughout Wolf’s work. For this reason, she opts not to chart her thoughts in a grid-like manner. Instead, though she does so not with drawings but with particularly evocative language, she frequently employs nonsequitous techniques—hence invoking a fantastical interplay between seemingly random elements. The writer forges thought paths that meander and lead the reader into places that are not easily navigable.

Wolf’s sense of temporality is also markedly nonlinear. In Kindheitsmus-

ter (Patterns of Childhood), a work that has widely been acknowledged as Desire Paths

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autobiographical, the author returns to the town where she grew up. She, like my own mother and like millions of Germans who were displaced from their homes due to the partitioning of Germany at the end of World War II, grapples with loss 196

and alienation. The author expresses her sense of dislocation and unease, caused largely by her recognition of her own complicity, as a child, with National Socialist ideology. Wolf’s narrative is marked by triangulation. She cannot bring herself to write in the first person, “Because it is unbearable to think the tiny word ‘I’ in connection with the word ‘Auschwitz.’”17 The child-self, Nelly, is referred to in the third person, “she”; the adult narrator who is visiting her hometown, now Polish, is referred to in the second person, “you.” These two-people-in-one are continually in dialogue with each other, so that any chronological narrative is constantly interrupted. A third point of view is introduced only at the very end of the book: “The child who was hidden in me—has she come forth? Or has she been scared into looking for a deeper, more inaccessible hiding place? . . . And the past, which can still split the first person into the second and the third—has its hegemony been broken? Will the voices be still? I don’t know.”18 As the author reveals her knowing adult self—the “I” in the present moment, she is only able to express doubt.

Having been born two and a half decades after the end of World War II, unlike

Christa Wolf, I do not suffer from the heavy burden of complicity in Nazism, but I look to writers of her generation in order to help me understand the complex entanglements of displacement and rape, victimhood, silence, and complicity that shape the memories and identities of my foremothers. I hope that engaging with their stories while speaking from my own subject position will contribute to a deeper understanding of contemporary European and Euro-American women’s suffering under and complicity in systemic racism and misogyny, still very much rampant in our present day. President Trump’s rallying cry, “Make America great again,” spoke to many because it evoked a mythic time in which America was “great.” Clearly, this evocation relies on the nostalgia of those who are not and were not victims of racism and gender-based oppression, but it also speaks to those who long to imagine (and to prolong indefinitely) a time of innocent childhood, or of childlike innocence, when they were not yet conscious of institutionalized violence.

When feeling nostalgic, one may wish to step into a landscape and find things

unaltered, to rediscover memories there that one can dip into, like stepping into a still pool. Instead of the still pool, however, one is more likely to encounter rushing rivers, roads that have been widened or washed out, paths that have been overgrown. One finds, instead of one’s individual memories, preserved like ladybugs in amber, a community of stories, chaotically enmeshed. What is a place or a person but a collection of memories, of lives and deaths? History, geography, biology, “nature”—what are these really but innumerable and interwoven entities and their stories, sights, sounds, scents?

Pathographics



In describing my reunion with my family, which only happened after my

father’s untimely death, eleven years after my mother ran away with me, I conjure a map of the divided Germany as metaphor for reunification (fig. 12.2). Before the appearance of this map in The Baroness, I describe the conditions of this familial reunion: “My reunification with Oma, Opa, and the rest of my father’s family happened in 1989, just months after my father’s untimely demise on November 17, 1988, his 48th birthday. I was 18 when it happened. Though there is no direct correlation, it is symbolic for me that the year of that personal, familial reunification coincided with the fall of the Berlin Wall, the symbol of the Cold War Era that had kept families apart for 30 years.” My map of the divided Germany shows the partitioning that happened at the end of World War II. More specifically, it reveals the painful suturing that had to happen in order to reunify the two sides, like stitches after surgery. I had just had a miscarriage and had learned of my father’s untimely death before I was able to reconnect with my grandparents. The suture line thus also reveals the painful conditions of this reunification. I looked at images of C-section scars in order to get a better sense of what a fresh suture line really looks like. A purposeful choice, as C-sections are one of few surgeries that, unlike my miscarriage, hopefully yield happy results—a vital infant—and is in a sense a process of separating mother and baby and then reuniting them.

Borders and walls are prime examples of “cuts,” imposed by humans and on

humans and other beings, forcing reorganization and repair years later (these cuts are never permanent fixtures, though their enactment causes definitive change). Borders embody traumas, result from them, and perpetuate them. The map of Germany as a freshly sutured wound foreshadows a topic I explore later in The Baroness and that I mentioned previously—my mother’s and her family’s violent displacement from Silesia in 1946. So often, military language and medical language are intertwined. We hear about surgical strikes, Operation fill-in-the-blank (Desert Storm, Iraqi Freedom, etc.), isolation, side effects, or collateral damage. This medicalization of military language is meant to perpetuate the sedating illusion that war is sterile, concise, has a clear purpose, and is even somehow curative. The realities of bleeding, shell-shocked children, severed limbs, and millions of traumatized refugees, of decimated homes and poisoned environments, remain safely hidden behind the surgeon’s white drapes. This sanitization happens purposefully, cultural theorist Marita Sturken points out, as the realities of chaos and suffering caused by war clash with clean and tidy national narratives about freedom and progress.19 As a result, images of grave war injuries have become increasingly rare in U.S. mainstream media.

After World War I, Dadaist artists such as Hannah Höch reacted to the horrific

mutilations suffered by soldiers during that conflict. Her techniques of cutting or tearing apart images from magazines and newspapers directly and indirectly allude to the fragmentation and trauma so palpable and visible in Germany during the Weimar era. For some, this sense of splintering and loss contributed to a tidal wave of nostalgia for less complicated times that helped contribute to Desire Paths

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12.2  From Maureen Burdock, The Baroness of Have-Nothing and Other Haunting Tales, draft in progress. © 2018 Maureen Burdock.

the rise of fascism. It seems perhaps paradoxical that this worldview, emerging from wartime dismemberment practiced by men fighting for nationalist myths of unity and might, opened a space for women to assert their own viewpoints alongside male narratives. These artistic revelations show the disidentification that women often feel in relation to patriarchal structures, needing to participate as we are social creatures but always having to compromise important aspects of the self in order to be legible to and effective in a male-defined world.20 Höch’s photomontages mark a shift away from comprehensive, holistic realities in competition with one another, to one of paratactic, prismatic perspectives, sometimes in collaboration with one another but more often uneasily, grotesquely, Pathographics

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12.3  From Maureen Burdock, The Baroness of Have-Nothing and Other Haunting Tales, draft in progress. © 2018 Maureen Burdock.

coexisting. The artist persisted in making her photomontages throughout World War II (and until the 1970s), despite spending much of her time in hiding from the Nazis and seeing many of her friends imperiled by that regime. I find her work relevant to the study and practice of comics, as Höch’s integration of disparate images and words, torn from print media of her time and rearranged in a freeform, ungridlike manner, prompt the viewer-reader to forge her own thought paths in order to create meaning.

The montage opposite the sutured map of Germany (fig. 12.3) configures my

personal experience with fragmentation and reconnection. Next to this image, I describe how I had recently found this assemblage in an album my grandparents Desire Paths

had put together. In one fragment, my baby self sits on a now-anonymous lap. The fragment is positioned so that the toddler appears to be gazing at an image of a young woman in a traditional Black Forest costume. Next to this montage, I 200

phrase my curiosity about what this baby self is looking at: “The cut edge of the photograph she inhabits is a cliff edge. The vulnerable toddler gazes towards an unknown future; her grandparents fill in that future with their hopes for a happy, traditionally fulfilling life, embodied by the young woman in the pompon hat. The rift between their hopes and the little girl’s actual experiences could hardly be more distinct.” In the text above this montage, I describe my unease as I finally reunite with my beloved grandparents after eleven years, more than half of my childhood, spent alienated from them: While I had made it my task, with help and encouragement from my mother, not to forget my mother tongue, I was anything but the “Schwarzwald Maedl” [traditional Black Forest maiden] Oma had once supposed (hoped?) I would embody. The values of a somewhat quaint traditional lifestyle, of finding fulfillment in family and career, had been complicated and subverted in my years growing up in the United States. I was returning with a cracked shell. I had sustained a number of serious psychic injuries to the softest, most vulnerable parts of my being. Seeing what had once been my home garden only made me more aware of my brokenness, my disconnectedness. My grandparents perhaps had expected to welcome their long-lost first grandchild home; instead, they found themselves receiving a wounded foreigner.

I could no longer effectively “translate” myself to my relatives, as we now had different reference points. I was lost. When lost in the wilderness without a GPS device, triangulation is an effective method to locate the self. Using a compass and straightedge, the lost hiker pinpoints three recognizable features on the topographic map. Next, the navigator draws straight lines between these features. The spot where the lines intersect show the hiker’s approximate location. As Eva Hoffman describes in her biography, Lost in Translation, she uses her native Polish and the English she learned as a young immigrant in Canada as a triangulation technique to locate herself. She even goes so far as to suggest that a multivalent perspective borne of biculturalism, of bivalence, is a useful position to have in today’s world. Hoffman writes, “The gap [between cultures and languages] has also become a chink, a window through which I can observe the diversity of the world.”21 Similar to how bilingualism might foster a multivalent perspective, so drawing and writing as different literacies offer multiple reference points that allow the wanderer to map her location. As optimistic as all this sounds, dislocation hurts. I express this painful experience as a cultural chasm—a deep rift in the earth’s surface (see fig. 12.4). As a child, my understanding of earthquakes was that a chasm would open up in the earth’s surface, into which everything would fall. The idea terrified me. This image telegraphs the concept that cultural

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12.4  From Maureen Burdock, The Baroness of Have-Nothing and Other Haunting Tales, draft in progress. © 2018 Maureen Burdock.

Desire Paths

and linguistic dislocation can be experienced as an unbridgeable gap, and that everything that one holds dear, the very ground beneath one’s feet, has suddenly given way, and that everything that remains standing (on either side of the gaping 202

fault line) is also always still in danger of collapsing into a bottomless crevasse.

Desire Paths and Savage Pictures: The Way Home? As a young adult, I recognized that my visual journals were, in a way, my mapping of places I had known and missed (that mattered to me), and a searching or yearning for meaningful connection in place of the pieces of myself that I had lost. I was not able to grieve the loss of home; adults in the rural Midwest where I arrived as a child immigrant felt I should be grateful to be in the United States (and I was decidedly ungrateful at that time); children taunted me because of my weird accent; I was misunderstood. My visual journals were the one place where I could safely express myself. Early on, I defined these journals as “maps,” not just of places and people but of my own being-becoming. I now also recognize that these journals are graphic narratives, where images and text coincide to create and record meaning. One of the reasons I didn’t recognize these as comics was that I combined images and text in decidedly ungridlike ways.22 By keeping these journals, and by continuing to cross boundaries between handwriting, drawing, painting, printing, making, thinking communally and academically, and following personal strands of desire, I form and constantly re-form a pliable mesh of resilient tensile strength that is the self-in-relation.

