Hiv/Aids Literature: the Effects of Representation on an Ethics of Care

HIV/AIDS LITERATURE: THE EFFECTS OF REPRESENTATION ON AN ETHICS OF CARE DISSERTATION Presented in Partial Fulfillment of the Requirements for The Degree Doctor of Philosophy in the Graduate School of The Ohio State University By Laura Sue Younger, B.A., M.A. ***** The Ohio State University 2004 Dissertation Committee: Approved by Professor Debra Moddelmog, Adviser Professor Brenda Brueggemann _________________________ Professor Jessica Prinz Adviser English Graduate Program ABSTRACT In my project, I argue that rigid representational constructs move narrators of HIV/AIDS literature away from a position of ethical care in descriptions of illness and the ill, and towards three deliberately assumed subject positions: hero, artist, and prophet. I argue that many narrators assume these roles to achieve some very calculated effects (punitive, dichotomizing, normalizing, socially sanctioning) and that these effects are only eroded when the roles themselves are dismantled. Finally, I examine what such a process of dismantling would look like, and how it would lead to a greater ethics of narrative care. Throughout my argument, I suggest that the unique rhetorical environment of care-taking dictated by HIV/AIDS (such as the undefined nature of the disease and the specter of homophobia which has surrounded discussion of the illness) contributes to a move away from an ethical concerns, and towards a narratorial concern with the control of representations. First, and primarily through the use of Abraham Verghese’s HIV/AIDS narrative My Own Country: A Doctor’s Story (1995), I suggest that the narrator fashions himself as a hero, and explore the implications of such self-fashioning for the plot-line of a text. I then conduct a close examination of Allan Gurganus’s Plays Well With Others (1999), with an accompanying discussion of the normalizing work done by the representations within the text. In an examination of ii Randy Shilts’s And the Band Played On (1987), I argue that the narrator attempts to deliver the message of illness from “on high” through establishing a position for himself as prophet, and through the use of a religiously-inflected language. After examining the means by which the representational strategies used within AIDS narratives cause a narrator or a text to abandon an ethics of care, I turn in the final portion of my project to an inquiry into how an ethics of care might be enacted, and what it might look like, largely within the context of Tony Kushner’s two-part play Angels in America (1993-4). iii To Diana iv ACKNOWLEDGEMENTS I offer my deepest gratitude to my exemplars of care: To Debra Moddelmog. I felt your steadfast support at every moment that I wrote, and I wrote as hard as I could because of your high standards. You spent countless hours, in patience, while I moved in geological time searching for the ways I wanted to write this. You waited for me and with me, and I thank you. To Brenda Brueggemann. You came to my project late and with a critique that moved this text to a new level, faster, than any other force. Thank you for your questions, your enthusiastic engagement, and your kindness. To Jessica Prinz. Thank you for your kind support, which always gave me hope, and your consistent responsiveness, which always kept me writing. To Thomas Piontek—thank you for being there for me as I got off the ground: the questions that you asked me were foremost in my mind as I wrote. To Susan Williams—I could not have undertaken this project without your belief in me, and I could not have seen it through without your support. To the members of our dissertation workshop: Dana, Jen, Doug, James, Theresa, Scott, Cheryl, Angela, and Lori—thank you for all of the comments. Always onward! v To Courtney Giesy—for your infinite strength, your expansive soul, your brilliant mind, and your untiring love and support. You will always have mine in return. To Chris Giesy—for your unbelievable fortitude and goodheartedness, the ways you trust me, and the love you show me. To Samson Heine—who at the age of three told me that we should be like Spiderman and “never ever lose our powers.” May we remind each other of that always. To my parents, Lanny and Phyllis Younger—who taught me to fight the good fight. You are the purest, most dedicated warriors for social justice that I know. I am truly blessed by your unwavering and unconditional love. To Eric Younger—you have my love, my respect, and my abiding joy in the fact that the same blood runs through our veins. Even though you are my little brother, you are a hard act to follow (and my personal model of a well-lived life). Above all, to Diana—my lover, my muse, my life partner. You are what burns inside of me. Enough said, because that which can be spoken... vi VITA February 1, 1969……………………Born—Flint, Michigan 1991…………………………………B.A. English, University of Michigan, Ann Arbor 1993…………………………………M.A., English, University of Maine, Orono 1996-present……………………….. Graduate Teaching Associate; Department of English Ohio State University Columbus, Ohio FIELDS OF STUDY Major Field: English vii TABLE OF CONTENTS Abstract………………………………………………………………..