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RETHINKING HIV STIGMA: LOCATING INTERSECTIONALITY AND AGENCY IN THE EXPERIENCE OF SOCIAL EXCLUSION by Nevia Pavletic A Thesis Submitted to the Graduate Faculty of George Mason University in Partial Fulfillment of The Requirements for the Degree of Master of Arts Anthropology Committee: ___________________________________________ Director ___________________________________________ ___________________________________________ ___________________________________________ Department Chairperson ___________________________________________ Dean, College of Humanities and Social Sciences Date: _____________________________________ Summer Semester 2015 George Mason University Fairfax, VA Rethinking HIV Stigma: Locating Intersectionality and Agency in the Experience of Social Exclusion A Thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts at George Mason University by Nevia Pavletic Bachelor of Arts University of Maryland, College Park, 2009 Director: Cortney Hughes Rinker, Professor Department of Sociology and Anthropology Summer Semester 2015 George Mason University Fairfax, VA DEDICATION I dedicate this thesis to my parents, Jadranka and Zivko, for their unconditional love and support. ii ACKNOWLEDGEMENTS I would like to thank all those who have helped me, either directly or indirectly, with this thesis. You know who you are. This thesis would not have been possible without your support and encouragement. I am also grateful for anthropology—a discipline that I entered into by pure happenstance but with which I fell in love rather quickly. Anthropology, you have encouraged me to be curious and creative, to think outside of the box, and you have challenged me to reflect more deeply on the intricacies of life and our shared human experience. I am lucky to have found my academic “home” in you. I only wish that we had found each other sooner. Thank you, anthropology. The journey has been awesome, and I hope that I will have another opportunity someday to research and write about the peculiarities of the world we inhabit. iii TABLE OF CONTENTS Page List of Abbreviations ....................................................................................................... v Abstract .......................................................................................................................... vi Chapter One: Introduction ............................................................................................... 1 Chapter Two: Methodology .......................................................................................... 14 Chapter Three: HIV/AIDS in the United States and Beyond........................................ 26 Chapter Four: Stigma .................................................................................................... 36 Chapter Five: "We face five times the discrimination": Intersectionality and the Stigma Experience ............................................................................................ 50 Chapter Six: To Tell or Not to Tell? Navigating through the Politics of Disclosure............................................................................................... 64 Chapter Seven: Transforming the Illness Experience ................................................... 83 Chapter Eight: Significance and Recommendations ..................................................... 95 iv LIST OF ABBREVIATIONS Acquired Immune Deficiency Syndrome .................................................................... AIDS Centers for Disease Control and Prevention ................................................................. CDC Human Immunodeficiency Virus ................................................................................... HIV Injection Drug Use ........................................................................................................ IDU Joint United Nations Programme on HIV/AIDS…………………..……………..UNAIDS Men Who Have Sex with Men…………………….......……………………………..MSM People Living with HIV or AIDS ..................................................................................PHA World Health Organization .......................................................................................... WHO v ABSTRACT RETHINKING HIV STIGMA: LOCATING INTERSECTIONALITY AND AGENCY IN THE EXPERIENCE OF SOCIAL EXCLUSION Nevia Pavletic, B.A. George Mason University, 2015 Thesis Director: Dr. Cortney Hughes Rinker The aim of this thesis is to provide a “thick description” of HIV stigma within the United States cultural context, a topic that has received relatively little attention from anthropologists. Since the early days of the epidemic, HIV/AIDS has been symbolically linked with the “dangerous other,” and the stigma associated with the disease has had devastating consequences for both individuals and communities. Through a combination of semi-structured interviews, textual analysis, and a literature review, I examine how the embodied experience of HIV stigma intersects with other forms of social exclusion and discrimination, and also how people living with HIV/AIDS (PHA) challenge and resist stigmatization. Specifically, I bring to light how agency is put into practice through the process of disclosure and also through the strategies that PHA employ to transform their illness experiences into a meaningful life narrative. My research builds on the existing scholarship on stigma and structural violence, while simultaneously bringing to light the power of PHA to resist the shame, secrecy, silence, and isolation that usually accompany an HIV diagnosis. I argue that by shifting our interpretive lens towards agency and subjectivity and away from vulnerability and passivity, we can begin to view PHA and other marginalized groups as less Other. CHAPTER ONE: INTRODUCTION Secret We all have our secrets. A few months ago, one of my biggest secrets fell into the hands of a stranger. Literally. On a frigid winter morning in early March 2015, I sat in a lecture hall full of global health professionals, academics, and students at a large private university in Washington, D.C. At the very start of the lecture, the speakers invited the audience to participate in an interactive activity. It went like this. We were each given a slip of paper and asked to write down a secret, something that we would not want anyone to know. Then, we were asked to fold the paper over several times, so that the contents would not be visible, and exchange the slips of paper with the person sitting nearest to us. I reached over to a young woman sitting in front of me; we both grinned nervously as we grabbed each other’s secret and clamped it tightly within our fists. I could feel a palpable tension and anxiety in the lecture hall as everyone (reluctantly) began to exchange their papers. I myself began to feel apprehensive knowing that someone else, someone whom I barely knew, was holding one of my deepest secrets in their hands. I could feel my heartbeat speed up and my palms begin to sweat as a wave of panic ran through me: What will happen next? Will they open the paper? What will they think about me if they find out my secret? I should have just made something up! Something silly, something innocuous…like, “I stole my brother’s lunch money when I was eight.” But it was too 1 late. My secret was already in someone else’s hands, and all I could do now was surrender my trust to them. Although we never opened up the slips of paper (phew!), the point of the exercise, the speakers explained, was to simulate what it was like for a person living with HIV to disclose their status to another person. I am not a person living with HIV, so I cannot fully understand what the experience is like. But I got a sense of the anxiety, the stress, the doubt, the worry that must go on during the process of disclosure; the fear that you will be judged, rejected, or put down simply because of the fact that you are living with a certain virus. For me, this experience was nothing more than an innocuous simulation. For people living with HIV/AIDS (PHA), however, stigma is very much a reality. The aim of this thesis is to provide a “thick description” (Geertz 1973) of HIV stigma1 within the United States cultural context, a topic that has received relatively little attention from anthropologists (see Grove et al. 1997; Stanley 1999). Through a combination of semi-structured interviews, textual analysis, and a literature review, I hope to provide a critical analysis of the lived experiences of PHA by focusing on how they challenge stigma, while also shedding light on how other forms of structural violence and discrimination shape the stigma experience. My thesis is organized as follows: Before presenting my research findings, I provide background information and a literature review in Chapters Two through Four. In Chapter Two, I describe my methodology and provide a brief reflexive analysis of my research. The biology, modes of transmission, and epidemiology of HIV/AIDS are 1 In this thesis I use “HIV,” “AIDS,” and “HIV/AIDS” interchangeably. 2 discussed in Chapter Three. In Chapter Four, I provide an overview of stigma as it has been applied to research on HIV/AIDS as well as other conditions, drawing primarily on literature from anthropology and related disciplines. My findings are divided across three chapters. Chapter Five focuses on how stigma is intertwined with other forms of structural violence and discrimination. In Chapters Six and Seven, I examine agency in response to stigmatization.

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