Where is the line that divides one’s feelings and longings and memories of

places from the “self”? All of the places that one inhabits are so intrinsically interwoven with the self that to make such a distinction is really a form of violence. Perhaps it would be useful to acknowledge that Cartesian logic is a cultural and chronic pathology that pleads for constant vigilance and tonic, radical (as in root level, not necessarily aggressive) treatment.

As I have shown, comics are a method for identity mapping, for manifest-

ing “fantastic accuracy,”23 and for forging new thought trails—desire paths—that invite compassionate collaboration as curatorial and curative methods. Following the desire paths between written and drawn elements that comics offer is one method for triangulation—for finding a way home (and by home, I mean an expanded posthumanist feminist understanding of that term). Colonialist cartographies imagine home as a fortress, isolated from savage nature, where elephants and artists, cities and scientists cannot coexist. Savage stems from the Latin silvaticus or salvaticus, as in sylvan, meaning “of the woods.” The primal fear of becoming lost in the woods—of becoming bewildered—may be behind so much clear-cutting. But the desire to lose oneself, to recognize radical connectedness with humans and beasts who share one’s habitat—that is a more primal, elemental, and multivalent home-seeking.

Pathographics



Trauma is bewildering. Medical and psychiatric diagnoses tend to come up

with “clear-cut” solutions for this bewilderment. Often using military terms, treatments focus on bodies and on isolating a single traumatic event or pathogen in order to find its antidote. Instead of this, I join others who forge desire paths borne of common (as in communally shared) sense: the footpath that cuts across the vacant lot, the trail that leads down the embankment and resists the arduous switchbacks, the track that leads us through a hole in the rusted fencing. With each new situation, there are multiple opportunities to learn ways out or through the difficulties. As Robert Macfarlane points out, the word learn stems from the Proto-Germanic liznojan, to follow or to find a track.24 Graphic narration is learning, seeking knowledge by inscribing connections with others and with more-than-human objects or elements.

Notes 1. Charles F. Fuechsel, “Map: Cartography,” https://‌www‌.britannica‌.com‌/science‌/map. 2. Robert Barnhart, ed. Chambers Dictionary of Etymology (London: Chambers, 2002). 3. PathoGraphics is a neologism coined by Irmela Marei Krüger-Fürhoff and her colleagues interested in forging critical connections between modalities of care, comics, and literature. 4. Courtney Donovan and Ebru Ustundag, “Graphic Narratives, Trauma and Social Justice,” Studies in Social Justice 11, no. 2 (2017), https://‌doi‌.org‌/10‌.26522‌/ssj‌.v11i2‌.1598. 5. Scott McCloud, Understanding Comics: The Invisible Art (New York: HarperCollins, 1993). 6. Hillary Chute, Disaster Drawn: Visual Witness, Comics, and Documentary Form (Cambridge: Cambridge University Press, 2016). 7. According to Barnhart, Chambers Dictionary of Etymology, the word curator came into use around 1375, from the Latin curature, a person charged with the cure of, or caring for, souls. Cure and curation in the sense of medical care or treatment came into usage around the same time in English (243). The use of the words curate and curator/curation in relation to specialists caring for library or museum exhibitions was first recorded in 1632. As a creator of comics, I see curation as the careful decision-making in arranging images and text. I suggest that the ways in which we construct our identities is a curation of memories and imaginings. Daily, we curate how we tell our stories, to whom, and in which sequence or temporospatial configuration. Simple decisions about how to transmit stories have profound effects—distancing, denying, suppressing, uplifting, connecting, reimagining, transcending, and so on. 8. Robert Macfarlane, The Wild Places (London: Granta, 2017), 17.

9. Ibid. 10. Susan Merrill Squier, Epigenetic Landscapes: Drawings as Metaphor (Durham: Duke University Press, 2017). 11. Maureen Burdock, “Labradoodle or LionSnake? Comics as Folkloric Tradition,” in Sightlines (San Francisco: California College of the Arts, Visual and Critical Studies Department, 2014), 75–96. I coined the neologism pict-oral to describe transnational traditions that combine images and words in various ways. 12. I am following thought-paths created by posthumanist material feminists such as Karen Barad, Stacy Alaimo, and Donna Haraway et al., who envision radical interconnectivity (or intraconnectivity) between human and more-than-human entities. The chimeric (or cyborgian, if you will) graphic narrative form, I posit, is especially well suited for movement beyond the Western myth of the individual, so often assumed in Western life writing, into posthuman, or more-thanhuman, territory. 13. From my graphic memoir in process, The Baroness of Have-Nothing (in process). 14. Maja Zehfuss, Wounds of Memory (Cambridge: Cambridge University Press, 2007). 15. Karen Barad, “Posthumanist Performativity: Toward an Understanding of How Matter Comes to Matter,” in Material Feminisms, ed. Stacy Alaimo and Susan Hekman (Bloomington, Ind.: Combined Academic, 2008), 120–54. 16. Christa Wolf, Patterns of Childhood (New York: Noonday Press, 1999), 272. 17. Ibid., 230. 18. Ibid., 406. 19. Marita Sturken, Tangled Memories: The Vietnam War, the AIDS Epidemic, and the Politics of

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204

Remembering (Berkeley: University of California Press, 2009). 20. Jose Esteban Muñoz coined the term disidentification to describe the creative ways in which people outside of mainstream culture negotiate its norms and expectations, neither fully embracing nor rejecting that culture, in Disidentifications: Queers of Color and the Performance of Politics (Minneapolis: University of Minnesota Press, 1999).

21. Eva Hoffman, Lost in Translation: A Life in a New Language (New York: E. P. Dutton, 1989), 274. 22. An increasing number of comics creators are arriving on the comics scene. We cannot map ourselves in ways that fit tidily into white, ableist, heteronormative, urban, Western, for example, conceptions of being-becoming. We bring with us our culturally specific artistic influences and life experiences. 23. Wolf, Patterns of Childhood. 24. Macfarlane, Wild Places, 31.

References Barad, Karen. “Posthumanist Performativity: Toward an Understanding of How Matter Comes to Matter.” In Material Feminisms, edited by Stacy Alaimo and Susan Hekman, 120–54. Bloomington, Ind.: Combined Academic, 2008. Barnhart, Robert, ed. Chambers Dictionary of Etymology. London: Chambers, 2002. Burdock, Maureen. “Labradoodle or LionSnake? Comics as Folkloric Tradition.” In Sightlines, 75–96. San Francisco: California College of the Arts, Visual and Critical Studies Department, 2014. Carrington, Leonora, and Jeanne Megnen. Down Below. Chicago: Black Swan, 1983. Chute, Hillary. Disaster Drawn: Visual Witness, Comics, and Documentary Form. Cambridge: Cambridge University Press, 2016. Donovan, Courtney, and Ebru Ustundag. “Graphic Narratives, Trauma and Social Justice.” Studies in Social Justice 11, no. 2 (2017): https://‌doi.org‌/10‌.26522‌/ssj‌. v11i2‌.1598.

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Fuechsel, Charles F. “Map: Cartography.” https://‌www.britannica‌.com‌/science‌ /map. Hoffman, Eva. Lost in Translation: A Life in a New Language. New York: E. P. Dutton, 1989. Macfarlane, Robert. The Wild Places. London: Granta, 2017. McCloud, Scott. Understanding Comics: The Invisible Art. New York: HarperCollins, 1993. Muñoz, Jose Esteban. Disidentifications: Queers of Color and the Performance of Politics. Minneapolis: University of Minnesota Press, 1999. Squier, Susan Merrill. Epigenetic Landscapes: Drawings as Metaphor. Durham: Duke University Press, 2017. Sturken, Marita. Tangled Memories: The Vietnam War, the AIDS Epidemic, and the Politics of Remembering. Berkeley: University of California Press, 2009. Wolf, Christa. Patterns of Childhood. New York: Noonday Press, 1999. Zehfuss, Maja. Wounds of Memory. Cambridge: Cambridge University Press, 2007.

13

Scaling Graphic Medicine The Porous Pathography, a New Kind of Illness Narrative Susan Merrill Squier

In ever greater numbers, people are writing autobiographical accounts of their experience of illness and treatment, narratives that are often called pathographies or autopathographies. Increasingly patients are turning to these narratives for anecdotal information about particular illnesses and their treatments, conventional and alternative. —Anne Hunsaker Hawkins, 1999

A constitutive, unavoidable element of any representation, evaluation or literary reading is to presuppose or project a certain scale in space and time for its issues. —Timothy Clark, 2015

In the PathoGraphics project, we examine the relations between illness narratives and works of graphic medicine, a comics genre whose popularity has been fueled by the autobiographical immediacy of texts that tell the stories of patients, caregivers, or health care workers confronting illness, disability, and medical treatment.1 Both PathoGraphics and graphic medicine originate in the medical humanities with its central concept: the pathography, the autobiographical account of an experience of illness and treatment.2 As Anne Hunsaker Hawkins points out in a landmark essay, although pathographies can be traced back to

John Donne’s seventeenth-century devotional poems, the stand-alone pathography (as distinct from the diary or the journal in which illness figures as a passing theme) really comes into its own in the second half of the twentieth 206

century. She groups pathographies according to authorial intention into four types: didactic pathographies, which are focused on helping readers navigate medical issues; angry pathographies, which are concerned with laying bare the abuses of the medical system; the “alternatives pathography,” dedicated to finding options other than standard medical treatment; and the new type she labels “ecopathography,” which “links a personal experience of illness with larger environmental, political, or cultural problems.” Hawkins argues that “the motive of the authors of ecopathographies is prophetic: they are warning the rest of us that their illnesses are the signs and symptoms of much larger problems confronting our culture as a whole.”3

Flash forward almost thirty years from Hawkins’s groundbreaking contribution

to the medical humanities, and we find a new addition to the graphic pathography, one that broadens the focus of the ecopathography, situating the individual illness story visually and thus enabling us to understand its ramifications at multiple scales simultaneously. Both “permeable to outside influences” and “capable of being penetrated,” this new, porous pathography is open to the other illness stories that are also co-occurring within and around the human story. Decentering the human, it offers a scaled-up version of the illness narrative.4

The comics in which we are now finding these new, porous pathographies

move graphic medicine beyond its author-focused, autobiographical origin. They are the product of multidisciplinary collaborations, exemplify a variety of novel work practices, and address issues that extend beyond individual medical concerns to feature multiple subjects and complex and multiscale contexts. Because they are scaled up, made larger in extent or reach, they bring to the pathography genre a new set of practices, aesthetic techniques, and thematic concerns. Thus these new graphic pathographies not only encourage those of us in the PathoGraphics project to think differently about the illness narrative (whether text or comic), but they challenge those of us who study graphic medicine to revise our critical methods.5

The PathoGraphics perspective includes study of the cultural and national

inflections that shape graphic pathographies differently; therefore, this essay examines three collaborative groups in far-flung locations who carry out this new mode of comics work. Working both over email and, when possible, in person, I interviewed a Scotland-based group of collaborators;6 members of a Melbourne, Australia, collaborative group known as Scale Free Network;7 and a Berlin-based collaborative group centered at the Freie Universität Berlin.8 In all of the interviews, I asked about the roles played by the different comics workers, their collaborative methods, their formal and aesthetic decisions, the contexts in which their work took place, their ways of incorporating different voices and perspectives, and their framing of health and illness.