…………ii Dedication……………………………………………………….……………….iv Acknowledgments………………………………………………………………...v Vita………………………………………………………………………………vii Chapters: 1. Representational Strategies in Illness Narratives: An Introduction……………..1 2. The Narrative Paradigm of Heroism………………………..……………………48 3. The Narrative Impact of Highly-Stylized Representations….………………….98 4. Religious Representations: The Narrator as Prophet …………………………..152 5. Alternative Representations and an Ethics of Care……………………………..201 viii Endnotes………………………………………………………………………..248 Bibliography……………………………………………………………………262 ix CHAPTER 1 REPRESENTATIONAL STRATEGIES IN ILLNESS NARRATIVES: AN INTRODUCTION I will begin with an observation that I take to be central to any examination of HIV/AIDS literature: the representations which surround illness can be a “way into” an intimate connection with another’s experience of suffering, just as surely as they can be a way of safeguarding oneself from any real contact with that experience of suffering. Since the late 1980’s, a body of literature has developed around the narration of HIV/AIDS, a body of literature whose representational strategies present particular challenges to the caring narration of illness. As a result, we find that many narrative accounts of HIV/AIDS do not sensitively or thoroughly represent the experience of illness. Whether this is due to the fact that these narratives recount a disease with unprecedented symptoms or to the fact that accounts of it are written within rigid representational constructs are both possibilities that I will explore.1 An insensitivity to illness came as unexpected to me as I began reading this body of illness literature, given the inroads that have been made in psychoanalytic trauma theory, ethical-medical anthropology, and critical readings of illness narratives.2 How are we to explain unsympathetic representations within the context of HIV/AIDS narratives? What are we to do with narrativized representations formulated out of rigid ethics of principles or inflexible representational constructs? Above all, how do we avoid the formation of narrators and readers who are inadequate to the task of a tolerant, 1 flexible, or ethical considerations of the narrated illness? To begin to answer some of these questions, I turn to the observation which will become the central argument of this dissertation: many HIV/AIDS narratives contain narrators who are employing specific representational strategies to achieve some calculated negative effects, effects which are punitive, dichotomizing, normalizing, or socially sanctioning. These strategies create a narrative which 1) is less gay affirmative and more ready to employ normalizing rhetoric of all sorts, 2) contains narrators who are more apt to leave the clinical space with work unfinished and to imply closure where there has been none, and 3) represents narrators who become less able to operate outside of the roles they have created for themselves. These implications are marked, in part, by a lack of self-awareness on the part of the narrators, or by a lack of what Thomas Couser in Vulnerable Subjects: Ethics and Life Writing identifies as “the acknowledgment of the face and the autonomy of the other even, or especially, when the relationship is consensual… [This] is not just a matter of responsibility but responsiveness. The challenge is to enact or communicate this on the page” (22). A large part of my project examines the reasons why such responsive efforts at communication, initiated by the narrator in the event of illness, fail or come up short “on the page.” The field of HIV/AIDS narratives is large and comprised of diverse genres. For this dissertation, I have drawn on vastly different genres, in part to suggest that the genre that “houses” the narrator has less impact than the representational strategies he employs. In the interest of narrowing the field of textual possibility and of selecting texts which are archetypal representatives of much HIV/AIDS writing, I have chosen to focus on four narratives: Plays Well With Others, My Own Country, And the Band Played On, and 2 Angels in America. I have chosen to focus on these texts for some specific reasons. First, most came into circulation in the decade which followed after the late 1980’s—after the devastating scope of the pandemic had come into public awareness, before the advent of protease inhibitors, before the public understanding that many people would come to live for many years as HIV-positive, and before the human cost of the pandemic in other regions of the world was fully known. At this time, many of the unknown factors of the HIV/AIDS pandemic began to influence the representational choices that the narrators made. Second, these texts contain narrators who simultaneously occupy the role of caretaker, and thus clearly demonstrate the representational mechanisms behind the selection and sustenance of certain rigid narratorial roles within the text.

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