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One particular point stood out in the interviews: each group relied on the

visual and conceptual technique of scaling. Scaling has been important to comics as a medium from the era of Little Nemo in Slumberland to superhero comics, whose worlds are structured according to “vast speeds and scales, fundaments of the sublime.”9 Scale enables one to order or arrange something according to “the spatial, temporal, quantitative, or analytical dimensions used to measure and study any phenomenon.”10 From comparative charts of the relative sizes of living beings to the familiar pain scale, both biology and medicine arrange things in order to understand them and to express that understanding. Conceptual scaling also figures in the health humanities, since the focus of the field extends beyond “the individual’s experience of disease, illness and health” to include also “the community perspective of these issues including equity, funding, policy, [and] resources allocation.”11 Because the health humanities addresses not only Western medicine but global health, the scaled and entangled issues of gender, race, ethnicity, and class magnify the complexity of any autonomous Western individual narrative of health and illness. Indeed, health humanities scholar and physician Sayantani Dasgupta urges us to scale up our analysis as well, by bringing “a critical, self-reflective eye to our scholarship, teaching practice and organizing.” We must ask: “How are the stories we tell, and the stories we are told, manifestations of social injustice? How can we transform such stories into narratives of justice, health, and change?”12

Dasgupta’s question was central as I interviewed these groups, asking them

whether they built into their comics the opportunity to hear and see from the point of view of their subjects. I paid attention to the ways gender and race played out both in their collaborations and in the comics they created together. Finally, I considered the structural context in which their comics were created, asking how it helped or hindered the creation of transformative narratives attentive to the issues Dasgupta described.

The comics created by these three collaborative groups address health and

illness at three disparate scales: the scale of the molecule and cell, the scale of the organism, and the scale of the planet. And therein lies the challenge for the creators of these comics and their readers. While scaling “unites the biological and the cultural across a range of ascending scales from the microscopic to the macrosocial,” when we move from one scale level to the next, we necessarily engage over and over again in “scale framing,” the “discursive practices that construct the scale at which a problem is experienced as a mode of predetermining the way in which it is conceived.”13 The vicious cycle here lies in the fact that the practices constructing the scale at which we experience a problem also construct (and limit) the ways we can think of the problem. As we move from scale to scale, trying to make the individual human story correspond with the stories told at another scale, we navigate a paradox: what seems centrally important at one scale may seem insignificant at the next. How do we make the scales relevant to one another? Yet in the case of comics, this challenge is also an opportunity. Poised Scaling Graphic Medicine

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to exploit the tensions between words and images, comics offer new affordances for addressing the paradoxes caused by the process of rescaling. Let us navigate the different scales, and explore how scale framing reveals their relations, to see 208

how they play a role in the creation of these new porous pathographies.

The Scale of the Molecule and Cell Parasites! is a short comic created by the collaborative group at the Wellcome Centre for Molecular Parasitology [WCMP] in Glasgow, Scotland. The comic is focused on three microscopic organisms—plasmodium, trypanosoma brucei, and leishmania—and the mechanisms by which they cause malaria, sleeping sickness, and kala-azar.14 In 2010, microbiology Ph.D. student Jamie Hall noticed that the Wellcome Trust had set aside some funds to celebrate its seventy-fifth anniversary, and he suggested to cartoonist Edward Ross that they apply for funds to create a comic about parasitic disease. Given its origins and funding, Parasites! began as part of an outreach project, to introduce its readers to the kind of research on molecular parasitology taking place at the WCMP. However, the cartoonists expanded that focus on parasites to reveal the intimate entanglements that constitute life at all scales. As they traced the subjects of the research, they followed their molecular parasitic protagonists into new spaces, incorporating other protagonists and taking on new identity positions.

Their cartooning practice was equally adventuresome, mingling the resources

of science and art. For example, to choose the color scheme for the comic they drew on the conventions both of electron microscopy—which uses high-contrast artificial colors to differentiate microscopic structures—and of classic sixtyfour-color sci-fi comics.15 And while anthropomorphism is a familiar cartooning strategy to appeal to reader interest, in this comic the artists shunned that technique, instead representing the parasites as aliens or machines, a view much closer to that held by the scientists with whom they were working. “Single-celled organisms are chemical machines in a lot of ways,” Ross explained to interviewer Alex Fitch, “so we drew that instead.”16 As he elaborated later to me: “We obviously play with a difference between the internal and external world in these comics, blowing up the microscopic world to an accessible size. I think from the start we’ve been quite playful with scale too—presenting giant parasites, floating parasites, clockwork parasites, etc.” The goal is not entertainment alone, however. “The hope is to illuminate and excite, but not to mislead.”17

While the focus of Parasites! was on the researchers and their study of

disease-bearing parasites, I wondered why the cartoonists hadn’t also incorporated the voices of the potential patients suffering from those tropical diseases. Edward Ross, one of the collaborators on Parasites!, explained: My co-writer Jamie and I have repeatedly discussed the politics of representation in these comics, and we certainly wouldn’t have felt confident speaking on

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behalf of someone from sub-Saharan Africa about their experiences. At the same time we’ve tried hard to represent any patients/potential patients visualized in the comic as being real people with diverse experiences, rather than faceless/personality free “victims” of disease. I think it would be great to hear from the experiences of people living with diseases like Malaria or Sleeping Sickness in their lives, but I feel that it wouldn’t be our place to tell that story. A local writer and artist would far and away do much better justice.18

Rather, the comic relies on techniques of perspective and scaling to encourage the reader to connect the scales at which this parasitic illness manifests itself. So, in a four-panel page from Parasites!, two small panels in the important top left position establish our empathy with a young African boy, first seen from above as if by an adult parent or friend and then seen up close as the tsetse fly lands on the vulnerable side of his neck (see fig. 13.1). The suspense of the second panel gives way to horror in the multiscaled, double-tier third panel that sweeps from a close-up at the upper right down to a dizzying double perspective (microscopic and also telescopic) filling the entire bottom of the page. We watch as the tsetse fly (now scaled to gigantic proportion) injects the trypanosome parasites into the bloodstream beneath the boy’s skin. Microscopic at first, as they move into the bloodstream they become huge, spreading out into the blood-red air above a nighttime view of Glasgow, the city in which the researchers are studying the deadly disease of sleeping sickness. From the individual at risk to the group working to mitigate that risk, and from the microscopic parasite to the sleeping city, these four introductory panels ask the reader to grapple with the problem of making these disparate (and at times impossibly clashing) scales harmonize with each other.

Not only are the “parasites’ lives . . . completely intertwined with ours,” a

researcher explains in a later panel, but “domestic animals can also be vulnerable, and for people living hand to mouth, their loss can be catastrophic.”19 The comic emphasizes the parasites as agential beings, as researchers describe them “subverting and evading the immune responses mobilized against them,” “hiding inside our cells where antibodies can’t find them,” and evading “the immune system by constantly changing their surface coats.” The reallocation of agential power from the human to the microbial is seen most clearly in a later panel, in which an African woman at risk for sleeping sickness is shown at the same visual scale as both the purple and pink trypanosome who threatens her health and the bottle of the lethal arsenic-based drug that was once the only treatment for sleeping sickness. As the caption explains, the hope is that the melarsoprol will kill the parasite before the parasite kills the patient. This paradoxical scalar distortion, like the attribution of more agency to the parasite than to the woman endangered by it, challenges the implicit equivalence between people, parasites, and pills, and asks us to put patient health before profit as the dominant principle guiding the development of drugs for tropical diseases (see fig. 13.2).20

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13.1  Spatial scales of sleeping sickness. From Jamie Hall, Rachel Morris, and Edward Ross, Parasites! (Glasgow: University of Glasgow Wellcome Trust Centre for Molecular Parasitology, 2010), 2.

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13.2  Scalar equivalence as rhetorical device. From Jamie Hall, Rachel Morris, and Edward Ross, Parasites! (Glasgow: University of Glasgow Wellcome Trust Centre for Molecular Parasitology, 2010), 6.

The Scale of the Organism (but Which Organism?) Is illness a war? Can a war illuminate the way we think about illness? The Invisible War, created by the Melbourne, Australia, collaborative group Scale Free Network, tells two stories simultaneously (see fig. 13.3).21 Although they take place on very different scales, these stories echo, subvert, and intensify each other, creating what I call a reverberative narrative.22 At the macroscopic scale, this is the fictional pathography of Nursing Sister Annie, who while serving at the Western front during World War I acquires life-threatening bacterial dysentery from a soldier under her care. At the microscopic scale, inside the young nurse’s GI tract, a battle takes place between the Shigella bacteria who cause the nurse’s life-threatening bacterial dysentery and the bacteriophages who sweep in and defeat the bacteria, saving her life.

Simply presenting these double stories in a scientifically accurate and dramat-

ically compelling way was a major challenge for the collaborative group that created this comic, because the scales of performance needed to be reconciled. As Briony Barr explained, the group had to arrive at a workable way to “show relative scales. For example, how big is a strand of mucus relative to a Shigella bacteria relative to a blood cell?” Their process was collaborative and tag-team, as Barr explained it to me in a series of email interviews. Gregory Crocetti (the microbial Scaling Graphic Medicine

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13.3  Briony Barr et al., The Invisible War: A Tale on Two Scales (Melbourne: Scale Free Network, 2015), cover image.

ecologist) sourced information from scientific papers and scientists themselves, then together Crocetti and Barr (the artist) synthesized that information into sketches that “aim to convey the specifics of scene—the look of characters, their relative size—and to find visual metaphors at a different scale that can be used to describe a far smaller scale. For example, a human in the Grand Canyon was a reasonably good size relationship to a bacterium in the trenches and canyons of the human gut.” Finally, Ben Hutchings (the cartoonist) would synthesize the storyboards, the reference images, and the sketches into a story, all the while adding drama and perspective. Hutchings would choose the scale to emphasize based on his sense of reader interest and identification.23

While images of World War I and the trenches are easily accessible, a range

of images had to serve as reference pictures for Hutchings as he drew the narrative taking place on the microscopic scale. Those ranged from a clip from the Dr. Pathographics

Seuss movie The Lorax and Gustav Doré’s engraving for Jules Verne’s Journey to the Centre of the Earth to a photograph of the famous topographic feature known as the Bungle Bungles, a lumpy range of protuberant rocks in the Red Center of Australia, and a medical slide illustrating “adequate preparation” for a colonoscopy. Fantasy, fiction, geography, and gastroenterology were equally fertile zones of the illustrator’s imagination as he decided how to draw Nurse Annie’s intestines.

We can see how these strategies came together if we compare two sketches

by Hutchings of the episode in which dysentery-ridden soldiers are evacuated from the front lines and travel in a barge down the Somme to the field hospital and the Shigella bacteria shoot down the gut to the small intestine (see fig. 13.4). In the penciled first draft on the left, the prominent upper panel features the Shigella bacteria as they stream down the gut, with the panels in the next tier gradually moving out to Annie’s view of the soldiers (left) and then to the barge going down the Somme (right). In the final version, Hutchings has reversed the placement of the images, drawing us into the narrative first with Annie’s farewell wave on the upper left (the perspective of the human protagonist), then moving us through an aerial view of the Somme on the upper right, before in the double panel in the bottom tier focusing in on the micro-scale world of Annie’s small intestine, where the small collective protagonists, the Shigella bacteria, travel together down their own riverine landscape. At this microscopic scale, not only do we move down the scale from the human to the microbiome, but the assumed subject of this pathography changes, as a new compound identity position is introduced in the process. Annie’s pathography becomes porous as it incorporates the Shigella bacteria and their combatants, the little-known creatures known as bacteriophages, a type of virus that infects bacteria and is “the most numerous biological entity on the planet.”

Given that scaling functions as a powerful aesthetic, rhetorical, and scientific

strategy for making meaning in The Invisible War, I was curious to find out why the group chose the name “Scale Free Network” for their publishing collaborative. Describing scale as “a tool for defamiliarization with the world that we so often take for granted,” Barr explained to me that the main project of the Scale Free Network was to move our perceptions and interests beyond the “human-scale lens.” When the group discovered the term of physicist Albert-László Barabási, “scale free network,” they felt that it precisely captured their interest in drawing together “a diverse ‘network’ of different disciplines/people that could, like a scale free network, grow—but not change its fundamental function as an interdisciplinary collaboration.” They were also charmed by “the wordplay/pun/irony of being ‘scale-free’ since [they] were obviously so interested in the nature of scale and the micro-scale in particular.”24

The use of visual and conceptual scaling in The Invisible War enables Scale Free

Network to reframe human health within a broader biological picture. By reframing the old metaphor (anathema to Susan Sontag) of illness as a battle, the comic uses it to illuminate the entangled struggle for health at the bacterial, human, Scaling Graphic Medicine

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13.4  Draft (left) and final

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version of p. 25 from Briony Barr et al., The Invisible War: A Tale on Two Scales (Melbourne: Scale Free Network, 2015). Courtesy of Briony Barr.

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and global levels.25 This expansive gesture is an essential part of the vision of Scale Free Network, according to Barr. “This ‘human-centric’ mindset limits what we can conceive of in terms of the environment and particularly in relation to what is essentially the ‘invisible majority.’ We humans, as eukaryotes, are very much the 1% as far as biodiversity on this planet is concerned. The other 99% is invisible to us, and yet it surrounds us, is part of us, we are depend[ent] on it and evolved from it.”26 Framing, and then reframing, the war against illness, the reverberant double narratives of The Invisible War come together as one. Incorporating without subsuming the diverse microbiome within the human, this porous pathography upsets the paradox of illness as a battle by portraying it on two scales.

The Scale of the Planet The final collaborative group I interviewed, based in Berlin, works with the biological picture at a global scale. With the support of a number of academic and cultural institutions, Alexandra Hamann, Reinhold Leinfelder, Jens Kirstein, Marc Schleunitz, and a rotating group of additional participants have produced three comics: The Great Transformation: Climate—Can We Beat the Heat?, Anthropocene Milestones (Anthropozän: 30 Meilensteine Auf Dem Weg in Ein Neues Erdzeitalter: Eine Comic-Anthologie), and Eating Anthropocene.27 Just as Scale Free Network affirmed a nonhierarchical mode of interdisciplinary comics creation, so, too, the Berlin collaborative group relied on a “flat organizational process.” While “the project idea and the dominance in developing the project is from Alexandra [Hamann],” the “governance is very flat and open,” Leinfelder explained. Hamann elaborated, “I’d say that except for the funders everyone in her/his field of responsibility [directs the work]. . . . The artists are in charge of their visual style, layout, and to some point also the narrative. Only the funders [the Federal Ministry of Research] have no influence on our work, we were lucky to have total freedom here.”28

Rather than viewing comics as mere information delivery, the Berlin collab-

orative group also shares with Scale Free Network a commitment to getting readers to think for themselves. As Leinfelder explained, “modern societies are a mix of knowledge societies (with knowledge being derived from science as well as from cultural, societal, and personal experience, from beliefs, etc.). . . . [So,] we always see that we address such complex and differentiated societies with comics that are at the same time factual, emotional, psychological, and to some extent “participative” (i.e., not too easy to read . . . but rather challenge the readers to put this all together in their own head, and come up with their own consequences.)”29 Each comic focuses on the era of the Anthropocene, a term that has engendered much debate since it was adopted by atmospheric chemist Paul Crutzen to describe the era in which human activity has had an earth-wide environmental impact.

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The Great Transformation: Can We Beat the Heat? won the Environmental Book of

the Month of the German Environmental Foundation in March 2013 as well as the climate book tip of the German Academy for Children’s and Youth Literature in 216

May 2013. On February 12, 2016, this comic was exhibited on the occasion of the meeting of the Paris Climate Accords. The comic originated as a straightforward attempt at science communication, Hamann explained. It was Leinfelder’s idea, she told me, “to take the members of the WBGU [the German Advisory Council on Global Change] (he was one of them) as protagonists for [what was then] the graphic interview book ‘The great transformation.’”30 At that time, she said, the council members were “working on a flagship report explaining the reasons for the desperate need for a post-fossil economic strategy.” So they grabbed that idea and produced the “‘translation’ of the report as graphic interviews.” Convinced by this “positive experience,” Hamann said, “Reinhold and I got very much involved with comics as a great method to communicate complex scientific content and thus our collaboration went on with new projects.”31

The Great Transformation uses the techniques of scaling and reverberative

narrative to create another porous pathography, this time scaling visually and conceptually between the illness of one little boy and the systemic malady affecting our entire planet. The cover of the comic references Winsor McKay’s Little Nemo in Slumberland, arguably one of the first, and certainly the most masterful, comics to use scaling as a structural principle.32 But here, the feverish little boy is a heavy-headed Earth, sweat beads falling as it holds an icepack to its nodding head, as on the lower right a male hand holds out a thermometer whose temperature ominously approaches 40ºC (see fig. 13.5). The global overheating the cover image documents began with industrialism, according to Nobel Prize–winning chemist Paul Crutzen; thus, the McKay reference is doubly pertinent, since nineteenth-century industry was one of the main targets of McKay’s progressive era cartoons. The chapters that follow register the lasting effects of industrialism, stretching from its impact on human health to the state of the earth itself.

The first chapter, “Why We Need to Transform Ourselves,” draws a parallel

between a hotter earth and a feverish human being once more through the allusion to Little Nemo (see fig. 13.6). Three tiered panels with inset speech balloons make the implications very clear. In the top tier, Hans Joachim Schnellnhuber, director of the Potsdam Institute for Climate Impact Research, explains the how the 2ºC Climate-Protection Guardrail has been created as a standard for combatting global climate change. One of the square speech balloons links his panel to the one beneath it, where Barack Obama stands at his Oval Office desk, confiding to a telephone caller his concern that progress on the international effort to halt climate rise “is not as substantial as it needs to be.” In the bottom tier, we see once again the Nemo-esque cover image: the ice-pack-crowned, pajamaed, sweating Earth, framed by the hand holding the thermometer. But this time a text box gives the compound image its full significance: “If the temperature exceeds 40ºC, one organ after the other breaks down, and finally the whole

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13.5  Little Nemo–inspired

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cover of Alexandra Hamann, Claudia Zea-Schmidt, and Reinhold Leinfelder, The Great Transformation: Climate—Can We Beat the Heat? (Berlin: Verlagshaus Jacoby and Stuart, 2013).

human system collapses.” The implications are inescapable: the pajamaed Earth, like the human system, is on the verge of collapse.

In the chapter “Hot Stuff: Climate Change,” a broad top-tier panel shows phys-

icist Stefan Rahmstorf, who studies “the role of the oceans in climate change,” walking along the shore toward a “workshop on coastal protection in Nag’s Head [North Carolina]” (see fig. 13.7). In what appear to be thought bubbles, a solitary Rahmstorf speculates on the increasing risk of extreme weather, floods, droughts, and forest fires. A second thought bubble leads us to the broad bottom panel as he considers the impact of such extreme weather on water supply, food, and food security. Models and data, he muses, reveal that rising sea temperatures cause stronger and more frequent hurricanes. What this means is shown in vivid detail in the wide bottom panel. On its left, apocalyptic landscapes in tiered panels with captions noting date and place of fires, floods, and drought are overlain onto the image of victims of Hurricane Katrina, seen as if from a helicopter, on the rooftop of a flooded building. They stand, arms akimbo, mouths wide in a cry for rescue. Beneath them on the rooftop a scrawled sign reads: “The Water is Rising!” The message is meant not only for their rescuers but for we the readers: Scaling Graphic Medicine

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13.6  Climate change scaled up from the human system to the earth system. From Alexandra Hamann, Claudia Zea-Schmidt, and Reinhold Leinfelder, The Great Transformation: Climate—Can We Beat the Heat? (Berlin: Verlagshaus Jacoby and Stuart, 2013).

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13.7  Alexandra Hamann, Claudia Zea-Schmidt, and Reinhold Leinfelder, The Great Transformation: Climate—Can We Beat the Heat? (Berlin: Verlagshaus Jacoby and Stuart, 2013), 45.

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to care for human health, these images imply, requires that we also care about climate change. 220

The Berlin group continued its examination of the relationship between

climate change and industrial technologies in Anthropocene Milestones (Anthropozän 30 Meilensteine auf Dem Weg in Ein Neues Erdzeitalter, Eine Comic-Anthologie) a comic coproduced by Alexandra Hamann, Henning Wagenbreth, Reinhold Leinfelder, and Helmuth Trishler with the support of the Rachel Carson Center, Berlin, and the German Federal Foundation for the Environment (Deutsche Bundesstiftung Umwelt). Here, the collaboration was between Hamann, the storyboarder and science communicator; Henning Wagenbreth, professor of illustration at the University of the Arts in Berlin; and the students in Wagenbreth’s illustration classes over the winter semester 2013–14. Each student chose an object on permanent display in the German Museum in Munich and created an eight-panel comic strip dramatizing how that technical object contributed to the era of the Anthropocene. Then the comics were bundled together in a handsome volume published by the Deutsches Museum Verlag. Once again, the history of comics helped the cartoonists imagine ways of animating the discussion of climate change. For example, in cartoonist Martyna Zalalate’s comic Super Paul vs. FCKW, Paul Crutzen becomes a caped, flying “Super Paul, who defends the earth’s ozone layer against the villain, Chlorofluorocarbon.”33

Eating Anthropocene, the most recent comic created by the Berlin group, is

the result of what the editors call “a global experiment.” In order to explain the effect of global climate instability on our entire food system, the comic offers ten graphic narratives that detail the scientific, social, cultural, and psychological factors that make finding adequate nutrition a worldwide challenge in the Anthropocene era. The work of creating these twelve comics was elaborate. First, “ten individuals from ten countries on five continents” carried out interviews with local people who told them how people ate in those regions. Then, twelve artists worked to create the comics; they were chosen by the Berlin group because they came from the regions where their stories were sited. Blending individual experiences with scientific facts, the comics’ linking concept was the precarity of our current food system, due to the global vulnerability to climate instability and our increasing reliance on phosphorus-based fertilizer. Beginning with Uganda, where it has become increasingly difficult to find nutritious food as the country is moving from a rural to an increasingly urban lifestyle, the collection concludes with a comic set right in Berlin. During a celebration of science communication called “The Long Night of Science,” a young biology student at the Freie Universität shares with her colleagues a cake she has made herself. It is a traditional German recipe, “Bienenstich” (or bee sting) cake. But the cake delivers a sting of surprise that fits the theme of the event, because it contains bee larvae. In order to eat adequately in the Anthropocene, the comic insists, we will need to come up with more diverse and more accessible food sources.

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13.8  Marina Zurkow, “Nimble

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Foods for Climate Chaos,” 2019. https://​www​.ioes​.ucla​.edu​ /project​/nimble​‑foods​‑climate​ ‑chaos.



This vision of insects as a necessary new food source now in the era of Anthro-

pocene-related nutritional precarity connects the Bienenstich cake in Eating Anthropocene to the graphic “Eat Nimbly,”34 the product of a collaboration between United States artists Marina Zurkow and her collaborators Monica Bravo, Xuedi Chen, Negar Behbahani, and Medi Semanti (see fig. 13.8). Zurkow describes this stunning image as “a nod to Masonic imagery that takes an admittedly obtuse look at how someone in Los Angeles might approach the food system (pyramid) in new ways. Using foods that have been eaten by both native and immigrant cultures here—jellyfish—agave—seaweeds—amaranth—prickly pear—crickets . . . with a pollinator thrown in too.”35

Conclusion Any representation, evaluation, or literary reading assumes a certain temporal or social scale, as Timothy Clark observes in an epigraph to this essay. I have focused on these three graphic collaborations in Glasgow, Melbourne, and Berlin because they testify to the way that a collaborative process—multiperspectival by its very nature—can force us to challenge the unconscious assumption that pathography belongs only at the scale of the human being. As they illuminate the spaces between human lives, showing the intimate entanglements that link all human beings not just to each other but also to the other 99 percent of biodiversity and to the earth “on which we all depend,” the comics created by these collaborative groups scale up graphic medicine by creating another kind of illness narrative: a porous pathography. I draw this term from an image that testifies

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13.9  Marina Zurkow, Oliver Kelhammer, and Una Chaudhuri, “Power to the Porous,” 2019. From Dear Climate, https://​www​.dearclimate​. net​/posters.

to the multiple subjectivities and scales at which they imagine this, the Earth’s illness narrative (see fig. 13.9).

Una Chaudhuri, Oliver Kelhammer, and Marina Zurkow are not only the

creators of “Power to the Porous,” their image that shows the entanglements linking human beings to the 99 percent of other biodiversity, from psilocybin mushrooms, frogs, and bees, to plantains, frog spawn, lilies, flies, roots, and tendrils.36 They are also the collaborators behind “Dear Climate,” a project spanning art installations, epistolary-novels-in-process, and posters or, as I prefer to see them, comics. Designed as a series of one-panel graphics to be wheat-pasted on buildings, telephone poles, wherever an urban bystander might come across them, this accretive installation is a mobile, open-source, interactive comic-asprocess. A next-gen companion to the new kinds of comics I have discussed in this essay, “Dear Climate’s” quirky images and texts are designed to shift the conversation about climate change to include its impact not only on the health of human beings but on the whole biosphere, prompting reflection and action. As the website explains, “Dear Climate dwells on the deep entanglements of our species with not only animals, but also plants, minerals, organic matter and the bio-geo-physical systems (including climate) that govern the Earth. Encountering this poster, the viewer is encouraged to consider the following questions: Can you give up some of your separateness? Can you take other forms and merge with Pathographics

other beings? Can you have less distinct edges? Can you embrace your inherent porousness as an earthly organism?”37

Introducing the concept of the porousness of identity, this final comic inter-

vention makes explicit what all of these new works bring to graphic medicine: the use of scaling, control of perspective, and reverberative narratives to create a porous pathography—one that speaks for the whole biosphere. They bring into a new medium and a new century Anne Hunsaker Hawkins’s 1999 vision of the “ecopathography,” encouraging us to consider what we can learn from works in which the patient is not only the individual suffering from environmental illness but the environment and indeed the world itself.

Notes 1. This concept was first identified in 2007 by British physician and cartoonist Ian Williams, and is explained in detail in MK Czerwiec et al., Graphic Medicine Manifesto (University Park: Pennsylvania State University Press, 2015). 2. Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography (West Lafayette: Purdue University Press, 1999), 127. 3. Ibid., 129. 4. See https://‌www‌.merriam‌‑webster‌.com ‌/dictionary‌/porous. 5. Many such pathographies have come out in the past four years, and each one could be the subject of an extensive analysis. They include Sherene Hamdy and Coleman Nye, Lissa: A Story About Medical Promise, Friendship, and Revolution (Toronto: University of Toronto Press, 2017); Meredith Li-Vollmer and David Lasky, No Ordinary Flu (Seattle: King County Department of Public Health, 2016); Marina Zurkow and Valerie Vogrin, The Petroleum Manga (Brooklyn: Peanut Books, 2014); Olivier Kugler, Escaping Wars and Waves (University Park: Pennsylvania State University Press, 2018); and El Viaje mas caro / The Most Costly Journey (Vermont: Vermont Folklife Center) by cartoonists working with the Vermont Folklife Center. However, because of the European and global commitments of the PathoGraphics project, I have chosen to focus on non-U.S.-situated collaborations in this essay. 6. This group includes cartoonist Edward Ross, science communicator Cathy Southworth, science fiction writer Ken McCleod, biologist Jamie Hall, and public engagement officer at the Wellcome Center for Molecular Parasitology Vicki Hall. 7. This group comprises artist Briony Barr, microbial ecologist Gregory Crocetti, arts educator Jacqueline Smith, writer Ailsa Wild, illustrator Ben Hutchings, and microbiologist Jeremy Barr.

8. This group, which focuses on health understood in relation to the era of the Anthropocene and global climate change, includes storyboarder and science communicator Alexandra Hamann, geologist Reinhold Leinfelder, geologist Jens Kirstein, and biologist Marc Schleunitz. 9. Scott Bukatman, The Poetics of Slumberland: Animated Spirits and the Animating Spirit (Berkeley: University of California Press, 2012), 196. 10. C. Gibson, E. Ostrom, and T. K. Ahn, “The Concept of Scale and the Human Dimensions of Global Change: A Survey,” Ecological Economics 32, no. 2 (2000): 218. 11. Therese Jones, Delese Wear, and Lester Friedman, introduction to Health Humanities Reader (New Brunswick: Rutgers University Press, 2014), 7. 12. Sayantani Dasgupta, “Listening as Freedom: Narrative, Health, and Social Justice,” in Health Humanities Reader, ed. Therese Jones, Delese Wear, and Lester D. Friedman (New Brunswick: Rutgers University Press, 2014), 253. 13. Susan Squier, “Literature and Medicine, Future Tense: Making it Graphic,” Literature and Medicine 27, no. 2 (2008): 127, and Timothy Clark, Ecocriticism on the Edge: The Anthropocene as a Threshold Concept (London: Bloomsbury, 2015), 74. 14. Jamie Hall, Rachel Morris, and Edward Ross, Parasites! (Glasgow: University of Glasgow Wellcome Trust Centre for Molecular Parasitology, 2010). 15. Edward Ross explained this to host Alex Fitch on the Resonance 104.4 FM podcast Panel Borders. https://‌panelborders‌.wordpress‌.com ‌/2013‌/06‌/10‌/panel‌‑borders‌‑parasites‌‑stem‌‑cells‌ ‑and‌‑microbes. 16. Ibid. 17. Edward Ross, personal interview, March 21, 2018. 18. Ibid.

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224

19. Hall, Morris, and Ross, Parasites!, 3. 20. For a somewhat different take on this comic, see Susan Squier, “Parasites! Graphic Exploration of Tropical Disease Drug Development,” American Medical Association Journal of Ethics 20, no. 2 (2018): 167–75, and Sarah de Leeuw et al., “Geographies of Medical and Health Humanities: A Cross-Disciplinary Conversation,” GeoHumanities 4, no. 2 (2018): 285–334. 21. B. Barr et al., The Invisible War: A Tale on Two Scales (Melbourne: Scale Free Network, 2015), https://‌theinvisiblewar‌.com‌.au‌/team. 22. See https://‌en‌.oxforddictionaries‌.com ‌/definition‌/reverberate. 23. B. Barr, personal communication, February 8, 2018. 24. Ibid. 25. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978). 26. B. Barr, personal communication, February 8, 2018. 27. Alexandra Hamann, Claudia Zea-Schmidt, and Reinhold Leinfelder, The Great Transformation: Climate—Can We Beat the Heat? (Berlin: Verlagshaus Jacoby and Stuart, 2013); Alexandra Hamann, Reinhold Leinfelder, and Henning Wagenbreth, Anthropozän: 30 Meilensteine Auf Dem Weg in Ein Neues Erdzeitalter: Eine Comic-Anthologie (Munich: Deutsches Museum Verlag, 2014); and Reinhold Leinfelder, Alexandra Hamann, Jens Kirstein, and Marc Schleunitz, Eating Anthropocene: Curd Rice, Bienenstich and a Pinch of Phosphorus—Around the World in Ten Dishes (Berlin: Springer, 2016). 28. Alexandra Hamann and Reinhold Leinfelder, personal communication, 2017.

29. Reinhold Leinfelder, personal communication, 2017. 30. Alexandra Hamann, personal communication, February 18, 2018. 31. Ibid. Dagmar Röhrlich, “Science in the Focus,” Deutschlandfunk.de, 17.3.2013, ca. 16:55. “The nine speakers here in 2011 were authors of the more than four-hundred-page original report, “World in Transition: Social Contract for a Great Transformation”: “And while only a few people read this work written in the usual dust-dry language, the comic that has become of it will be very different. Complex relationships on 140 pages with black-and-white drawings are explained here in a relaxed and comprehensible way: easy to read, but still full of facts and ideas, which makes pondering worthwhile. The afternoon spent with this comic is gained time.” http://‌www.die‌‑grosse‌ ‑transformation‌.de‌/p‌/blog‌‑page‌_14‌.html. 32. See Winsor McKay, “Little Nemo in Slumberland”: Splendid Sundays!, ed. Peter Maresca (Palo Alto, Calif.: Sunday Press Books, 2005). 33. Martyna Zalalyte, “MIPAS,” in Anthropozän: 30 Meilensteine Auf Dem Weg in Ein Neues Erdzeitalter: Eine Comic-Anthologie, ed. Alexandra Hamann, Reinhold Leinfelder, and Henning Wagenbreth (Munich: Deutsches Museum Verlag, 2014), 71. 34. Marina Zurkow, “Nimble Foods for Climate Chaos,” 2019, https://‌www‌.ioes‌.ucla‌ .edu‌/project‌/nimble‌‑foods‌‑climate‌‑chaos. 35. Marina Zurkow, personal communication, Facebook, July 11, 2018. 36. Marina Zurkow, Oliver Kelhammer, and Una Chaudhuri, “Power to the Porous,” 2019, https://‌www‌.dearclimate‌.net‌/posters. 37. See https://‌www‌.dearclimate‌.net.

References Barr, B., G. Crocetti, A. Wild, J. Barr, and B. Hutchings. The Invisible War: A Tale on Two Scales. Melbourne: Scale Free Network, 2015. https://‌theinvisiblewar. com‌.au‌/team. Bukatman, Scott. The Poetics of Slumberland: Animated Spirits and the Animating Spirit. Berkeley: University of California Press, 2012. Clark, Timothy. Ecocriticism on the Edge: The Anthropocene as a Threshold Concept. London: Bloomsbury, 2015. Czerwiec, MK, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith. Graphic Medicine Manifesto. University Park: Pennsylvania State University Press, 2015.

Pathographics

Dasgupta, Sayantani. “Listening as Freedom: Narrative, Health, and Social Justice.” In Health Humanities Reader, edited by Therese Jones, Delese Wear, and Lester D. Friedman, 251–60. New Brunswick: Rutgers University Press, 2014. Gibson, C., E. Ostrom, and T. K. Ahn. “The Concept of Scale and the Human Dimensions of Global Change: A Survey.” Ecological Economics 32, no. 2 (2000): 217–39. Hall, Jamie, Rachel Morris, and Edward Ross. Parasites! Glasgow: University of Glasgow Wellcome Trust Centre for Molecular Parasitology, 2010. Hamann, Alexandra, Reinhold Leinfelder, and Henning Wagenbreth. Anthropozän: 30 Meilensteine Auf Dem Weg in Ein Neues Erdzeitalter: Eine Comic-Anthologie.

Munich: Deutsches Museum Verlag, 2014. Hamann, Alexandra, Claudia Zea-Schmidt, and Reinhold Leinfelder. The Great Transformation: Climate—Can We Beat the Heat? Berlin: Verlagshaus Jacoby and Stuart, 2013. Hamdy, Sherene, and Coleman Nye. Lissa: A Story About Medical Promise, Friendship, and Revolution. Toronto: University of Toronto Press, 2017. Hawkins, Anne Hunsaker. Reconstructing Illness: Studies in Pathography. West Lafayette: Purdue University Press, 1999. Jones, Therese, Delese Wear, and Lester Friedman. Introduction to Health Humanities Reader, 1–9. New Brunswick: Rutgers University Press, 2014. Kugler, Olivier. Escaping Wars and Waves. University Park: Pennsylvania State University Press, 2018. Leeuw, Sarah de, Courtney Donovan, Nicole Schafenacker, Robin Kearns, Pat Neuwelt, Susan Merrill Squier, Cheryl McGeachan, Hester Parr, Arthur W. Frank, Lindsay-Ann Coyle, Sarah Atkinson, Nehal El-Hadi, Karen Shklanka, Caroline Shooner, Diana Beljaars, and Jon Anderson. “Geographies of Medical and Health Humanities: A Cross-Disciplinary Conversation.” GeoHumanities 4, no. 2 (2018): 285–334. Leinfelder, Reinhold, Alexandra Hamann, Jens Kirstein, and Marc Schleunitz. Eating Anthropocene: Curd Rice, Bienenstich and a Pinch of Phosphorus—Around the World in Ten Dishes. Berlin: Springer, 2016.

Li-Vollmer, Meredith, and David Lasky. No Ordinary Flu. Seattle: King County Department of Public Health, 2016. McKay, Winsor. “Little Nemo in Slumberland”: Splendid Sundays! Edited by Peter Maresca. Palo Alto, Calif.: Sunday Press Books, 2005. Sontag, Susan. Illness as Metaphor. New York: Farrar, Straus and Giroux, 1978. Squier, Susan. “Literature and Medicine, Future Tense: Making it Graphic.” Literature and Medicine 27, no. 2 (2008): 124–52. ———. “Parasites! Graphic Exploration of Tropical Disease Drug Development.” American Medical Association Journal of Ethics 20, no. 2 (2018): 167–75. El Viaje mas caro / The Most Costly Journey. Vermont: Vermont Folklife Center, 2019. Zalalyte, Martyna. “MIPAS.” In Anthropozän: 30 Meilensteine Auf Dem Weg in Ein Neues Erdzeitalter: Eine Comic-Anthologie, edited by Alexandra Hamann, Reinhold Leinfelder, and Henning Wagenbreth. Munich: Deutsches Museum Verlag, 2014. Zurkow, Marina, and Valerie Vogrin. The Petroleum Manga. Brooklyn: Peanut Books, 2014.

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contributors Einat Avrahami is a leading specialist on narrative medicine and has been teaching courses and conducting workshops on literature and medicine and narrative medicine for the past thirteen years in Israel’s main faculties of medicine, including Tel Aviv University, the Technion—Israel Institute of Technology in Haifa, the Hebrew University of Jerusalem, the nursing department at the University of Haifa, and the nursing school at Tel-HaShomer University Hospital. Her publications include The Invading Body: Reading Illness Autobiographies (2007), and her research on narrative medicine has been published in Literature and Medicine, Narrative, and the Israel Medical Association Journal, among others. In addition, she has edited a special issue on medicine and the humanities in The European Legacy 16, no. 3 (2011) and a collection of stories of family caregivers, Standing by Them (2017). Since 2011, she has been coeditor (with Dr. Andre Matalon) of six volumes of Doctors’ Stories: Humanism in Family Medicine (2011–19). Maureen Burdock is a feminist artist. She is the creator of Feminist Fables for the Twenty-First Century: The F Word Project (2015), a series of graphic fables that address forms of gender-based violence in different cultures. She earned an MFA in studio art and an M.A. in visual and critical studies from the California College of the Arts in San Francisco, and is now working on The Baroness of Have-Nothing, her graphic dissertation in the cultural studies Ph.D. program at the University of California–Davis. Elizabeth J. Donaldson is associate professor of English at New York Institute of Technology, where she directs the medical humanities minor program. Her edited collections include The Madwoman and the Blindman: Jane Eyre, Discourse, Disability (2012) and Literatures of Madness: Disability Studies and Mental Health (2018), and she is currently at work on a monograph that focuses on psychiatry and American literature. Ariela Freedman is an associate professor at the Liberal Arts College, Concordia University, Montreal. She has published widely on modernism, trauma, and comics and graphic novels. She would like to thank the Berlin Pathographics team and SSHRC for support of this project. Rieke Jordan is assistant professor in the Department of English and American Studies at Goethe-University Frankfurt. She holds a Ph.D. in North American studies from the Graduate School of North American Studies at the Freie Universität Berlin.

Irmela Marei Krüger-Fürhoff is professor of German Literature at Freie Universität Berlin. Her main fields of interest include eighteenth-to-twenty-first-century literature with a focus on the interrelations between literary and medical knowl228

edge. She is the academic lead of the 2016–21 PathoGraphics research project, which analyzes the aesthetics and politics of illness narratives in contemporary comics and literature (“Graphic medicine and literary pathographies,” www​ .fsgs​.fu​‑berlin​.de​/pathographics). She has published on transplantation surgery in literature, film, medicine, and public discourse (Verpflanzungsgebiete: Wissenskulturen und Poetik der Transplantation, 2012) and medical, aesthetic, and literary approaches to wounded bodies around 1800 (Der versehrte Körper: Revisionen des klassizistischen Schönheitsideals, 2001). Her most recent English book chapter is on the ethics and aesthetics of narrating Alzheimer’s disease. stef lenk is a Canadian illustrator based in Berlin. She has been producing (mostly wordless) graphic narratives since 2005 and has an MSc in medical illustration. She is interested in the practical application of academic research to graphic novels and illness narratives, and brings ten years of experience within the comics and publishing industry to her work with the PathoGraphics project. Leah Misemer is a Marion L. Brittain Postdoctoral Fellow at the Georgia Institute of Technology. She is interested in how readers form communities through serial comics and has published articles in Composition Studies and Forum for World Literature Studies as well as an essay in Comics Studies Here and Now (2018). Tahneer Oksman is an associate professor of academic writing at Marymount Manhattan College, the author of “How Come Boys Get to Keep Their Noses?” Women and Jewish American Identity in Contemporary Graphic Memoirs (2016), and the coeditor of the anthology The Comics of Julie Doucet and Gabrielle Bell: A Place Inside Yourself (2019). She is currently writing a book on autobiographical representations of grief. Nina Schmidt is a postdoctoral researcher at the Freie Universität Berlin for “Graphic Medicine and Literary Pathographies: The Aesthetics and Politics of Illness Narratives in Contemporary Comics and Literature.” Her post is funded by the Einstein Foundation Berlin. Nina holds a Ph.D. in German from the University of Sheffield. In June 2018, she published her first monograph—entitled The Wounded Self: Writing Illness in Twenty-First-Century German Literature—with Camden House. Helen Spandler is a professor in mental health studies at the University of Central Lancashire. She has written extensively about mental health politics, practice, and policy, most recently coediting Madness, Distress and the Politics of Disablement (2015). She is now the managing editor of Asylum Magazine and is keen to solicit more graphics, cartoons, and comics http://​asylummagazine​.org. Susan Merrill Squier is Julia Gregg Brill Professor Emerita of English and Women’s, Gender, and Sexuality studies at the Pennsylvania State University, and Einstein contributors

Visiting Fellow at the Freie Universität Berlin (2016–21). Her publications include Epigenetic Landscapes: Drawings as Metaphor (2017); Graphic Medicine Manifesto (2015), coauthored with MK Czerwiec, Ian Williams, Michael J. Green, Kimberly R. Myers, and Scott T. Smith; Poultry Science, Chicken Culture: A Partial Alphabet (2011); Liminal Lives: Imagining the Human at the Frontiers of Biomedicine (2004); and Babies in Bottles: Twentieth-Century Visions of Reproductive Technology (1994). She is founding president of the Graphic Medicine International Collective and coedits the Graphic Medicine book series published by Penn State University Press.

contributors

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Index Page references in italics denote illustrative material. Abel, Jessica, 181 abortion. See selective abortion agency and autonomy, 87–89, 179, 181–84 Alaimo, Stacy, 203n12 Allan, Von, The Road to God Knows…, 162, 170n39 Anspach, Renee R., 10 Anthropocene era, 215 Anthropocene Milestones, 215, 220 Arbeit und Struktur (Herrndorf), 46–50, 47, 48, 57n33, 57n42 Arkham Asylum (Batman), 155–56 art, and science, 178–79, 208, 211–12 artificial naturalness, 88 Asch, Adrienne, 20n39 Ashbery, John, “This Room,” 28 assembly, as concept, 24, 35 Asylum (magazine), 116 See also psychiatric contention Asylum Squad (Saraƒin), 160 Attridge, Derek, 45 Autobiography of a Face (Grealy), 23 The Bad Doctor (Williams), 157 Baker, Connie, 61 Ball, David M., 112n3 Banita, Georgiana, 108–9 Barabási, Albert-László, 213 Barad, Karen, 195, 203n12 The Baroness of Have-Nothing (Burdock) overview, 188 familial displacement in, 192, 192–94 fragmentation in, 197, 198, 199, 199–202, 201 Barr, Briony, 211–12, 213, 215, 223n7 Barr, Jeremy, 223n7 Barrington, Judith, Lifesaving, 23 Barthes, Roland, 50, 102 Batman’s Arkham Asylum, 155–56 Bechdel, Alison, Fun Home, 157 Behbahani, Negar, 221 beholding, 43, 55 See also stare, the Bell, Charles, 67

Berman, Jeffrey, 27 Berman, Margaret Fink, 105, 107–8, 112n1, 113n10 Bérubé, Michael, 170n36 Biggers, Sanford, 67–68 Binky Brown Meets the Holy Virgin Mary (Green), 156–57, 169n19 Birge, Sarah, 107, 108 Birkbeck Pain Project, 60 Biss, Eula, 64–65, 66–67 Bitter Medicine (Martini and Martini), 162, 163 Bladek, Marta, 25 body absences and presences of, 102–6 as binary system, 78–81 as structuring metaphor, 106–10 vulnerability of, 111–12 Bourke, Joanna, 59, 60, 71–72 BPD (borderline personality disorder), 122 Bradford-Lee, Sheree, 127 Bravo, Monica, 221 Brick (John Stuart Clark), Depresso, 158 Brooks, Peter, 45, 55 Brosh, Allie, Hyperbole and a Half, 63, 63, 128, 157 Brown, Chester, “My Mom Was a Schizophrenic,” 161 Büchner, Georg, Danton’s Death, 86 Building Stories (Ware) overview, 100–102 absent/present dichotomy in, 102–6, 110, 113n10 protagonist’s face, 112n1, 113n11 segmented structure, 106–10, 113n27 Burdock, Maureen. See The Baroness of Have-Nothing Cancer Vixen (Marchetto), 56n23 Can’t We Talk About Something More Pleasant? (Chast), 37n47 Cardell, Kylie, 37n34 Carrington, Leonora, 187 cartoons, as style, 116, 126–29 See also graphic narrative and comic medium; psychiatric contention case presentation language, 10 The Center Cannot Hold (Saks), 153

232

Chast, Roz, Can’t We Talk About Something More Pleasant?, 37n47 Chaudhuri, Una, 222, 222 Chen, Xuedi, 221 “Chronic Pain Drawing Diary” (Knight), 68–70, 69 Chute, Hillary, 190 Clark, Timothy, 205, 221 Clean, Shaven (film), 169n32 Clell, Madison, Cuckoo, 157–58 climate change, 215–21, 217, 218, 219, 221, 222, 222–23 collaborative graphic projects on environmental issues, 215–21, 217, 218, 219, 221, 222, 222–23 on microbiome vs. humans, 211–15, 212, 214 on parasitic disease, 208–9, 210, 211 on schizophrenia, 162–68, 163, 164, 166–67 Comer, Todd A., 113n16 comics. See graphic narrative and comic medium commercialized sex, 143–47, 144, 145 community formed through serial narrative medium, 136–39, 147–49 and grief, 33 and relational autonomy, 91 correspondence zones as concept, 137–39 external, 140, 147–49 internal, 139–42, 144–46 Couser, G. Thomas, 45, 165 criminality, 155–56, 158, 159, 169n14 Crocetti, Gregory, 211–12, 223n7 Crutzen, Paul, 215, 216 Cunningham, Darryl, Psychiatric Tales, 158, 159 curation, of identity, 195, 203n7 Danton’s Death (Büchner), 86 Das, Veena, 64 Dasgupta, Sayantani, 207 Davis, Lennard J., 39, 40, 41, 55n2 Davison, Al, 60 The Spiral Cage, 56n23 deafening silence, 136 deep brain stimulation, 75, 83–89, 84 Deep in the Brain (Dubiel), 76, 77, 78, 81, 86–93 Depresso (Brick), 158 Descartes, René, 81 diaries, 37n34, 46–55

Index

Dickinson, Emily, 59 disability and illness body, conceptions of. See body ethical considerations. See ethics mental. See mental illness pain of. See pain and suffering Parkinson’s disease. See Parkinson’s disease selective abortion. See selective abortion staring at those with. See stare, the disability gain, defined, 4 disidentification, 204n20 Diski, Jenny, Skating to Antarctica, 23 Donovan, Courtney, 189 Don’t Go Where I Can’t Follow (Nilsen) overview, 24 absent presence in, 28–30 as collection of travel stories, 25–26 community in, 31–35 depictions of ill lover in, 30–31, 37n48 publication of, 36n8, 37n32 variety of perspectives in, 26–28 Dubiel, Helmut, Deep in the Brain, 76, 77, 78, 81, 86–93 Dunlap-Shohl, Peter, My Degeneration, 76, 79–83, 80, 82, 84, 85, 90, 91–95, 92, 94 Du stirbst nicht (Schmidt), 43, 44–45, 48–49, 51, 53–54, 56n29 Eating Anthropocene, 215, 220 Echoes (Fialkov), 158–60, 161 ECT (electroconvulsive therapy), 117–19, 118, 128 Ekedal, Rahsan, 158 El Refaie, Elisabeth, 40, 42, 46, 56n23 The End (Nilsen), 36n11 environmental issues, 215–21, 217, 218, 219, 221, 222, 222–23 ethics and case presentation language, 10 of deep brain stimulation, 75 in genetic testing and consultation, 7–8, 12–14, 18–19, 19–20n12 of individual choice, 7, 14 and narrative mode, 7–8, 15, 18–19, 20n36, 20–21n43 of selective abortion, 7–8, 12–14, 18–19, 19–20n12, 20n36, 20–21n43 as socially embedded, 14–15 of speaking on behalf of disabled, 165, 170n36 The Faraway Nearby (Solnit), 23 feminization, of disabled figures, 111

Fialkov, Joshua, Echoes, 158–60, 161 Fies, Brian, 60 Fitch, Alex, 208 Forney, Ellen, Marbles: Mania, Depression, and Me, 96n28, 157 Fowler, Kathleen, 36n4, 36n15 Fraction, Matt. See Sex Criminals Frank, Arthur, 126, 127, 128, 132n34 Freedman, Ariela, 107 Freedman, Matt, Relatively Indolent but Relentless: A Cancer Treatment Journal, 50–55, 52, 53, 54 Fuechsel, Charles F., 187–88 Fun Home (Bechdel), 157 Gallardo, Miguel, María y yo, 40, 40–42, 41, 42, 43, 57n52 Gardner, Jared, 169n19 Garland-Thomson, Rosemarie, 39–40, 43, 45, 55, 56n30, 111, 113n17 Gaucher’s disease, 9–14, 20n19 gaze, the, 39–42, 40, 41, 42, 43 See also stare, the gender disabled figures as feminized, 111 and pain measurements, 67 and psychiatric survivors, 117–18, 122, 130 See also sex and sexuality genetic testing and counseling. See selective abortion Gilbert, Sandra M., 35 Gino, Francesca, 36n7 Gloeckner, Phoebe, 169n19 Goffman, Erving, 55n2 “Golden Opportunity” (Ware), 111–12 Goodwin, John, 155 Graphic Medicine International Collective, 2, 3 Graphic Medicine Manifesto, 137 graphic narrative and comic medium autobiographical genre, 156–57, 169n19 collaborations. See collaborative graphic projects medical illustration discipline, 178–79 seriality, 136–37. See also correspondence zones suitability for disability representations and destigmatizing, 107–9, 158. See also body; schizophrenia; stare, the suitability for pain language, 60. See also pain and suffering suitability for resistance and critique, 115, 129–31. See also psychiatric contention

suitability for trauma exploration, 188, 189–91. See also path-making and mapping wordless comic genre, 185 graphics, as term, 2–3 Grealy, Lucy, Autobiography of a Face, 23 The Great Transformation: Can We Beat the Heat?, 215, 216–20, 217, 218, 219, 224n31 Green, Justin, Binky Brown Meets the Holy Virgin Mary, 156–57, 169n19 grief and community, 33 and identity, 27, 37n30 and imaginal relationships, 28 as journey, 25 grief memoirs, as genre, 23–24, 35, 36n4, 36n15, 36n17 See also Don’t Go Where I Can’t Follow Haines, Steve, Pain is Really Strange, 72 Hall, Jamie, 208–9, 223n6 Hall, Vicki, 223n6 Hamann, Alexandra, 215, 216, 220, 223n8 Hamsun, Knut, 47–48 Haraway, Donna, 203n12 Hashiloni-Dolev, Yael, 19–20n12, 20nn19– 20 Hatfield, Charles, 157 Hawkins, Anne Hunsaker, 205–6 Hayward, Jennifer, 136 Heer, Jeet, 113n27 Herrndorf, Wolfgang, Arbeit und Struktur, 46–50, 47, 48, 57n33, 57n42 Herr Parkinson (Wagner), 76–77, 78–79, 81, 83–85 H is for Hawk (Macdonald), 23 Ho, Anita, 9 HOAX: Our Right to Hope (Thornton), 162–65, 164, 166–67, 170n44, 170–71n46 Höch, Hannah, 197–99 Hoffman, Eva, 200 Hopper, Jessica, 36n22 Hornschemeier, Paul, Mother, Come Home, 158, 169n27 The Hospital Suite (Porcellino), 70–72, 71, 157 Hustvedt, Siri, 66 Hutchings, Ben, 212, 223n7 Hyperbole and a Half (Brosh), 63, 63, 128, 157 identity and self agency and autonomy, 87–89, 179, 181–84 curation of, 195, 203n7

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234

identity and self (continued) of disabled physician, 11–14 formed by relationships, 15–18 and grief, 27, 37n30 and memory, 188–89, 191, 195–96, 202 self-estrangement dimension of Parkinson’s, 78–81 self-image, 44–45, 51–54 See also community Illich, Ivan, 88 illness. See disability and illness imaginal relationships, 28 The Invisible War, 211–15, 212, 214 Irving, Christopher, 104 Israel, prenatal care in, 8–9 Jakoby, Nina R., 33 Jamison, Kay Redfield, Nothing Was the Same, 25 Jimmy Corrigan (Ware), 108–9, 113n30 Jurecic, Ann, 23–24, 35, 36n6 Kannai, Ruth, 8, 9–14, 15–18 Kelhammer, Oliver, 222, 222 Kinchin, Lucie, Louise’s A to Z of Parkinson’s (with Palmer), 76, 77, 78, 79, 83 Kindheitsmuster (Wolf), 195–96 Kirstein, Jens, 215, 223n8 Knight, Paula, 60 “Chronic Pain Drawing Diary,” 68–70, 69 Koch, Christina, 157 Køhlert, Frederik Byrn, 56n30, 151n14 Kominsky-Crumb, Aline, 169n19 Den Kopf öffnen (Schmidt), 76, 77, 78, 81, 83, 85–87 Krause, Franziska, 88 Kristeva, Julia, 112n9 Krüger-Fürhoff, Irmela Marei, 170n46 La Mettrie, Julien Offray de, 81 language and bilingualism, 200 of case presentation, 10 of pain, overview, 59–60 and wordless comics, 185 Laocoön, 67–68 Latour, Bruno, 35 Leinfelder, Reinhold, 215, 216, 220, 223n8 Lejeune, Philippe, 47, 76 lenk, stef on medical illustration discipline, 178–79 The Quickening, 174–77, 179–85 Lifesaving (Barrington), 23 listening, as concept, 35

Index

Little Nemo in Slumberland (McKay), 216 Lorde, Audre, 131 Louise’s A to Z of Parkinson’s (Palmer and Kinchin), 76, 77, 78, 79, 83 Lund, Michael, 136 Luzzi, Joseph, 25 Macbeth (Shakespeare), 85 Macdonald, Helen, H is for Hawk, 23 Macfarlane, Robert, 190, 203 Madden, Matt, 181 madness, as term, 116 See also mental illness Mad Studies project, 116, 128–29 mapping. See path-making and mapping Marbles: Mania, Depression, and Me (Forney), 96n28, 157 Marchetto, Marisa Acocella, Cancer Vixen, 56n23 María y yo (Gallardo), 40, 40–42, 41, 42, 43, 57n52 Martini, Clem and Olivier (Liv) Bitter Medicine, 162, 163 The Unravelling, 162, 163 Mautner, Chris, 102, 109, 111 McCleod, Ken, 223n6 McCloud, Scott, 62, 116, 127, 180, 181, 190 McKay, Winsor, Little Nemo in Slumberland, 216 medical illustration, as discipline, 178–79 medicine, as term, 2 memory as concept, 191 fractured, 196–202 and home-seeking, 202–3 of pain, 66 men, and commercialized sex, 143–47, 144, 145 Mental Health Recovery Star, 124, 125 mental illness conflict and autonomy, 174–77, 179, 180, 181–84 and criminality, 155–56, 158, 159, 169n14 in graphic narratives, 156–58 madness term, 116 and neurodiversity, 168n6 and supercrip narratives, 168n2 See also psychiatric contention; schizophrenia; trauma Metscher, Thomas, 56n23 Metzl, Jonathan, 169n14 Miller, Nick, 150 mirrors, as literary device, 44, 51–53, 52, 53, 56n23

Mitchell, David, 110 Mitchell, W. J. T., 2, 102, 190 “Mom” (Sharpe), 161–62 morality. See ethics Morris, David, 59–60 Mother, Come Home (Hornschemeier), 158, 169n27 Mouly, Françoise, 111–12 Müller, Herta, 76 Müller, Oliver, 88 Muñoz, Jose Esteban, 204n20 My Degeneration (Dunlap-Shohl), 76, 79–83, 80, 82, 84, 85, 90, 91–95, 92, 94 “My Mom Was a Schizophrenic” (Brown), 161 Nagoski, Emily, 137 Nail, Thomas, 36n10 narrative mode and morality, 7–8, 15, 18–19, 20n36, 20–21n43 vs. parental attitude argument, 20n39 Neimeyer, Robert A., 36n2, 37n30 neurodiversity, 168n6 Newell, Christopher, 19n1 Nilsen, Anders, 24, 36–37nn22–23 The End, 36n11 See also Don’t Go Where I Can’t Follow Norlock, Kathryn J., 28 normate, as term, 113n17 Norton, Michael I., 36n7 Nothing Was the Same (Jamison), 25 Oates, Joyce Carol, A Widow’s Story, 27 Obama, Barack, 216, 218 O’Connor, Kim, 106 On Sanity: One Day in Two Lives (Una), 170n40 Opening the Head (Schmidt), 76, 77, 78, 81, 83, 85–87 ordinariness, 102–6, 110–11 Our Cancer Year (Pekar), 71 Oyola, Osvaldo, 151n14

Parens, Erik, 20n39 Parkinson’s disease overview, 74–75 and agency, 87–89 authorial voice in depictions of, 91–95 and body as binary system, 78–81 coping strategies, 81–83 deep brain stimulation, 75, 83–89, 84 diagnosis and progression experiences, 77–78 and relational autonomy, 91 path-making and mapping as concept, 187–91 as curatorial practice, 195, 203n7 and fractures, 196–202 and home-seeking, 202–3 PathoGraphics, defined, 2–3 pathography, defined, 2–3, 205–6 pathos, as term, 2 Pekar, Harvey, 169n19 Our Cancer Year, 71 Pembroke, Louise, 127 Self-Harm: Perspectives from Personal Experience, 123 Petit, Philipp, 90, 91, 92 photography, as medium, 47–50 Piepmeier, Alison, 20n36, 20–21n43 Plessner, Helmuth, 88 Porcellino, John, 60 The Hospital Suite, 70–72, 71, 157 Powell, Nate, Swallow Me Whole, 158 Prodromou, Amy-Katerini, 23, 35n2 psychiatric contention companion images, 129–30, 130 electroconvulsive therapy (ECT) theme, 117–19, 118, 128 recovery theme, 124–26, 125 self-harm theme, 119, 119–23, 121, 123 survivors’ style of, 126–29 Psychiatric Tales (Cunningham), 158, 159 PTSD. See trauma public vs. private, 102–5 The Quickening (lenk), 174–77, 179–85

pain and suffering comic depictions, 63, 63, 68–72, 69, 71 cultural and political contexts, 67–68 quantification of, 61–66, 62, 63 social dimension of, 12–13, 15–18, 59–60 See also grief Pain is Really Strange (Haines), 72 Palmer, Louise, Louise’s A to Z of Parkinson’s (with Kinchin), 76, 77, 78, 79, 83 Parasites!, 208–9, 210, 211

race, and pain measurements, 67–68 Rahmstorf, Stefan, 217, 219 recovery, psychiatric, 124–26, 125 relationships. See community Relatively Indolent but Relentless: A Cancer Treatment Journal (Freedman), 50–55, 52, 53, 54 Remenick, Larissa, 19n10 Ricoeur, Paul, 35

Index

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236

Rieder, André, 49 RitB (Recovery in the Bin), 124–26, 125 The Road to God Knows… (Allan), 162, 170n39 Ross, Edward, 208–9, 223n6 Rowan-Olive, Rachel, 127 Saks, Elyn, The Center Cannot Hold, 153 Saraƒin, Asylum Squad, 160 satire, 63, 63, 65, 125, 126 Savarese, Ralph James, 170n36 Scale Free Network, 211–15 scaling as concept, 207–8 of microbiome vs. humans, 211–15, 212, 214 of molecules and cells, 208–9, 210, 211 of planet, 215–21, 217, 218, 219, 221, 222, 222–23 Scarry, Elaine, 13, 60 Schalk, Sami, 168n2 schizophrenia in Batman’s Arkham Asylum, 155 in collaborative autobiographical texts, 162–68, 163, 164, 166–67 condition and history, 153–54, 170n42 in graphic narratives, 158–60, 159, 161 Schleunitz, Marc, 215, 223n8 Schmidt, Kathrin, Du stirbst nicht, 43, 44–45, 48–49, 51, 53–54, 56n29 Schmidt, Ute, Opening the Head, 76, 77, 78, 81, 83, 85–87 Schnellnhuber, Hans Joachim, 216, 218 science, and art, 178–79, 208, 211–12 Scott, James C., 119 selective abortion morality debate, 7–8, 12–14, 18–19, 19–20n12, 20n36, 20–21n43 professional vs. personal paradigms of genetic counseling, 9–14, 18–19 social contexts of genetic testing, 8–9, 19n10, 19–20n12, 20n20 self. See identity and self self-harm, 119, 119–23, 121, 123 Self-Harm: Perspectives from Personal Experience (Pembroke), 123 selfies, 47 Semanti, Medi, 221 Sen, Dolly, 127, 129–30, 130 seriality, 136–37 See also correspondence zones sex and sexuality asexuality, 150

Index

commercialization of male, 143–47, 144, 145 education, 139–40, 141, 148–49 silencing of female, 139–43, 141, 142, 146–47 Sex Criminals (Fraction and Zdarsky) overview, 135 asexuality in, 150 commercialization of male sexuality in, 143–47, 144, 145 “Letter Daddies” column, 148–49, 151n7 silencing of female sexuality in, 139–43, 141, 142, 146–47 Shakespeare, Tom, 7, 14 Shakespeare, William, Macbeth, 85 shame, 44, 104–5, 140–43, 146, 148–49 Sharpe, Sam, “Mom,” 161–62 Sibley, Dorothy Nissen, 117–19, 118, 128 Simonet, Andrew, 179 Singer, Marc, 155 single-panel cartoons, as style, 116, 126–29 See also psychiatric contention Skating to Antarctica (Diski), 23 Small, David, Stitches, 56n23, 157 Smith, Jacqueline, 223n7 Smith, Scott T., 139 Snyder, Sharon, 110 Solnit, Rebecca, The Faraway Nearby, 23 Sontag, Susan, 50, 51 Southworth, Cathy, 223n6 Spiegelman, Art, 169n19 The Spiral Cage (Davison), 56n23 spoofing, 125, 126 Squier, Susan Merrill, 95–96n9, 108, 139, 170n46, 190 Stanford PainScale, 61 stare, the of author, 46–50 defined, 43 and the gaze, 39–42, 40, 41, 42, 43 of reader, 51–55 two-way model, 43–45 Stitches (Small), 56n23, 157 Sturken, Marita, 197 Sturm, Jules, 47, 52 Sun, Wenliang, 156 supercrip narratives, 168n2 Super Paul vs. FCKW (Zalalate), 220 survivorship, as concept, 126 Swallow Me Whole (Powell), 158 Szasz, Thomas, 153–54 Tajjudin, Izzat, 155 “This Room” (Ashbery), 28

Thornton, Ravi, HOAX: Our Right to Hope, 162–65, 164, 166–67, 170n44, 170–71n46 Tod nach Plan (film), 49 trauma drawing as therapy, 194–95 of familial displacement, 192–94 and fractured experiences, 196–202 surviving, 202–3 Trishler, Helmuth, 220 Una, On Sanity: One Day in Two Lives, 170n40 The Unravelling (Martini and Martini), 162, 163 Ustundag, Ebru, 189 Valereto, Deneb Kozikoski, 155 violence criminality associations with mental illness, 155–56, 158, 159, 169n14 of deep brain stimulation, 85–86 of gaze, 40, 41 of normative gaze, 40–41 war trauma, 197 Wagenbreth, Henning, 220 Wagner, Richard, 75 Herr Parkinson, 76–77, 78–79, 81, 83–85 Walker, Margaret Urban, 14–15 Walker, Mort, 70–71 Walker, Tamsin, 119, 119–23, 121, 123, 132n15

Ware, Chris, 112n3 “Golden Opportunity,” 111–12 Jimmy Corrigan, 108–9, 113n30 See also Building Stories Weaver, Cheryl, 24, 36–37nn22–23 See also Don’t Go Where I Can’t Follow A Widow’s Story (Oates), 27 Wild, Ailsa, 223n7 Williams, Ian, 115 The Bad Doctor, 157 Willis, Simon, 101 Wittgenstein, Ludwig, 64 Wolf, Christa, Kindheitsmuster, 195–96 Wolk, Douglas, 60 women feminization of disabled figures, 111 as psychiatric survivors, 117–18, 122, 130 silenced sexuality, 139–43, 141, 142, 146–47 Wong, Donna, 61 Wong-Baker FACES Pain Rating Scale, 60–62, 62, 66 Woolf, Virginia, 59, 72 Worden, Daniel, 104 wordless comic, as genre, 185 Wyatt, Richard, 25 xkcd (webcomic), 65 Zalalate, Martyna, Super Paul vs. FCKW, 220 Zdarsky, Chip. See Sex Criminals Zurkow, Marina, 221, 222, 222

Index

237